I'm part of a study (called ReVIVE) through University of California in San Francisco that is testing the effectiveness of clemestine fumarate in re-myelinating damaged neurons. I've been participating in various MS studies through them since my diagnosis in 2020. I feel privileged to be contributing to such important research that could change the lives of millions
I'm 30 now and I got MS at 15. I remember my neurologists back then saying "we don't know where MS comes from, but the research is is really promising". Seeing this video now is awesome!
My mother was diagnosed with MS in the mid 90s. There really wasn't a lot out there in knowledge or drug information. My mom was receiving Beta Interferon injections and it seemed to help... sort of. Mom and Dad tried all sorts of things, including bee sting therapy. It didn't directly kill her, but it did weaken her body enough that the flu did. Hoping all is well with you, and that it hasn't been affecting your life too much.
My husband's side of the family is prone to bad reactions to EBV and there's alot of doctors in the family. As soon as my husband got EBV (14 years ago), they were worried about MS, and I was studying biotech at that point too,and remember it being something I connected to it too. Strange that the doctor daid they didn't know, but I guess they just meant they didn't know for sure, as the suspicion has been there for quite a whilr
As a 32 year old MS patient who has had MS for about 14 years and that is very poor living in the U.S. I have accepted and have come to terms with that even if a cure gets created I won't be allowed access to it since everything in this countries healthcare system is entirely based on the weight of your wallet and the size of your bank account. I have accepted this and am trying adapt to and live with the ever changing hardships that RRMS brings along
Sending you loads of strength and love. My sister was also recently diagnosed and she's around the same age as you. Treatment and medication is steeply expensive in Indian too though consultations are relatively affordable.
Do you have any skills in engineering, medicine or programming? You could apply for a work-visum in Germany, or another country with universal healthcare.
@@shareikaI do have a self-taught skill set as a computer technician and network manager but the higher education in this country is much like the healthcare system, inaccessible if you don't have a heavy wallet or large bank account, taking out student loans in this country is also not a smart move since student loans in this country are designed to never be paid off, you can't even claim your student loan debt when filing for bankruptcy. To put it bluntly, you become an indentured slave to the loan. In 2017 I sold everything I owned to attend a technical school to get certified but the money I earned from selling everything only lasted about 2 weeks, it was used exclusively for gas to get me back and forth. Even if I set it aside it wouldn't have even been enough to cover the cost of the certification exams. I would love to get certified and move out of this country but the hard truth for people in this country is that it's set up to trap the poor. Most people in this country are too poor to travel abroad, let alone move abroad
My dad had this disease all his life and died at 44, not knowing exactly what his ms was, this was the most important yet painful video I’ve seen on TH-cam. Thank you Sci-show for sharing this video. I now know a lot more than I ever could find about this disease rip dad. Shout out sci show.
My husband has lived with MS for over 40 years. His first symptoms were when he was 17, he didn’t get officially diagnosed until 10 years later. He is on one of the disease-modifying drugs called Tysobry. It worked for him, his progression was slowed way down. When he was first diagnosed, there was nothing, really, for treatments. . He was diagnosed with secondary progressive and given a prescription for a wheelchair. Many years later, he can still walk for short distances, and he can still drive. They are calling his disease relapsing-remitting now. He has a plethora of symptoms, including pain, tinnitus, fatigue, spasms-the symptom list is quite long, but he functions well and participates in his own life to the best of his ability . It’s a terrible disease, but there is more hope now than ever. My youngest daughter also has it, although quite mild. I’m mentioning this to remind people that there is a genetic component as well.
I'm in the diagnostic process for it now and it is highly likely I have it, based on my MRI and symptoms. Assuming I end up being diagnosed with it as my neurologists and I suspect, I will likely pursue sterilization. I know studies supposedly show there isn't any evidence proving there's a genetic component but I know of too many people who have MS who have a family history of it so I wouldn't want to take any chances.
If the development of MS is caused by a protein in your neurons being identical to that of the virus, then it stands to reason that the gene causing your body to produce that version of the protein is the main risk factor, yeah.
I am 35 and was diagnosed with MS on Halloween 2019, and have been on all three B-cell targeted DMTs (disease-modifying-therapies): Tysabri, Ocrevus, and currently Kesimpta. It absolutely blows my mind how far research has come with MS treatments even within the last few years, and I am so so so grateful to all the scientists who work on this terrible disease. Thank you SciShow for shedding more light on MS! ❤️
Kesimpta has been a Godsend for my wife. She's come a long way since Copaxone back in the day. Btw, you should look into Lion's Mane mushroom... it's been shown to regrow damaged nerves. Anyway, God bless and be well!
@@CrochetNewsNetwork modafinil is what my neurologist has me on for the fatigue and brain fog associated with MS. It's been fairly effective so far with the side effect of seeing shadows or things moving on the edges of my vision that are not there.
@bass777chick. Scientists are not working on the problem of eradicating MS. They just want to produce another toxic drug for the pharmaceutical companies. There is no profit in making people healthy.
I lost my dad in 2004 to MS. I took care of him in his last years and even i had to put off school and honestly was never really able to go back, but i wouldnt trade it for anything. Taking care of him taught me so much about him, myself and and our relationship as a whole. He passed when he was 28. I am now 40 and a colon cancer survivor. My dr found a baseball sized tumor in my lower colon in 2015 and i habe been cancer free ever since. So I know he watches over me. I just miss him so damn much.
Wait...he couldn't have passed at age 28 in 2004, with you having been caring for him and putting off school, if you are now 40 in 2024. So, you would have been 20 when he passed. So, unless he had you when he was 8 years old, that typo is probably off by 10 years. I'm guessing he was 38 years old when he passed in 2004, not 28 (38 is still so young though). So, by deducing the math, with a correction of assuming he was 38 when he passed, you were born when he was 18, and you were 20 when he passed and had already been caring for him for 2-3 years which put you either in your last year of high school or shortly after when you started that care. Or, the typo was that he passed when you were 28? No, that math doesn't work either because he died in 2004 and you are 40 in 2024. I'm confusing myself! lol In any case, you have survived colon cancer for nearly 10 years already (getting colon cancer around the age of 30 is really young to get that, wow). I now see how he must have been watching over you to have found that giant tumor in time to save you. That is just beautiful! It gave my heart a big, warm hug when you said you wouldn't trade those last few years of caring for him for anything. It feels so good to know that your relationship with him provided you with lessons that very well may have had an even bigger impact on your life than those extra years of college learning. Those are real life skills. The ones you can't learn in school. The ones that direct you, shape you, help keep you grounded and living as your authentic self. I'd wager that whenever you need to make an important life decision, your mind goes back to those last years with your Dad, and in those memories you would find the answer to your decision. At least that's how I imagine it happening. Not that I've ever experienced something like that myself. Regardless, the way you wrote your story really resonated with me. Thank you for sharing those words and I'm so sorry he's not with you, here on earth, today and that missing him is so painful. Here's to decisions made by the heart, of loving someone enough to sacrifice for, and knowing he would have done the exact same thing for you! Cheers, mate.
It really is, barely hear about it over here in Canada unless A&W restaurants are doing a charity drive for it or you go seek that information out yourself
My bio mom died 2 years ago after having MS for over 30 years and living in a home. She was so unwell she lost mobility and memory, which was also because of dimentia. I had to be adopted at birth because she was unfit to parent. It was horrible to grow up seeing her all the time but unable to care for me. She deserved a better life. I am happy to see this video and it gives me hope for those who live with it now. I wish all a healthy happy life and that the cure will come soon.
I am so sorry this happened to you. My brother has severe MS and it is heartbreaking to see the decline. I really hope people don't have to experience this in the future too.
@@SentinalhMC I don't know what strange place you come from, but people don't refer to their biological parents as "bio mum or bio dad". They either say, my mum or my dad.
@@redblade8160If someone had adoptive parents who they refer to with mom or dad, it can get confusing whether they're talking about their adoptive parents or biological parents. So it's quite common to use the "bio" marker for talking about the biological parent
I’m a 16 year old, diagnosed this year with MS. My mother has it, as well as some aunts on her side. I already use mobility aids in school (cane, crutches), and my symptoms sort of come and go. I love Scishow, and although it’s a lot, and terrifying, it’s awesome to see it talked about on here! It’s a comfort, and I thank you for that. Getting my first infusion of Ocrevus on the 12th! :D Edit: Thank you for the kind words. Happy MS awareness month! 🎗🧡 (Misspelled the medication lol oops.)
I hope it works for you! All the best to you. One of my cousin's with MS had a very aggressive start, but all of a sudden her progression all but stopped for over a decade and has untill now only picked back up very slowly. I hope something like that for you too, and all with MS, while we wait for science to crack more codes for you ❤ All the very best to you!
Good luck with the new medication! I was diagnosed with MS 10 years ago and it's amazing how science and medications have advanced even since then. For the first few years I had to inject myself every week, but have now been using oral medication for a few years and will soon get to try Cladribine and see if it suits me. Fingers crossed for both of us and let's keep fighting! :)
Oh, best of luck with the new medication! And in the meantime, as long as it’s your taste, don’t forget to decorate the crap out of your mobility aids. I don’t allow boring clothing in my life, and I’m sure not allowing boring mobility aids either. Patterned duct tape, rhinestones, e1000 glue… there are so many options!
I've had MS for 37 years. I am still able to work, walk and dance. The only times my illness became aggressive was twice when I went on low fat diets (one for weight loss, another time to be a vegan). I now eat an animal based diet and feel pretty good for a person with a long history of MS.
Vegan diets aren't always low fat, been vegan for years and it doesn't make it worse for my ms. My neurologist said to just have a heart healthy diet because you're still prone to other things like heart disease. Diet can't do anything for ms
But a higher fat vegan diet would be heavy on Omega 6 oils which is known to be inflammatory and to increase cancer risk. In any case, for me the saturated fat seems to be important. Myelin is synthesized from cholesterol so a low fat and hence low cholesterol diet is likely to be suboptimal for brain health.@@belalugosisdead4444
I'm just gonna say this. Don't fckin quit on animal based diet. It is the most nutritional and mineral dense food. New researches show that animal diet literally helps people beat numerous diseases. It's as if we were meant to eat it... And we did for thousands of years until 21st century and all the low-fat, vegan nonsense.
So Dr. Swank and Professor George Jelinek are wrong about Low saturated fat diets for MS? Low fat diets have been the only thing to help a lot of people with MS.
I was diagnosed in 2019, when Ocrelizumab was still quite new. With this treatment, coupled with a strict approach to diet and exercise, I have been relapse free since treatment began. After not being able to walk, talk, see or feel properly, I can't help but acknowledge this as a huge blessing.
@@waveril5167 yes, diet can be very important for MS patients for example mediterranean diet has a lot of anti inflammatory benefits which are optimal for people with MS
I’m a 40 year old MS patient and was diagnosed 17 years ago. This disease is a curse. You have to live life one day at a time and never know what might happen next. My nerve damage is to the extent that I can’t feel anything from the tips of my toes up to my knees. I can’t feel my fingertips. My doctors are calling it peripheral neuropathy. It’s extremely hard to get around and I have to burden my family with doing things for me that I should be able to do. I’ve tried various treatments that don’t stop the progression of this disease. I’ve come to terms that it will eventually kill me. I wouldn’t wish this curse on anyone.
@@markbothum4338 copaxone actually gave me problems and sped up my symptoms and relapses. I’m glad it’s working for you though! I’ve yet to find a therapy that works for me. And so we just go on the best we can. Every day is hard but there are harder days out there so I try to stay positive
@@georgielol I’m sorry you have to deal with related symptoms. Not being able to feel parts of your body makes life difficult. You don’t realize how much you use your hands until you can’t feel them. Plus adding pain into the equation doesn’t help. I wish you well
@@adristein84 Thanks. I hope you are okay as well. It's really been difficult to get used to not feeling anything in my hand but I've somehow managed to adjust, and some things I just can't do anymore (I don't write with my right hand anymore).
@@mr.ks.6499 I had a seizure (which is rare for MS) and the ocasional numbing. Confirmed by spinal tap. I've been on Avonex for 8 years, and my RRMS has been mostly stable so far, so I've been lucky.
I'm curious, how did you get diagnosed with MS if you didn't have any attacks/symptoms prior to this? And yes, best of luck with the flareup, hoping it passes quickly with no lingering effects!
@@oksanakaido8437 I have had symptoms before. The issue that got me diagnosed was an infection of the optics nerve for my left eye. This current one is simply the first one I have had since my Diagnosis.
Stellate Ganglion Blocks have been SCIENTIFICALLY PROVEN to “reduce or ELIMINATE symptoms of autoimmune diseases” by calming the overactive immune system and decreasing inflammation. And, lions mane mushroom supplement has been SCIENTIFICALLY PROVEN to regrow brain neurons x2. And, red led near infrared light therapy has been SCIENTIFICALLY PROVEN to HEAL NERVE DAMAGE, “REDUCE OR REVERSE DEGENERATIVE BRAIN DISEASES,” decrease inflammation, improve circulation, regrow veins, stimulate mitochondria synthesis, and more
@@oksanakaido8437 It's a collection of symptoms that the doctor will assess over time. They may not occur all at once.Like maybe blurry vision, hearing problems, weakness in arms or legs, prickly pains in the limbs. Just examples. My daughter was diagnosed 14 years ago when she was 27. She was telling her doctor about her symptoms for a couple years until he agreed to have her see a neurologist, who then had a lumbar puncture done. It was then they found the cause of her problems.
I got diagnosed with MS at 33, I'm 46 now and its really starting to kick into high gear with me recently losing the effective use of my right hand and arm (being right handed this especially sucks!) and I am also beginning to lose sensation in my feet. Coupled with crippling fatigue, bouts of dizziness, optic neuritis etc etc... its about as much fun as it sounds! This research is promising in that it will hopefully prevent people in the future having to experience what I am, and I by no means have it the worst! Sadly for people like me experiencing the effects of nervous system damage I don't think this research is much use, but it does mean there's maybe a brighter future in store for upcoming generations!
I recently found some studies on MS treatments looking at certain antifungal medications for their ability to stimulate the body's own stem cells to remyelinate the nerve fibers. These are still in early phases, (the oldest one I saw was from 2015) but they are showing promising results. If they can isolate the effective part of the drug, there may be hope in reversing the damage caused by MS. Hang in there greenmoose.
Sir I pray for your faster recovery , I understand sorta because I was diagnosed with ms 11 years ago from now and have seen many things , more power and faith sir ,it's really necessary
@@tistrishaIt started with fatigue that wouldn't go away, which was just dismissed as overworking/overheating, but then I lost feeling/strength on my entire right side, so I went to the ER and they took an MRI, which showed the lesions on my brain and spine. Then they did a spinal tap just to confirm it wasn't lyme disease.
Can I ask you a personal question about your diagnosis? Can you remember having your first symptom of numbness, was it this last time or years before? Regardless either one of those, if you looked at your medical records would you notice a vaccine you took just before you started to feel your first numbness, like a few weeks to a couple months? Not the covid vaccine but a regular one like Tetanus or something?
@@JollywoodJoelThe first time I had the numbness was within a week of the fatigue, back in August. It was my first flare-up, and it wasn't really anywhere near my last vaccine, which I think was a flu shot over a year prior to my symptoms showing up.
@@thegothemperex okay, i was just seeing a connection cuz I found out a doctor claims (on CDC site) that certain vaccines (not all) can create MS and other autoimmunes but if it's been over a year for you, probably not in your case but mine was less than a month after my first vaccine as an adult and I was 29 when I got the TDAP shot. I was just curious.
This has me really excited. But not for the reason you think. See - you've missed an angle entirely! EBV is an airborne infection. The things we do to prevent airborne infections *also* prevent EBV infections, and thus *also* prevent MS! One of the most exciting reasons I work as a tiny part of a group of 80+ doctors, scientists, engineers, and activists, on the airborne mitigation aspect of *COVID* pandemic response is that providing clean indoor air is essentially 100% effective at preventing airborne disease in the same way as providing clean water is 100% effective at preventing waterborne disease. And y'know what? We *already* have the tools. Good ventilation. Basic stuff like ERVs and smart controls. Improved filtration - slots right in for the most part, and portable supplementation as a temporary fix where needed. That's the beauty of it. But shamefully, we've completely failed to do this part of pandemic response in any meaningful way. That's the tragedy - we really learned nothing there. But slowly, we're trying to shift the winds of change.
Thank you for revealing that EBV is an airborne infection. I hate that EBV is know as 'the kissing disease" when no one I kissed in 2016 had mono but I still ended up sick with it.
It’s been confirmed and cited that it transfers via saliva and other body secretions. It’s not a misnomer. It can become airborne but isn’t exclusively. The thing is it’s so easy to get even as a small child and older that kissing or no, it would be so hard to track down where you got it from even if you never kissed anyone or did kiss someone.
That’s amazing!!! I’ve heard of so many trials being done and I’m glad that even though it isn’t as prevalent as some diseases there are people absolutely dedicated to figuring it out. Right now it seems symptomatic treatment is all anyone does, and don’t get me wrong, treating massive seizures and whatnot is HUGE! I hope one day it won’t be such a scary diagnosis 💕
I did a presentation on this military study and the latest evidence on MS and I was looked at crazily with the same information included here. Looks like I need to forward this video to them.
I have it (although undiagnosed and waiting for one) it's nice to hear it talked about without people talking about it like an instant death sentence like it's marburg variant at least in my circle
I don't have MS, but have rheumatoid arthritis which is also an autoimmune disease. There are several people in my family with RA, and others with lupus. I feel like any advance in research on autoimmune disease will benefit us as well. I hope those with MS do get a cure.
Stellate Ganglion Blocks have been SCIENTIFICALLY PROVEN to “reduce or ELIMINATE symptoms of autoimmune diseases” by calming the overactive immune system and decreasing inflammation. And, red led near infrared light therapy has been SCIENTIFICALLY PROVEN to HEAL NERVE DAMAGE, “ decrease inflammation, improve circulation, regrow veins, stimulate mitochondria synthesis, and more
It's amazing how far they have come with this. My mother was diagnosed in 85 when she was in her mid 30s, which was really rare at the time. They also traced it back to high school for her before her symptoms really manifested. At the time there was no definitive diagnosis. It was most of a rule out diagnosis instead. I remember them taking a large section of nerve from her calf and using it to test how the impulses traveled to decide if that's what she had. It took her more than a year for a full diagnosis. One doctor even told her that her symptoms were all in her head. To see that were are getting definitive answers is amazing. Thanks for this video, it was really interesting.
@@mr.ks.6499 Unfortunately she has progressed to where she can't really walk more than a few steps on her own. MS causes lesions in the brain and she has several So we are going down an early dementia path at this point. But we are also 40 years in at this point as well. But, in all honesty, I feel she got very lucky because she has never been bed bound. She had/has progressive regressive type and she had a lot of periods of regression where her symptoms were significantly less. Her MS has always been manageable, which is better than so many people.
I'm now almost 50 and got my MS diagnosis more than 10 years ago. At the time I wasn't given much encouraging news, they didn't know what caused it, couldn't cure it and could only help me deal with it's effects. But science marches on, thank god.
This is really important to me. My Bis-Zia(great aunt)Died some years back she was diagnosed when she was 50 and after 5 years she was fully bed-ridden, and lived like that til she was 67+. I can't fully remember because she was bed ridden for 10+ years and I started losing count. But God Damn do I respect that, she is one of my absolute heroes for being able to live like that for so long, let alone at all. Zia Marcella is the most badass of a person I will probably ever Know, and as much as I wish there was a cure or preventative measures for her when she was a live, I just hope now that we will get to a cure and vaccine sooner so no one else has to go through that.
Please do one on Chtomic Fatigue/post exertion response autoimmune diseases! It's so hard for people to grasp the concept that someone can be "allergic" to physical activity.
My partner has the post exertion malaise from covid last year, the only thing you can do it nothing from the research we did, exercise is bad! And she is actually now slowly getting better.
I know PEMS has been covered in at least one long COVID show, but I don’t think there’s been a specific ME/CFS with PEMs episode. The thing is, SciShow generally needs a “hook,” often new research… so it might be a bit before something comes up. But I have PEMs (my diagnosis literally hinged on whether I was more tired or sore the day I was at the rheumatologist - he literally said if I hadn’t been in so much pain he would have diagnosed me with CVS/ME instead if fibromyalgia. 🫤), so I keep an eye on the research, and will definitely make sure anything new and interesting is passed along to the right people!
Yeah EBV caused these for me. Now I am diagnosed under the umbrella term "fibromyalgia." Some medication and herbs allow me to get actual deep sleep so my general fatigue has improved immensely. I know it's not that easy for everyone, but I realized that for yeeeears I wasn't actually sleeping due to EBV, and that caused so many of my issues.
My friend died of MS last year. He had PPMS and the drugs did nothing to help. From riding motorcycles cross country to being bed ridden 3 years later, to burying him after 5 years. It's devastating to watch.
I have long been interested in autoimmune diseases, ms is on both sides of my family. MS is more common among people with roots in northern Europe. Some researchers in the UK were examining bones of people who died around the time of the Black Death. What they found was that people who survived the Black Death were much more likely to have the genes implicated in autoimmune diseases. People without those genes were more likely to have died from the Black Death. Therefore, the Black Death created a bottleneck where the population was much more likely to have genes for autoimmune diseases. It doesn't help with a cure, it does help explain why some pockets of population are more likely to manifest autoimmune diseases.
People originating in northern Europe are more likely to live outside of 30 degrees from the equator so will need to take vitamin D orally during at least some part of the year. Lack of vitamin D is also thought to be a contributing factor to immune diseases.
I don't think this is the full story tho, and maybe just a super small factor tbh. Autoimmune diseases are also very common among second generation immigrants. As their genetics are more adapted to a different environment/ecosystem. I know several latinos and those with mostly native American DNA that have MS.
@MBTIology the black death plague largely affected Europe and Asia in the mid 1300s. I'm not sure it had similar affects in the Africa n and s America.
Stellate Ganglion Blocks have been SCIENTIFICALLY PROVEN to “reduce or ELIMINATE symptoms of autoimmune diseases” by calming the overactive immune system and decreasing inflammation. And, lions mane mushroom supplement has been SCIENTIFICALLY PROVEN to regrow brain neurons x2. And, red led near infrared light therapy has been SCIENTIFICALLY PROVEN to HEAL NERVE DAMAGE, “REDUCE OR REVERSE DEGENERATIVE BRAIN DISEASES,” decrease inflammation, improve circulation, regrow veins, stimulate mitochondria synthesis, and more
Doing research on Long Covid made me discover the effects that viruses can have on the body, including MS and EBV. It's heartening to see progress being made for MS! I think the sooner people shift their understanding of viruses from being just acute infections to being associated with longer-term changes and chronic conditions, the better we'll be able to help people living with such debilitating conditions, including MS and ME/CFS. Especially with Covid reactivating latent EBV in so many people.
That’s an interesting theory as to why some people got neurological symptoms from Covid &/or the Covid vaccines. The immune system is great until it over reacts due to molecular mimicry.
@@jbmurphy4Yes, from the research so far autoimmune issues are so common it definitely seems like a significant factor. People develop not only neurological symptoms but new allergies to everything, and improve with antihistamines. Though they've also found biomarkers confirming that there's a leaky blood-brain barrier involved as well, and autopsies have found viral reservoirs in the brain too. What's interesting is that some patients' symptoms seem to be driven mostly by the overreacting immune system, which is why vaccines make everything worse, but other patients seem to get better with vaccines, suggesting viral persistence is more at play. And there are those with depleted T cells according to CD4/CD8 tests. The body is so complex.
@@Seikufu I’ve developed a bad hive allergy in the last year. Antihistamines work for it but the doctors I visited said it was unrelated to covid, I’m not convinced though! I’ve heard the leaky brain & also gut barriers are more common in people with hyper mobility (which seems to be genetic). So that might be another genetic factor to add to the mix.
Look mom they made a sci show video about my swiss cheese brain! Thank you sci-show, I'm trying to get diagnosed for it right now but it's been really difficult so this cheered me up
Hang in there. Took 3 years and another serious flare to get my diagnosis confirmed, but afterwards the treatment plan has been remarkably effective, going on 15 years now. Also, my brain's 'swiss cheese' holes have actually _decreased_ in size on my last MRI.
I'm currently trying to get doctors to take me seriously. But it runs in my family so I've seen these symptoms before . I'm so tired of fighting the medical system.
@@katiekorell9776 If you’re female, you might want to hire a medical advocate to help you out… especially if you can find a male one. Depressing, but they can be very effective.
My mom had it, and she found it was extremely temperature sensitive. Little too cold or warm, and she was collapsing. Sucks because we live in Arizona, a land known for being more than a little too warm.
If he doesn't take a largish daily dose of vitamin D during the winter, it might help him to do so. Apart from ultraviolet light (which is the way you get your vitamin D intake during summer) it's suspected that infrared light also helps the immune system so that might be something to try as well. Apart from these specific needs of the immune system, any kind of white light can positively affect health during the winter by helping regulate the biological clock.
This is a common way of talking about RRMS that drives me nuts. No you're not "basically fine" between attacks - you have to live with the new symptoms that the last attack caused, cumulatively, for the rest of your life. It's wonderful that we have disease modifying therapies now but too many people don't get them early enough in the disease progression because of our broken healthcare system.
Keep in mind that with “less broken” healthcare systems such as universal healthcare, you are instead not given treatment. I was in the ER 3 times before they let me see a neurologist. Before that, it just wasn’t “bad enough” to warrant 15 minutes of his time. I have a whole bunch of brain and spinal lesions now, and I have a hard time imagining life if I were diagnosed earlier when I first had trouble walking. How much more of my brain would I still have? I will never know, because in universal healthcare you aren’t treated until it’s too late. That’s the principle, not an exception.
@@TumblinWeedsI feel like this could happen just as likely in the US, despite the “more money” and “higher quality”. Not having the money to continuously check up on ur own health sucks
@@emmanuelperez3019 i hate how americans have this 'well actually, we have it the WORST' attitude. do you realize there is countries with less instances of MS where the people get absolute crap medication from the 80s (if they can even afford it) and since the most of the newer DMT manufacturers won't make enough money, they don't even bother sending it there. first world people complaining so much when there's people where i'm from who'd kill to even have ONE thing you people constantly take for granted. you DO have it better. while it's not perfect (nothing is) it still is largely better than what so many other people are dealing with in this moment. gain some perspective for once in your coddled lives, seriously.
Been living with MS for 16+ years, and I find this interesting. I know there was JC virus talk for a long time, especially since it added risk with certain treatments. For the record, I've never had mono, but there are things I can trace back to my teen years (diagnosed at 27) which hindsight tells me was part of MS before it started becoming a problem. Definitely looking forward to what can happen in the future with this. I think the biggest trick is going to be repairing damage already caused.
The thing is there's a 90% chance you have had Epstein Barr which is one of the diseases that can cause mono but doesn't always lead to mono. If you have EBV as a child you might not have even had noticeable symptoms or they were symptoms so mild you didn't know you were sick. I think you have 25% of developing mono from EBV but that's only if you're infected as a teenager or adult. So if you were developing the first symptoms of MS as a teenager then that would point to a childhood EBV infection which is unlikely to lead to mono.
I recently came across studies investigating some effectiveness of certain antifungal medications on MS nerve damage. The drugs somehow stimulate the body's stem cells that can remyelinate the nerve fibers. The earliest study i saw was from 2015, so they are still rearching the mechanism, but there may be hope in rehabilitation.
Glad to see SciShow mentioning MS and being a level headed voice on TH-cam. My mother died at 53 due to complications related to her having MS. Hopefully fewer families will have to struggle with disease in the future.
Stellate Ganglion Blocks have been SCIENTIFICALLY PROVEN to “reduce or ELIMINATE symptoms of autoimmune diseases” by calming the overactive immune system and decreasing inflammation. And, lions mane mushroom supplement has been SCIENTIFICALLY PROVEN to regrow brain neurons x2. And, red led near infrared light therapy has been SCIENTIFICALLY PROVEN to HEAL NERVE DAMAGE, “REDUCE OR REVERSE DEGENERATIVE BRAIN DISEASES,” decrease inflammation, improve circulation, regrow veins, stimulate mitochondria synthesis, and more
My dad was diagnosed with MS when I was around 3, died not long after at 10, so it obviously progressed quickly. Apparently it's different from patient to patient. Naturally, this had a profoundly negative impact on the whole family, and my home life was kind of a nightmare for many years leading up to and after the death. Directly or indirectly, it ruined mine and my siblings lives for a long time. I'm not on speaking terms with 2 of them, to give some indication. Since then I've always been pretty terrified of the disease, understandably I guess. News like this gives me some ease, if only a little. Softens my existential dread from contemplating diseases like this.
I wanted to say something to cheer you up. But really, I don't know what to say other than I am so sorry for the loss of what seems like your entire childhood and family connections. I can only relate in that I have been estranged from my family for over 35 years. And it was, for the most part, the best decision I ever made. Family can be whoever you make them. I've learned that good friends who love you are just as good of family members as a blood family. That's all I got. I wanted to offer more but I don't have any magic words that would take away your pain. I so wish I did. But I will send you a silent hug and maybe you'll feel it, wherever you are. Blessings to you!
@@Yosetime Thanks man, I appreciate the thought, and sending good vibes to you too. I think I made it sound more miserable than it is - like you I consider the severance of those familial ties to be unfortunate, but ultimately a net positive. I'm still on good terms with some family members, as well as close friends who I consider family. Anyhow, didn't mean to pout. Everyone's got a story, this ones mine, is what it is. As long as you take the right lessons from it, well, it doesn't suddenly make it _good_ but not a total loss, right?
I'm 31 and have been dealing with MS symptoms since I was 19, though it took a looong time to get diagnosed. Thanks for this video, guys. It's always a thrill to have something that you can watch which feels more personal.
Stellate Ganglion Blocks have been SCIENTIFICALLY PROVEN to “reduce or ELIMINATE symptoms of autoimmune diseases” by calming the overactive immune system and decreasing inflammation. And, lions mane mushroom supplement has been SCIENTIFICALLY PROVEN to regrow brain neurons x2. And, red led near infrared light therapy has been SCIENTIFICALLY PROVEN to HEAL NERVE DAMAGE, “REDUCE OR REVERSE DEGENERATIVE BRAIN DISEASES,” decrease inflammation, improve circulation, regrow veins, stimulate mitochondria synthesis, and more
Stellate Ganglion Blocks have been SCIENTIFICALLY PROVEN to “reduce or ELIMINATE symptoms of autoimmune diseases” by calming the overactive immune system and decreasing inflammation. And, lions mane mushroom supplement has been SCIENTIFICALLY PROVEN to regrow brain neurons x2. And, red led near infrared light therapy has been SCIENTIFICALLY PROVEN to HEAL NERVE DAMAGE, “REDUCE OR REVERSE DEGENERATIVE BRAIN DISEASES,” decrease inflammation, improve circulation, regrow veins, stimulate mitochondria synthesis, and more
my good friend told me the first time she found out she had MS, she was in the ER, and nearly blind because of an awful flare-up. she cant work anymore, and her government keep denying her assistance. hell, even now she still fights to advocate for herself and it angers me to say that shes had more support from friends like me than her own doctors. invisible disabilities are still disabilities, and i wish doctors would take her and others like her more seriously. just know you guys are valid even if all those other people who are supposed to help you, dont think so.
My dad has ms and had to fight for it and fight for a wheelchair after. I had a feeding tube and still can't eat solid food and have a lot of problems stomach wise and various surgeries and I had to get a lawyer to get it
Stellate Ganglion Blocks have been SCIENTIFICALLY PROVEN to “reduce or ELIMINATE symptoms of autoimmune diseases” by calming the overactive immune system and decreasing inflammation. And, lions mane mushroom supplement has been SCIENTIFICALLY PROVEN to regrow brain neurons x2. And, red led near infrared light therapy has been SCIENTIFICALLY PROVEN to HEAL NERVE DAMAGE, “REDUCE OR REVERSE DEGENERATIVE BRAIN DISEASES,” decrease inflammation, improve circulation, regrow veins, stimulate mitochondria synthesis, and more
I'm almost 29, been diagnosed with MS (relapsing) for 3 years but dealing with symptoms for 5 - really neat video! Great that we're learning more about MS.
Stellate Ganglion Blocks have been SCIENTIFICALLY PROVEN to “reduce or ELIMINATE symptoms of autoimmune diseases” by calming the overactive immune system and decreasing inflammation. And, lions mane mushroom supplement has been SCIENTIFICALLY PROVEN to regrow brain neurons x2. And, red led near infrared light therapy has been SCIENTIFICALLY PROVEN to HEAL NERVE DAMAGE, “REDUCE OR REVERSE DEGENERATIVE BRAIN DISEASES,” decrease inflammation, improve circulation, regrow veins, stimulate mitochondria synthesis, and more
I've had MS for 20 years, and I'm a mathematical physicist, but as an undergraduate I worked for an immunologist doing mathematical modeling of the mammalian immune response to infection and continued that work for a decade. We DO NOT know the cause of MS. Viral infection can be a trigger for developing the disease but it is not the cause. Stress, in general, is a trigger, whether that be an infection, an injury, or even psychological stress. There are links between many different viruses and MS, herpes viruses among them and that connection was made almost 15 years ago in Europe. Yes, B cell therapies help some people, but here's the thing, you can knockout B cells in patients or CD4+ T cells and still find patients that have disease progression. This means, that we still don't fully understand the mechanism of action. You are also making the mistake of conflating correlation with causation, because at best all we can say currently is that there are correlations with certain viral infections and MS. There is no cure, there is only treatment of symptoms, and hoping to god one of the monoclonal antibody treatments works for you to SLOW down the progression of disability. You will also find that people can only tolerate monoclonal antibody treatments for so long before complications arise. I've been on 4 different monoclonal antibodies for MS, and I have a high JCV antibody titer, meaning that for myself, I have to weigh the benefit of treatment versus the likelihood of developing a fatal or near fatal complication caused by JCV infection known as progressive multifocal leukoenceophalopathy (PML). Shame on you for spreading this idea that we know the definitive cause when we do not. Even the sources you list make it clear that the ultimate cause of MS is still unknown.
I was diagnosed a few weeks ago and I was pleased to see your response to this video. It must be repeated that we absolutely do not know what causes MS and if we do not know the cause then we are probably unlikely to be near a cure. Also, I am glad that you pointed out the limitations of these MS treatments. To listen to some of these youtube doctors talk about the B-cell depletion therapies in particular, you would think that they are some sort of benign near cure and not highly risky medications with serious side effects including PML with its high fatality rate.
I lost my first wife to MS . . . actually, it was her primitive treatment for MS that did for her. Back in 1984, when she was diagnosed, they could barely test for MS (MRI was in its infancy) let alone treat it. In the last few years it's been so painful to see the rapid progress being made, years after it could have done her any good.
Thank you. I am a person with MS, and reading the posts gives me hope. Just knowing the are others out there, who had MS, at 27 and lived something of a life makes me swell up. I am so grateful to read these posts.. I ask for help: Is there an MS life guidance meeting out there? Cuz living with is MS is challenging and lonely. Love you guys and thank you for making a video like this.
Dude, I was JUST reading up on this last night! The timing of this is just 🤯 I've had 2 doctors and a nurse think I may have MS, mainly because of some blood tests, and they wanted an mri and xray, but that costed over $700+. We didn't have, still don't have, that kind of money on hand. *A chiropractor I went to 10 years ago, while doing basic nerve reflex tests, when he got to my right elbow, my left leg kicked up. I'm sure he thought, "I'm sure glad I wasn't standing there!" -Even longer ago than that, while having swim lessons, I could not make it past the halfway point in the pool, trying to swim across. My legs just stop working, and I couldn't feel them. I couldn't get 1 or sometimes both legs to move again for several seconds. Week after week, same result. So my doctor did few tests, started physical therapy, xray showed something on my lower spine but they weren't sure. Then my physical therapist just one day left and I wasn't able to go back. In 2022, I began looking for a wheelchair because I could barely walk that summer. Last year, my intestines began struggling to digest foods. I seemed to suddenly become sensitive to dairy, so began avoiding that. Strickly stuck to a low sodium, low fat diet. My blood pressure has been normal since. However the function of my intestines, isn't any better. Now I've a genetic counsler to get testing done for ataxia, however MS is another thought.
X-rays are not usually a diagnostic tool for MS, nor are blood tests. The four parts of diagnosing MS are symptoms, mri, spinal tap and SEP. Ataxia can be a symptom of MS or other neurological illnesses.
Sounds like a spinal cord issue, not necessarily autoimmune or genetic. Digestion and walking… Those can be caused by a local problem that doesn’t extend to your entire nervous system. The “something on your lower spine” is worth investigating further! These tests must cost a lot.
You should definitely try to get a diagnosis. Damage done by MS is not reversible. Doctors took too long to diagnose my boyfriend and he has irreversible brain damage, memory loss, worse balance, and other changes 😢
Try to eat probiotic fermented foods and drinks but skip the pills they don't work. You may also need digestive enzymes with every meal to help you out
Thank you for sharing this video, SciShow. My dad was diagnosed with PPMS 23 years ago. It’s a debilitating disease, but he’s stubborn as heck, which is a trait that has helped him maintain his independence all these years. It’s great to hear about all the advances in MS research.
Not me being like "yeah and?" to the part about needing everyone to get the vaccine then remembering what we just got out of and how difficult it was to get anyone to vaccinate against that. 😅
Right??? I almost think some gene modifying therapies to not have myelin cells without the identical ends. It would be so much easier to just .05 percent of people to take medication and vaccines who are experiencing something than the 99.95 percent of crazies.
Indeed my worry too, Kerona affects most people badly, but look how many people convinced enough to take the vackzine. Let alone trying to convince the whole population to take an EBV vacks, when only 0.04% of people will get MS. Most people wont care. So wont get it.
We have many vaccines for children that protects against debilitating illness. There isn't really a great option against viruses other than vaccines. Autoimmune diseases are very difficult to treat because you actually do need your immune system to work. People who don't get the vaccine but get MS will have to deal with that. The most important thing is making sure the vaccine doesn't hurt too many people who would've been fine if they didn't get the vaccine. Those are the ones for who the vaccine argument is the most difficult
One of my best friend's in high school got diagnosed with MS. She had to move to another country to get treatment because it was so expensive here in the USA. I hope they find a cure. I haven't seen her in a decade 😢
Stellate Ganglion Blocks have been SCIENTIFICALLY PROVEN to “reduce or ELIMINATE symptoms of autoimmune diseases” by calming the overactive immune system and decreasing inflammation. And, lions mane mushroom supplement has been SCIENTIFICALLY PROVEN to regrow brain neurons x2. And, red led near infrared light therapy has been SCIENTIFICALLY PROVEN to HEAL NERVE DAMAGE, “REDUCE OR REVERSE DEGENERATIVE BRAIN DISEASES,” decrease inflammation, improve circulation, regrow veins, stimulate mitochondria synthesis, and more
My mom suffered from MS for about 20 years before passing away about a year ago due to failure to breathe. Since I was 10 I had to see her lose her ability to walk, then do things independently at all, and for the last 10 years she could barely talk or move at all. I really hope we'll one day see a world where no one has to go though this again.
I'm Canadian & was officially diagnosed in Oct. 2000 and was 22 at the time, but had symptoms for about 4yrs prior to diagnosis! My dr's didn't know what the cause of it was either, so this is both uplifting & disappointing for me to hear! I'm disappointed to know, that after more than 25yrs of my life with MS, that the chance for ME to be cured, is very low... but also uplifting to know, that there still is HOPE for others to beat this awful disease! THANK YOU FOR YOUR ATTENTION TO THIS ISSUE!!
I approach this by being in as many focus groups, volunteer studies and the like under the idea that while it may not ever dramatically help me, it could help an unimaginable number of people in the future (and good karma can’t hurt)
Stellate Ganglion Blocks have been SCIENTIFICALLY PROVEN to “reduce or ELIMINATE symptoms of autoimmune diseases” by calming the overactive immune system and decreasing inflammation. And, lions mane mushroom supplement has been SCIENTIFICALLY PROVEN to regrow brain neurons x2. And, red led near infrared light therapy has been SCIENTIFICALLY PROVEN to HEAL NERVE DAMAGE, “REDUCE OR REVERSE DEGENERATIVE BRAIN DISEASES,” decrease inflammation, improve circulation, regrow veins, stimulate mitochondria synthesis, and more
i have autoimmune alopaecia -total hair loss for past 25 years, & now learning about MS , epstien bar virus, shingles etc don't feel bad about my appearance to what people with these have to go through the nightmares.
Stellate Ganglion Blocks have been SCIENTIFICALLY PROVEN to “reduce or ELIMINATE symptoms of autoimmune diseases” by calming the overactive immune system and decreasing inflammation. And, lions mane mushroom supplement has been SCIENTIFICALLY PROVEN to regrow brain neurons x2. And, red led near infrared light therapy has been SCIENTIFICALLY PROVEN to GROW HAIR FAST by increasing blood flow, increasing oxygen, decreasing inflammation an bringing hair back into the growth phase.
If you're not allowed to feel bad for having alopecia is someone with MS allowed to feel bad for having MS when there's so much worse things out there? Is only 1 person allowed to feel bad because they have it the absolute worst? ❤ Don't be too harsh on yourself ❤it's good to realize your blessings for sure but don't undermine your struggles either
Strange note to end on, when SciShow did an episode just 2 months ago suggesting that an inverse vaccine, one that makes the immune system FORGET its overactive response causing MS, was currently in phase 1 testing. If that works out, the whole "Will we ever cure this?" questions promises to get a lot simpler than the way it's discussed here. th-cam.com/video/uXZhnJfYojk/w-d-xo.html
@@Lugmillord the cool thing about those inverse vaccines is that, iirc, they potentially also reverse the effects of that overactiveness. If not, then even then it's just a matter of finding some way to restore the myelin sheath.
My sister has or had MS, she just went through the treatment that wipes out your T cells so the regenerate without the ability to destroy the myelin. After a year she has no sign of MS❤️🙏 The biggest issue with this treatment is the cost $$$
Stellate Ganglion Blocks have been SCIENTIFICALLY PROVEN to “reduce or ELIMINATE symptoms of autoimmune diseases” by calming the overactive immune system and decreasing inflammation. And, lions mane mushroom supplement has been SCIENTIFICALLY PROVEN to regrow brain neurons x2. And, red led near infrared light therapy has been SCIENTIFICALLY PROVEN to HEAL NERVE DAMAGE, “REDUCE OR REVERSE DEGENERATIVE BRAIN DISEASES,” decrease inflammation, improve circulation, regrow veins, stimulate mitochondria synthesis, and more
I was diagnosed with MS last September. As a 28 year old it was very scary and something I think about daily. As a scientist I am so thankful for hard work of thousands of bright minds that have brought us to this point. Thank you for making this video @scishow
As someone with MS, I'm really glad that I live in a part of the world with free healthcare. If I was living in the US, I'd be paying $10 a day for the medication I'm on.
Same here, I've had RRMS for 20yrs now and have been getting treatment for 19yrs via the public health system in my country, I also get annual MRIs. I've been on Interferon beta-1a, tecfidera (wouldn't recommend), and currently on tysabri which has held me stable for over 6yrs, all without having to open my wallet.
Stellate Ganglion Blocks have been SCIENTIFICALLY PROVEN to “reduce or ELIMINATE symptoms of autoimmune diseases” by calming the overactive immune system and decreasing inflammation. And, lions mane mushroom supplement has been SCIENTIFICALLY PROVEN to regrow brain neurons x2. And, red led near infrared light therapy has been SCIENTIFICALLY PROVEN to HEAL NERVE DAMAGE, “REDUCE OR REVERSE DEGENERATIVE BRAIN DISEASES,” decrease inflammation, improve circulation, regrow veins, stimulate mitochondria synthesis, and more
@@k00ijmaybe you shouldn't have voted for that guy who helped start all those wars that left us tens of trillions of dollars in debt and is currently funneling billions to the country where his son got a cushy job without speaking the language or having any relevant expertise
My grandfather had it, I remember a time when he stand up for a bit with a frame and lived at home, but as time went on he needed progressively more and more care, until he could only come home once a week and that really had a toll on my grandmother as well. Eventually he had to be spoonfed every mouth. There's no overstating what a horrible disease it is. I still the wooden dragon, bus and robot toys he handmade when I was little, when he could still use his hands
Diagnosed in 2007, but still going strong (thus far). Certainly the fatigue, pain, and weird spasms are a thing. And heat sensitivity. And a bunch of other stuff--but no walking assist yet. The hardest thing is it doesn't show at all on the surface. If I don't tell people, they don't know--just think I'm lazy or pathetic. There are just couch-recovery days that need to happen. I quit my last job because the demands were reasonable to them, but impossible to me--though frankly, I think 12 hour days on one's feet with no breaks is nuts.
In my mid 20s, male and my first relapse 2 years ago now left me permanently blind in my left eye. Within 2 days my vision in that eye went quite rapidly to black. I can now only vaguely make out shapes with this eye, even after a dose of steroids for 3 days. Horrific disease - on medication now but it feels bizarre that I have this disease that can destroy my life at any moment, any day, any hour - the sword of Damocles hanging over at all times. Will I lose my voice next? My vision completely? My ability to walk?
My first MS symptoms appeared when I was 29 years old. I was fortunate enough to have two children already. Now this year I am turning 43 I've always had the progressive version of the disease so I went from walking in about 2 years to walking with a cane for about 2 years to walking with a walker for about 2 years and been in a wheelchair ever since. Now I'm in a motorized wheelchair. I'm very happy that this research was conducted on such a large scale. However, my blood test results have shown me negative as having EBV. This disease is very tricky to understand the origins of. It seems like the perfect storm of a bunch of different factors that eventually lead to this disease. I'm not too sure if I will see a cure in my lifetime. The only thing I will say is that everyone should have access to health care because when you need it most you appreciate it,
Stellate Ganglion Blocks have been SCIENTIFICALLY PROVEN to “reduce or ELIMINATE symptoms of autoimmune diseases” by calming the overactive immune system and decreasing inflammation. And, lions mane mushroom supplement has been SCIENTIFICALLY PROVEN to regrow brain neurons x2. And, red led near infrared light therapy has been SCIENTIFICALLY PROVEN to HEAL NERVE DAMAGE, “REDUCE OR REVERSE DEGENERATIVE BRAIN DISEASES,” decrease inflammation, improve circulation, regrow veins, stimulate mitochondria synthesis, and more
I've had a very angry form of MS for 16 years and a stem cell transplant halted the disease 100%, but unfortunately the pre-existing damage was here to stay. After relentlessly investigating, it was discovered I had faulty veins in my pelvic region called pelvic congestion syndrome, which pressurized my entire spinal venous system, causing every MS symptom known. After a same day simple bilateral venous embolism, several of my symptoms went away. I can now turn my head, walk outside without sunglasses, tinnitus is gone, I can walk heel to toe, etc. I'm waiting for my 2-year mark before I make a video to share with others. Because MS is unpredictable and the placebo effect sometimes happens, I want to be sure before I share all of the details. 🧡 Stay tuned and keep faith for a cure!
i may have ms (i have an autoimmune disease for sure, and severe neuropathy that is worsening over time with my autoimmune responses), but ive never had mono (to my knowledge). even if i dont have ms, its study and curing is EXTREMELY important to the realm of autoimmunity. i sincerely hope we get ms cured. itll be a big first step in curing a ton of other autoimmune diseases.
There are other conditions with similar symptoms, it is important to get a neurologist to determine the cause. I have MOGAD, which can seem similar to MS but is different.
Any thoughts on Vitamin D having an influence on MS? It does play a huge part in how the immune system works. I've read that many people suffering from MS are deficient in Vitamin D.
I'm part of a study (called ReVIVE) through University of California in San Francisco that is testing the effectiveness of clemestine fumarate in re-myelinating damaged neurons. I've been participating in various MS studies through them since my diagnosis in 2020. I feel privileged to be contributing to such important research that could change the lives of millions
My dad best friends wife had MS she progressively got worse. She was the sweetest soul ever… it was so sad to see her get to the point where she could only move her eyes and her neck like 5-10°. She lived a wonderful life though 🧡 rest in peace to all of those who lost the battle to this horrible disease.
One of my less close friends (we're part of a group who runs workshops together every few months) relatively recently found out she had MS, as in within the last year or two. I was surprised but in a good way to hear that it's not such a big deal these days as she can get a shot every month or something like that that basically keeps the symptoms at bay, although it also clamps down on the immune system. I hope for her sake and for the sake of everyone else affected that a cure can be found, but also am happy to hear that treatments are getting better over the years!
If she's relatively mild, got early diagnosis and has access to care, the prognosis seems pretty good these days. A good friend of mine got it after a horrible car accident at 18 (maybe some kind of link?) and was in a state where his hands no longer functioned and he was nearly bed bound. Fast forward 16 years and the guy just finished renovating a house! I'm a Long Covid case and that guy, and my best friends wife both have MS and they're way more capable than I am. MS, while not curable has so many treatment options these days. Best wishes to her! I'm sure she'll have a full life.
Stellate Ganglion Blocks have been SCIENTIFICALLY PROVEN to “reduce or ELIMINATE symptoms of autoimmune diseases” by calming the overactive immune system and decreasing inflammation. And, lions mane mushroom supplement has been SCIENTIFICALLY PROVEN to regrow brain neurons x2. And, red led near infrared light therapy has been SCIENTIFICALLY PROVEN to HEAL NERVE DAMAGE, “REDUCE OR REVERSE DEGENERATIVE BRAIN DISEASES,” decrease inflammation, improve circulation, regrow veins, stimulate mitochondria synthesis, and more
Oh i have ms. I was diagnosed at like 22, been on various med for the last 6 years. I definitely think that strong treatment from the start and the prayers of my family has lead to me having pretty much no symptoms outside of my existing lesions and my inital bout of optic neuritis.
Content creators are quick to release information to sensationalize it. In order to fully understand the spectrum of information available, it would require a lot more than sitting at a computer for a weekend googling "MS".
Im interested in learning more about Lupus too. My ex had it and i honestly kinda struggled to understand it, i was always sympathetic but sometimes confused about what put them over the line for the day. Thanks for this vid too
Same, mine is MOGAD, which is similar in symptoms to MS, but the immune system targets the oligodendrocyte cells which repair the sheath. Treatment and symptoms are similar, though blindness is more common. I'm not sure about the cause though, never had mono so maybe a different virus? It's also more rare, which makes getting any kind of support hard, like there is less than 2000 cases in the US rare.
I was diagnosed with MS at 22, my treatment has been natalizumab injections every 4 weeks which certainly help but the pain and numbness around my knees don't go away. Fortunately, dizziness hasn't come back since the first attack and headaches are also rare.
Stellate Ganglion Blocks have been SCIENTIFICALLY PROVEN to “reduce or ELIMINATE symptoms of autoimmune diseases” by calming the overactive immune system and decreasing inflammation. And, lions mane mushroom supplement has been SCIENTIFICALLY PROVEN to regrow brain neurons x2. And, red led near infrared light therapy has been SCIENTIFICALLY PROVEN to HEAL NERVE DAMAGE, “REDUCE OR REVERSE DEGENERATIVE BRAIN DISEASES,” decrease inflammation, improve circulation, regrow veins, stimulate mitochondria synthesis, and more
I was wondering why if nearly everyone gets EBV why MS is concentrated in the UK in the far north, and Orkney and Shetland isles - I was told there was an established link to a lack of vitamin D in sunlight due to the shorter days in winter. But that wasnt mentioned, and it must mean that its not “just” EBV, at least not in the UK.
My Aunt Gail had this disease, rest in peace. I was too little to understand so I'm trying to forgive myself but I was scared of her, scared of talking to her. She made me so uncomfortable as a kid and it's a regret I will have to live with. I hope she didn't suffer too much, and that we can find a cure
24 year old here that was diagnosed just under a year ago… still adjusting and navigating this major shift in my life. While this gives me hope- the fear of money playing a role in accessing such a thing- makes this sound like a fantasy.
I live in an area where MS is sadly normal along with ALS and type 1 diabetes ( Sardinia ). We have one the highest concentrations in the world due to limited genetic pool and isolation. It's scary to think about it.
Uplifting to hear there's been even more progress on a cure for MS. In my 20's a close friend passed from MS-related complications. His boyfriend took his own life several days later. I will never forget him. I wish we had a cure then.
I was diagnosed in January of 2024. I was put on Briumvi shortly after my diagnosis and I haven’t had a relapse since. One thing that always hung around was my vision was sometimes blurry. I went out on a limb and tried a grounding pillowcase to sleep on. I swear to god that thing works because ever since I started using it my vision has been 100% throughout the day.
This is kinda heartbreaking. One of my brothers best friends from high school passed away just a couple years ago from MS related complications. Its great we're getting closer to curing it. But kind of heartbreaking for my brother's friend's family and friends.
Around 1980 there was a wheelchair bound teenager who said she had MS. She told me about trouble doctors had acknowledging it, but she had hope it would improve because they were just then finding lab based markers as evidence. I thought of her often. When I was athletic workaholic and got so sick and doctors said it was all in my head, that old conversation helped me keep hope that it woukd be acknowledged conditions.
Do you have it? I do and I always had the same feeling, but it may just be the Bader-Meinhof phenomenon, a frequency illusion caused by cognitive bias.
I can think of 2 people I have known that had MS. A person I worked with in high school, and my husband's grandfather (though he died before I met my husband). I could have met more because I only knew that the coworker had it because he called in sick during a flare-up, and it was mentioned.
I got MS-like symptoms after covid, even visible lesions on the MRI - it was caused by a really severe vitamin B12 deficiency. Got it fixed up, supplemented cofactors and I'm mostly recovered right now. For some reason, my ferritin, B12 and vitamin D levels were in the gutter after having COVID. If someone here is struggling with neuropathy, neurological symptoms, ME/CFS etc - get your blood tested.
This all makes so much sense and has implications for conditions like AIDP/CIDP which can be triggered by viral infections and even vaccinations, as well as for conditions like ME where every single patient I've come across with this condition have positive EBV serology and they generally all have some kind of episode in their lives where they had prolonged probable viral illness. I'm quite convinced all these conditions that cause some kind of CNS inflammation are linked. However it seems there must be some genetic vulnerability and in the case of ME psychosocial overlay that then triggers the onset of these illnesses. For example, MS occurs in much lower rates in non-caucasian populations. The highest rates are in those with ancestry from northern Europe.
My aunt got ms when she was 27. She was on the forefront of all sorts of experimental drugs and treatments. She is one of the reasons prednisone exists. She passed away several years ago, but her little brother, my uncle, was diagnosed with Ms at age 68, he's 77 now.
Currently having my second attack and it's absolutely the worst pain I have ever felt. I'm in week 17 of the worst pain of my life and would litterally cut my leg off for a cure.
Stellate Ganglion Blocks have been SCIENTIFICALLY PROVEN to “reduce or ELIMINATE symptoms of autoimmune diseases” by calming the overactive immune system, chronic pain, and decreasing inflammation. And, lions mane mushroom supplement has been SCIENTIFICALLY PROVEN to regrow brain neurons x2. And, red led near infrared light therapy has been SCIENTIFICALLY PROVEN to HEAL NERVE DAMAGE, “REDUCE OR REVERSE DEGENERATIVE BRAIN DISEASES,” decrease inflammation, improve circulation, regrow veins, stimulate mitochondria synthesis, and more
Not too long ago, I met someone with MS for the first time. They're a young, beautiful, wonderful person with humour, brains and charm in spades. I think about them often; about how they have no feeling or motor function in their hands at all (they're even very cold most of the time as a result of poor blood flow through tissue that doesn't get to move very much); about how their disease developed rapidly at first but has dramatically slowed down since their life took a turn for the better in many other aspects; about what the future might hold for them. This video brings me some hope that perhaps, someday - and perhaps even someday soon - we might see the last of this terrible illness. That said, it is a little disheartening that, while we have ways of slowing things down, there is still little to no indication we might reverse the damage already dealt. I hope that, as medical science and molecular biology develop ever further, that may at some point be a thing of the past, too.
Most cases worldwide are in North America, yes, where the water has been inundated with fluoride for years. MS sufferers are advised to avoid Floride at all costs. Hmmmmmm
The work of George Jelinek and the overcoming MS program including diet, exercise and mindfulness can't be overlooked. A 60 year evidence based study targeting saturated fats as a trigger for the autoimmune response is incredibly successful in not only suppressing the condition but also significant recovery for participants. mainstream pharma based medicine is not in favour of this study for commercial reasons but the majority of MS nurses I have met are incredibly positive about its benefits
Only in the US, but luckily other countries are also doing research and have no incentive to come up with a long term treatment rather than cure, as the governments pay for the treatment.
My father was diagnosed at 43 and eventually passed away at 56 of PML, a rare disease he got from his infusion treatments to slow his progressive MS. Hopefully there is a true cure one day for those and for their families suffering
Could something like an MS-Rhogam be effective? Rhogam is an injection of anti-D antibodies given to pregnant women that prevents them from developing their own antibodies that attack the fetus. In this hypothetical, we create an MS injection of EBV antibodies, so the body does not produce it’s own antibodies that attack the myelin sheath. I’ve never seen this idea brought up before, and I hope there’s someone out there that can tell me if this idea is feasible or not.
Stellate Ganglion Blocks have been SCIENTIFICALLY PROVEN to “reduce or ELIMINATE symptoms of autoimmune diseases” by calming the overactive immune system and decreasing inflammation. And, lions mane mushroom supplement has been SCIENTIFICALLY PROVEN to regrow brain neurons x2. And, red led near infrared light therapy has been SCIENTIFICALLY PROVEN to HEAL NERVE DAMAGE, “REDUCE OR REVERSE DEGENERATIVE BRAIN DISEASES,” decrease inflammation, improve circulation, regrow veins, stimulate mitochondria synthesis, and more
I'm part of a study (called ReVIVE) through University of California in San Francisco that is testing the effectiveness of clemestine fumarate in re-myelinating damaged neurons. I've been participating in various MS studies through them since my diagnosis in 2020. I feel privileged to be contributing to such important research that could change the lives of millions
You should be proud of yourself. I admire you.
I hope it works. I have damage from transverse myelitis that left me paralyzed.
❤
I hope it works. Debilitating illnesses like MS are horrible.
I also got diagnosed in 2020. So sincerely, thank you.
I'm 30 now and I got MS at 15. I remember my neurologists back then saying "we don't know where MS comes from, but the research is is really promising".
Seeing this video now is awesome!
I'm part of a few of those research studies 😊
Yes, finally a step in the right direction. When I got diagnosed with MS in 1996, they told me they expect a cure within 15 years...
My mother was diagnosed with MS in the mid 90s. There really wasn't a lot out there in knowledge or drug information. My mom was receiving Beta Interferon injections and it seemed to help... sort of. Mom and Dad tried all sorts of things, including bee sting therapy. It didn't directly kill her, but it did weaken her body enough that the flu did.
Hoping all is well with you, and that it hasn't been affecting your life too much.
My husband's side of the family is prone to bad reactions to EBV and there's alot of doctors in the family. As soon as my husband got EBV (14 years ago), they were worried about MS, and I was studying biotech at that point too,and remember it being something I connected to it too. Strange that the doctor daid they didn't know, but I guess they just meant they didn't know for sure, as the suspicion has been there for quite a whilr
As a 32 year old MS patient who has had MS for about 14 years and that is very poor living in the U.S. I have accepted and have come to terms with that even if a cure gets created I won't be allowed access to it since everything in this countries healthcare system is entirely based on the weight of your wallet and the size of your bank account. I have accepted this and am trying adapt to and live with the ever changing hardships that RRMS brings along
Sending you loads of strength and love. My sister was also recently diagnosed and she's around the same age as you. Treatment and medication is steeply expensive in Indian too though consultations are relatively affordable.
@@roshmimukherjee8079Thank you very much, it means a lot, I appreciate it. I wish your sister strength and send love and appreciation
Do you have any skills in engineering, medicine or programming? You could apply for a work-visum in Germany, or another country with universal healthcare.
As a fellow RRMSer your comment hurts to read, the American healthcare system sounds awful, I'm so grateful I wasn't born there. Good luck dude.
@@shareikaI do have a self-taught skill set as a computer technician and network manager but the higher education in this country is much like the healthcare system, inaccessible if you don't have a heavy wallet or large bank account, taking out student loans in this country is also not a smart move since student loans in this country are designed to never be paid off, you can't even claim your student loan debt when filing for bankruptcy. To put it bluntly, you become an indentured slave to the loan. In 2017 I sold everything I owned to attend a technical school to get certified but the money I earned from selling everything only lasted about 2 weeks, it was used exclusively for gas to get me back and forth. Even if I set it aside it wouldn't have even been enough to cover the cost of the certification exams. I would love to get certified and move out of this country but the hard truth for people in this country is that it's set up to trap the poor. Most people in this country are too poor to travel abroad, let alone move abroad
My dad had this disease all his life and died at 44, not knowing exactly what his ms was, this was the most important yet painful video I’ve seen on TH-cam. Thank you Sci-show for sharing this video. I now know a lot more than I ever could find about this disease rip dad. Shout out sci show.
❤
My dad (70 next week) also has MS. He lives in a skilled nursing facility and has been bed bound for the past few years.
@@BlakeBarrett spend as much time as you can ask him questions and write them.
Thanks for this message! I'll pass it along to the team who worked on this video.
@@SciShow Nice of you to do so. 😉
My husband has lived with MS for over 40 years. His first symptoms were when he was 17, he didn’t get officially diagnosed until 10 years later. He is on one of the disease-modifying drugs called Tysobry. It worked for him, his progression was slowed way down. When he was first diagnosed, there was nothing, really, for treatments. . He was diagnosed with secondary progressive and given a prescription for a wheelchair. Many years later, he can still walk for short distances, and he can still drive. They are calling his disease relapsing-remitting now. He has a plethora of symptoms, including pain, tinnitus, fatigue, spasms-the symptom list is quite long, but he functions well and participates in his own life to the best of his ability .
It’s a terrible disease, but there is more hope now than ever.
My youngest daughter also has it, although quite mild. I’m mentioning this to remind people that there is a genetic component as well.
It's remarkable how far we've come.
My grandfather had it, so the genetic deck is not stacked in my favour
I'm in the diagnostic process for it now and it is highly likely I have it, based on my MRI and symptoms. Assuming I end up being diagnosed with it as my neurologists and I suspect, I will likely pursue sterilization. I know studies supposedly show there isn't any evidence proving there's a genetic component but I know of too many people who have MS who have a family history of it so I wouldn't want to take any chances.
If the development of MS is caused by a protein in your neurons being identical to that of the virus, then it stands to reason that the gene causing your body to produce that version of the protein is the main risk factor, yeah.
@@zonderbaar These can only help but will not cure or control the disease.
I am 35 and was diagnosed with MS on Halloween 2019, and have been on all three B-cell targeted DMTs (disease-modifying-therapies): Tysabri, Ocrevus, and currently Kesimpta. It absolutely blows my mind how far research has come with MS treatments even within the last few years, and I am so so so grateful to all the scientists who work on this terrible disease. Thank you SciShow for shedding more light on MS! ❤️
Kesimpta has been a Godsend for my wife. She's come a long way since Copaxone back in the day.
Btw, you should look into Lion's Mane mushroom... it's been shown to regrow damaged nerves. Anyway, God bless and be well!
Did any of these three medication you took help? Especially with the fatigue symptoms?
Pure strict raw carnivore diet can literally cure all diseases.
@@CrochetNewsNetwork modafinil is what my neurologist has me on for the fatigue and brain fog associated with MS. It's been fairly effective so far with the side effect of seeing shadows or things moving on the edges of my vision that are not there.
@bass777chick.
Scientists are not working on the problem of eradicating MS. They just want to produce another toxic drug for the pharmaceutical companies. There is no profit in making people healthy.
I lost my dad in 2004 to MS. I took care of him in his last years and even i had to put off school and honestly was never really able to go back, but i wouldnt trade it for anything. Taking care of him taught me so much about him, myself and and our relationship as a whole. He passed when he was 28. I am now 40 and a colon cancer survivor. My dr found a baseball sized tumor in my lower colon in 2015 and i habe been cancer free ever since. So I know he watches over me. I just miss him so damn much.
He are really a hero man , more faith 🙏
Wish me luck too , I too was diagnosed with ms in 2013 dec and going on with my life since
🙏🏼
Wait...he couldn't have passed at age 28 in 2004, with you having been caring for him and putting off school, if you are now 40 in 2024. So, you would have been 20 when he passed. So, unless he had you when he was 8 years old, that typo is probably off by 10 years. I'm guessing he was 38 years old when he passed in 2004, not 28 (38 is still so young though). So, by deducing the math, with a correction of assuming he was 38 when he passed, you were born when he was 18, and you were 20 when he passed and had already been caring for him for 2-3 years which put you either in your last year of high school or shortly after when you started that care. Or, the typo was that he passed when you were 28? No, that math doesn't work either because he died in 2004 and you are 40 in 2024. I'm confusing myself! lol
In any case, you have survived colon cancer for nearly 10 years already (getting colon cancer around the age of 30 is really young to get that, wow). I now see how he must have been watching over you to have found that giant tumor in time to save you. That is just beautiful!
It gave my heart a big, warm hug when you said you wouldn't trade those last few years of caring for him for anything. It feels so good to know that your relationship with him provided you with lessons that very well may have had an even bigger impact on your life than those extra years of college learning. Those are real life skills. The ones you can't learn in school. The ones that direct you, shape you, help keep you grounded and living as your authentic self.
I'd wager that whenever you need to make an important life decision, your mind goes back to those last years with your Dad, and in those memories you would find the answer to your decision. At least that's how I imagine it happening. Not that I've ever experienced something like that myself. Regardless, the way you wrote your story really resonated with me. Thank you for sharing those words and I'm so sorry he's not with you, here on earth, today and that missing him is so painful.
Here's to decisions made by the heart, of loving someone enough to sacrifice for, and knowing he would have done the exact same thing for you! Cheers, mate.
Really great to see MS being mentioned here as not much people know about this autoimmune disease.
Yep and yet it's the most common neurogical disease in young and middle age. Over 100000 in UK alone
I think more will, given the US MS Society recent behaviour.
In Australia, Ireland, US, and Canada MS Readathon is the primary way children first learn about MS.
It really is, barely hear about it over here in Canada unless A&W restaurants are doing a charity drive for it or you go seek that information out yourself
It depends on where you live. Here in northern MN, we hear about MS and ALS a lot. Apparently, both diseases hit MN hard, I guess?
My bio mom died 2 years ago after having MS for over 30 years and living in a home. She was so unwell she lost mobility and memory, which was also because of dimentia. I had to be adopted at birth because she was unfit to parent. It was horrible to grow up seeing her all the time but unable to care for me. She deserved a better life. I am happy to see this video and it gives me hope for those who live with it now. I wish all a healthy happy life and that the cure will come soon.
I am so sorry this happened to you. My brother has severe MS and it is heartbreaking to see the decline. I really hope people don't have to experience this in the future too.
@tistrisha
What a strange way to refer to your mum, as "bio mum". That's like me referring to my dad as "my sperm dad"!
@@redblade8160 Referring to your biological parents and adoptive parents with different terms is totally normal though, nothing strange about it.
@@SentinalhMC
I don't know what strange place you come from, but people don't refer to their biological parents as "bio mum or bio dad". They either say, my mum or my dad.
@@redblade8160If someone had adoptive parents who they refer to with mom or dad, it can get confusing whether they're talking about their adoptive parents or biological parents. So it's quite common to use the "bio" marker for talking about the biological parent
I’m a 16 year old, diagnosed this year with MS. My mother has it, as well as some aunts on her side. I already use mobility aids in school (cane, crutches), and my symptoms sort of come and go. I love Scishow, and although it’s a lot, and terrifying, it’s awesome to see it talked about on here! It’s a comfort, and I thank you for that. Getting my first infusion of Ocrevus on the 12th! :D
Edit: Thank you for the kind words. Happy MS awareness month! 🎗🧡
(Misspelled the medication lol oops.)
I hope it works for you! All the best to you. One of my cousin's with MS had a very aggressive start, but all of a sudden her progression all but stopped for over a decade and has untill now only picked back up very slowly.
I hope something like that for you too, and all with MS, while we wait for science to crack more codes for you ❤
All the very best to you!
Good luck with the new medication! I was diagnosed with MS 10 years ago and it's amazing how science and medications have advanced even since then. For the first few years I had to inject myself every week, but have now been using oral medication for a few years and will soon get to try Cladribine and see if it suits me. Fingers crossed for both of us and let's keep fighting! :)
@@lilian1987 thank you!!! Fingers crossed. I wish you nothing but the best on your journey, and hope one day we’ll have a cure 🧡🎗
I hope the medication helps! ❤
Oh, best of luck with the new medication! And in the meantime, as long as it’s your taste, don’t forget to decorate the crap out of your mobility aids. I don’t allow boring clothing in my life, and I’m sure not allowing boring mobility aids either. Patterned duct tape, rhinestones, e1000 glue… there are so many options!
I've had MS for 37 years. I am still able to work, walk and dance. The only times my illness became aggressive was twice when I went on low fat diets (one for weight loss, another time to be a vegan). I now eat an animal based diet and feel pretty good for a person with a long history of MS.
Look up Dr Lee Merritt see what she says about MS
Vegan diets aren't always low fat, been vegan for years and it doesn't make it worse for my ms. My neurologist said to just have a heart healthy diet because you're still prone to other things like heart disease. Diet can't do anything for ms
But a higher fat vegan diet would be heavy on Omega 6 oils which is known to be inflammatory and to increase cancer risk. In any case, for me the saturated fat seems to be important. Myelin is synthesized from cholesterol so a low fat and hence low cholesterol diet is likely to be suboptimal for brain health.@@belalugosisdead4444
I'm just gonna say this. Don't fckin quit on animal based diet. It is the most nutritional and mineral dense food. New researches show that animal diet literally helps people beat numerous diseases. It's as if we were meant to eat it... And we did for thousands of years until 21st century and all the low-fat, vegan nonsense.
So Dr. Swank and Professor George Jelinek are wrong about Low saturated fat diets for MS? Low fat diets have been the only thing to help a lot of people with MS.
I was diagnosed in 2019, when Ocrelizumab was still quite new. With this treatment, coupled with a strict approach to diet and exercise, I have been relapse free since treatment began.
After not being able to walk, talk, see or feel properly, I can't help but acknowledge this as a huge blessing.
So after 2019 you have got no symptoms ?
Would you mind sharing your diet approach with us?
Diet?
@@waveril5167doing a keto diet improved my MS so severely I can’t believe I didn’t try it sooner
@@waveril5167 yes, diet can be very important for MS patients for example mediterranean diet has a lot of anti inflammatory benefits which are optimal for people with MS
I’m a 40 year old MS patient and was diagnosed 17 years ago. This disease is a curse. You have to live life one day at a time and never know what might happen next. My nerve damage is to the extent that I can’t feel anything from the tips of my toes up to my knees. I can’t feel my fingertips. My doctors are calling it peripheral neuropathy. It’s extremely hard to get around and I have to burden my family with doing things for me that I should be able to do. I’ve tried various treatments that don’t stop the progression of this disease. I’ve come to terms that it will eventually kill me. I wouldn’t wish this curse on anyone.
@@markbothum4338 copaxone actually gave me problems and sped up my symptoms and relapses. I’m glad it’s working for you though! I’ve yet to find a therapy that works for me. And so we just go on the best we can. Every day is hard but there are harder days out there so I try to stay positive
B-1 works pretty good for my PN.
I am with you there. My hand has been numb since June of 2023, and I've had neuropathic pain since then as well.
@@georgielol I’m sorry you have to deal with related symptoms. Not being able to feel parts of your body makes life difficult. You don’t realize how much you use your hands until you can’t feel them. Plus adding pain into the equation doesn’t help. I wish you well
@@adristein84 Thanks. I hope you are okay as well. It's really been difficult to get used to not feeling anything in my hand but I've somehow managed to adjust, and some things I just can't do anymore (I don't write with my right hand anymore).
I got diagnosed at 25, I'm now 32 and it has been one heck of a ride. I'm so glad to hear about this research. Stay strong fellow MS warriors!
Sir if you can tell me , what were your initial symptoms and is it rrms? And what treatment you took ? How costly is it for you?
@@mr.ks.6499 I had a seizure (which is rare for MS) and the ocasional numbing. Confirmed by spinal tap. I've been on Avonex for 8 years, and my RRMS has been mostly stable so far, so I've been lucky.
You too!!!
I am currently having one of those MS attacks. My first one since my diagnosis. So I am loving all this news.
Same, and it sucks, both mentally and physically.
Here's to getting healthy again 🤜
I'm curious, how did you get diagnosed with MS if you didn't have any attacks/symptoms prior to this?
And yes, best of luck with the flareup, hoping it passes quickly with no lingering effects!
@@oksanakaido8437 I have had symptoms before. The issue that got me diagnosed was an infection of the optics nerve for my left eye.
This current one is simply the first one I have had since my Diagnosis.
Stellate Ganglion Blocks have been SCIENTIFICALLY PROVEN to “reduce or ELIMINATE symptoms of autoimmune diseases” by calming the overactive immune system and decreasing inflammation. And, lions mane mushroom supplement has been SCIENTIFICALLY PROVEN to regrow brain neurons x2. And, red led near infrared light therapy has been SCIENTIFICALLY PROVEN to HEAL NERVE DAMAGE, “REDUCE OR REVERSE DEGENERATIVE BRAIN DISEASES,” decrease inflammation, improve circulation, regrow veins, stimulate mitochondria synthesis, and more
@@oksanakaido8437
It's a collection of symptoms that the doctor will assess over time. They may not occur all at once.Like maybe blurry vision, hearing problems, weakness in arms or legs, prickly pains in the limbs. Just examples. My daughter was diagnosed 14 years ago when she was 27. She was telling her doctor about her symptoms for a couple years until he agreed to have her see a neurologist, who then had a lumbar puncture done. It was then they found the cause of her problems.
I got diagnosed with MS at 33, I'm 46 now and its really starting to kick into high gear with me recently losing the effective use of my right hand and arm (being right handed this especially sucks!) and I am also beginning to lose sensation in my feet. Coupled with crippling fatigue, bouts of dizziness, optic neuritis etc etc... its about as much fun as it sounds! This research is promising in that it will hopefully prevent people in the future having to experience what I am, and I by no means have it the worst! Sadly for people like me experiencing the effects of nervous system damage I don't think this research is much use, but it does mean there's maybe a brighter future in store for upcoming generations!
Damn dog.
I recently found some studies on MS treatments looking at certain antifungal medications for their ability to stimulate the body's own stem cells to remyelinate the nerve fibers. These are still in early phases, (the oldest one I saw was from 2015) but they are showing promising results. If they can isolate the effective part of the drug, there may be hope in reversing the damage caused by MS. Hang in there greenmoose.
Sir I pray for your faster recovery , I understand sorta because I was diagnosed with ms 11 years ago from now and have seen many things , more power and faith sir ,it's really necessary
@@whelper4231please give the link to the study
As someone who was diagnosed with MS back in August, I'm excited to hear SciShow saying progress is being made.
Can I asked how you got diagnosed?
@@tistrishaIt started with fatigue that wouldn't go away, which was just dismissed as overworking/overheating, but then I lost feeling/strength on my entire right side, so I went to the ER and they took an MRI, which showed the lesions on my brain and spine. Then they did a spinal tap just to confirm it wasn't lyme disease.
Can I ask you a personal question about your diagnosis?
Can you remember having your first symptom of numbness, was it this last time or years before? Regardless either one of those, if you looked at your medical records would you notice a vaccine you took just before you started to feel your first numbness, like a few weeks to a couple months? Not the covid vaccine but a regular one like Tetanus or something?
@@JollywoodJoelThe first time I had the numbness was within a week of the fatigue, back in August. It was my first flare-up, and it wasn't really anywhere near my last vaccine, which I think was a flu shot over a year prior to my symptoms showing up.
@@thegothemperex okay, i was just seeing a connection cuz I found out a doctor claims (on CDC site) that certain vaccines (not all) can create MS and other autoimmunes but if it's been over a year for you, probably not in your case but mine was less than a month after my first vaccine as an adult and I was 29 when I got the TDAP shot. I was just curious.
This has me really excited. But not for the reason you think.
See - you've missed an angle entirely! EBV is an airborne infection.
The things we do to prevent airborne infections *also* prevent EBV infections, and thus *also* prevent MS!
One of the most exciting reasons I work as a tiny part of a group of 80+ doctors, scientists, engineers, and activists, on the airborne mitigation aspect of *COVID* pandemic response is that providing clean indoor air is essentially 100% effective at preventing airborne disease in the same way as providing clean water is 100% effective at preventing waterborne disease.
And y'know what? We *already* have the tools. Good ventilation. Basic stuff like ERVs and smart controls. Improved filtration - slots right in for the most part, and portable supplementation as a temporary fix where needed.
That's the beauty of it. But shamefully, we've completely failed to do this part of pandemic response in any meaningful way. That's the tragedy - we really learned nothing there.
But slowly, we're trying to shift the winds of change.
Yet so many people stopped wearing masks
Thank you for revealing that EBV is an airborne infection. I hate that EBV is know as 'the kissing disease" when no one I kissed in 2016 had mono but I still ended up sick with it.
It’s been confirmed and cited that it transfers via saliva and other body secretions. It’s not a misnomer. It can become airborne but isn’t exclusively. The thing is it’s so easy to get even as a small child and older that kissing or no, it would be so hard to track down where you got it from even if you never kissed anyone or did kiss someone.
Can you post a link for more info please?
That’s amazing!!! I’ve heard of so many trials being done and I’m glad that even though it isn’t as prevalent as some diseases there are people absolutely dedicated to figuring it out. Right now it seems symptomatic treatment is all anyone does, and don’t get me wrong, treating massive seizures and whatnot is HUGE! I hope one day it won’t be such a scary diagnosis 💕
I did a presentation on this military study and the latest evidence on MS and I was looked at crazily with the same information included here. Looks like I need to forward this video to them.
An MS mention on Scishow? My mum has it- great to see it being talked about :)
My dad has it too
I have it (although undiagnosed and waiting for one) it's nice to hear it talked about without people talking about it like an instant death sentence like it's marburg variant at least in my circle
My hubby and his mom have it. I am surprised they didn't mention the genetic link.
I don't have MS, but have rheumatoid arthritis which is also an autoimmune disease. There are several people in my family with RA, and others with lupus. I feel like any advance in research on autoimmune disease will benefit us as well. I hope those with MS do get a cure.
Stellate Ganglion Blocks have been SCIENTIFICALLY PROVEN to “reduce or ELIMINATE symptoms of autoimmune diseases” by calming the overactive immune system and decreasing inflammation. And, red led near infrared light therapy has been SCIENTIFICALLY PROVEN to HEAL NERVE DAMAGE, “ decrease inflammation, improve circulation, regrow veins, stimulate mitochondria synthesis, and more
Wishing you the best as well. One of the teenagers in my family has rheumatoid arthritis so I know of the challenges involved with that condition.
It's amazing how far they have come with this. My mother was diagnosed in 85 when she was in her mid 30s, which was really rare at the time. They also traced it back to high school for her before her symptoms really manifested. At the time there was no definitive diagnosis. It was most of a rule out diagnosis instead. I remember them taking a large section of nerve from her calf and using it to test how the impulses traveled to decide if that's what she had. It took her more than a year for a full diagnosis. One doctor even told her that her symptoms were all in her head. To see that were are getting definitive answers is amazing. Thanks for this video, it was really interesting.
How is she how the treatment went ?
@@mr.ks.6499 Unfortunately she has progressed to where she can't really walk more than a few steps on her own. MS causes lesions in the brain and she has several So we are going down an early dementia path at this point. But we are also 40 years in at this point as well. But, in all honesty, I feel she got very lucky because she has never been bed bound. She had/has progressive regressive type and she had a lot of periods of regression where her symptoms were significantly less. Her MS has always been manageable, which is better than so many people.
I'm now almost 50 and got my MS diagnosis more than 10 years ago. At the time I wasn't given much encouraging news, they didn't know what caused it, couldn't cure it and could only help me deal with it's effects. But science marches on, thank god.
This is really important to me. My Bis-Zia(great aunt)Died some years back she was diagnosed when she was 50 and after 5 years she was fully bed-ridden, and lived like that til she was 67+. I can't fully remember because she was bed ridden for 10+ years and I started losing count.
But God Damn do I respect that, she is one of my absolute heroes for being able to live like that for so long, let alone at all.
Zia Marcella is the most badass of a person I will probably ever Know, and as much as I wish there was a cure or preventative measures for her when she was a live, I just hope now that we will get to a cure and vaccine sooner so no one else has to go through that.
Please do one on Chtomic Fatigue/post exertion response autoimmune diseases!
It's so hard for people to grasp the concept that someone can be "allergic" to physical activity.
My partner has the post exertion malaise from covid last year, the only thing you can do it nothing from the research we did, exercise is bad! And she is actually now slowly getting better.
I know PEMS has been covered in at least one long COVID show, but I don’t think there’s been a specific ME/CFS with PEMs episode. The thing is, SciShow generally needs a “hook,” often new research… so it might be a bit before something comes up. But I have PEMs (my diagnosis literally hinged on whether I was more tired or sore the day I was at the rheumatologist - he literally said if I hadn’t been in so much pain he would have diagnosed me with CVS/ME instead if fibromyalgia. 🫤), so I keep an eye on the research, and will definitely make sure anything new and interesting is passed along to the right people!
Epstein-Barr can cause Chronic Fatigue Syndrome!
There is a video on the 3 phases of long covid that is extremely helpful.
Yeah EBV caused these for me. Now I am diagnosed under the umbrella term "fibromyalgia." Some medication and herbs allow me to get actual deep sleep so my general fatigue has improved immensely. I know it's not that easy for everyone, but I realized that for yeeeears I wasn't actually sleeping due to EBV, and that caused so many of my issues.
My friend died of MS last year. He had PPMS and the drugs did nothing to help. From riding motorcycles cross country to being bed ridden 3 years later, to burying him after 5 years. It's devastating to watch.
When did he got it how bad was it didn't any thing worked
What exactly about the MS killed him?
I have long been interested in autoimmune diseases, ms is on both sides of my family.
MS is more common among people with roots in northern Europe. Some researchers in the UK were examining bones of people who died around the time of the Black Death. What they found was that people who survived the Black Death were much more likely to have the genes implicated in autoimmune diseases. People without those genes were more likely to have died from the Black Death. Therefore, the Black Death created a bottleneck where the population was much more likely to have genes for autoimmune diseases. It doesn't help with a cure, it does help explain why some pockets of population are more likely to manifest autoimmune diseases.
There’s a sci-show episode about this!
Interesting!
@@laurencolburn5495 Really? Do you know what it's called or have a link? I'd be interested in watching that.
People originating in northern Europe are more likely to live outside of 30 degrees from the equator so will need to take vitamin D orally during at least some part of the year. Lack of vitamin D is also thought to be a contributing factor to immune diseases.
I don't think this is the full story tho, and maybe just a super small factor tbh. Autoimmune diseases are also very common among second generation immigrants. As their genetics are more adapted to a different environment/ecosystem. I know several latinos and those with mostly native American DNA that have MS.
@MBTIology the black death plague largely affected Europe and Asia in the mid 1300s. I'm not sure it had similar affects in the Africa n and s America.
I’m 60 yrs old and have had MS since 1993, 31 yrs. Still hoping for that cure but any progress is good news.
🤞🏻😌🤞🏻
Stellate Ganglion Blocks have been SCIENTIFICALLY PROVEN to “reduce or ELIMINATE symptoms of autoimmune diseases” by calming the overactive immune system and decreasing inflammation. And, lions mane mushroom supplement has been SCIENTIFICALLY PROVEN to regrow brain neurons x2. And, red led near infrared light therapy has been SCIENTIFICALLY PROVEN to HEAL NERVE DAMAGE, “REDUCE OR REVERSE DEGENERATIVE BRAIN DISEASES,” decrease inflammation, improve circulation, regrow veins, stimulate mitochondria synthesis, and more
Doing research on Long Covid made me discover the effects that viruses can have on the body, including MS and EBV. It's heartening to see progress being made for MS! I think the sooner people shift their understanding of viruses from being just acute infections to being associated with longer-term changes and chronic conditions, the better we'll be able to help people living with such debilitating conditions, including MS and ME/CFS. Especially with Covid reactivating latent EBV in so many people.
ME/CFS is caused or triggered by ebv, enterovirus, flu, long covid, chronic Lyme. Causes looks similar to MS
That’s an interesting theory as to why some people got neurological symptoms from Covid &/or the Covid vaccines.
The immune system is great until it over reacts due to molecular mimicry.
@@jbmurphy4 long covid like chronic Lyme and ME/CFS is caused by an infection not by a vaccine. Vaccines lowers the chances of death and long covid
@@jbmurphy4Yes, from the research so far autoimmune issues are so common it definitely seems like a significant factor. People develop not only neurological symptoms but new allergies to everything, and improve with antihistamines. Though they've also found biomarkers confirming that there's a leaky blood-brain barrier involved as well, and autopsies have found viral reservoirs in the brain too. What's interesting is that some patients' symptoms seem to be driven mostly by the overreacting immune system, which is why vaccines make everything worse, but other patients seem to get better with vaccines, suggesting viral persistence is more at play. And there are those with depleted T cells according to CD4/CD8 tests. The body is so complex.
@@Seikufu I’ve developed a bad hive allergy in the last year. Antihistamines work for it but the doctors I visited said it was unrelated to covid, I’m not convinced though!
I’ve heard the leaky brain & also gut barriers are more common in people with hyper mobility (which seems to be genetic). So that might be another genetic factor to add to the mix.
Look mom they made a sci show video about my swiss cheese brain! Thank you sci-show, I'm trying to get diagnosed for it right now but it's been really difficult so this cheered me up
omg, thats exactly what i did too xD
Hang in there. Took 3 years and another serious flare to get my diagnosis confirmed, but afterwards the treatment plan has been remarkably effective, going on 15 years now. Also, my brain's 'swiss cheese' holes have actually _decreased_ in size on my last MRI.
I'm currently trying to get doctors to take me seriously. But it runs in my family so I've seen these symptoms before . I'm so tired of fighting the medical system.
I thought the Swiss cheese brain disease was Mad Cow/CJS. MS just strips the insulation off the nerve wires and makes them short circuit.
@@katiekorell9776 If you’re female, you might want to hire a medical advocate to help you out… especially if you can find a male one. Depressing, but they can be very effective.
My husband has MS and it affects him worse in the winter. Thank you for sharing this on MS. It could one day help those with the disease.
My husband has MS and its the summer that's horrible for him. Winter is his calm time.
My mom had it, and she found it was extremely temperature sensitive. Little too cold or warm, and she was collapsing. Sucks because we live in Arizona, a land known for being more than a little too warm.
If he doesn't take a largish daily dose of vitamin D during the winter, it might help him to do so. Apart from ultraviolet light (which is the way you get your vitamin D intake during summer) it's suspected that infrared light also helps the immune system so that might be something to try as well. Apart from these specific needs of the immune system, any kind of white light can positively affect health during the winter by helping regulate the biological clock.
I have fibro and winter is miserable, the cold penetrates down to my bones and everything aches and I get stiff. I live in my heated blanket.
Take vitamins D and K
This is a common way of talking about RRMS that drives me nuts. No you're not "basically fine" between attacks - you have to live with the new symptoms that the last attack caused, cumulatively, for the rest of your life. It's wonderful that we have disease modifying therapies now but too many people don't get them early enough in the disease progression because of our broken healthcare system.
Keep in mind that with “less broken” healthcare systems such as universal healthcare, you are instead not given treatment. I was in the ER 3 times before they let me see a neurologist. Before that, it just wasn’t “bad enough” to warrant 15 minutes of his time. I have a whole bunch of brain and spinal lesions now, and I have a hard time imagining life if I were diagnosed earlier when I first had trouble walking. How much more of my brain would I still have? I will never know, because in universal healthcare you aren’t treated until it’s too late. That’s the principle, not an exception.
@@TumblinWeedsI feel like this could happen just as likely in the US, despite the “more money” and “higher quality”. Not having the money to continuously check up on ur own health sucks
@@emmanuelperez3019 i hate how americans have this 'well actually, we have it the WORST' attitude. do you realize there is countries with less instances of MS where the people get absolute crap medication from the 80s (if they can even afford it) and since the most of the newer DMT manufacturers won't make enough money, they don't even bother sending it there. first world people complaining so much when there's people where i'm from who'd kill to even have ONE thing you people constantly take for granted. you DO have it better. while it's not perfect (nothing is) it still is largely better than what so many other people are dealing with in this moment. gain some perspective for once in your coddled lives, seriously.
I have RRMS and have been receiving an Ocrelizumab infusion for the past few years with amazing results. Thanks for coving this!
My old boss and AP director are both taking the same thing and both are doing great! Amazing drug.
Is it different from retuximab
Been living with MS for 16+ years, and I find this interesting. I know there was JC virus talk for a long time, especially since it added risk with certain treatments.
For the record, I've never had mono, but there are things I can trace back to my teen years (diagnosed at 27) which hindsight tells me was part of MS before it started becoming a problem.
Definitely looking forward to what can happen in the future with this. I think the biggest trick is going to be repairing damage already caused.
The thing is there's a 90% chance you have had Epstein Barr which is one of the diseases that can cause mono but doesn't always lead to mono.
If you have EBV as a child you might not have even had noticeable symptoms or they were symptoms so mild you didn't know you were sick. I think you have 25% of developing mono from EBV but that's only if you're infected as a teenager or adult. So if you were developing the first symptoms of MS as a teenager then that would point to a childhood EBV infection which is unlikely to lead to mono.
I recently came across studies investigating some effectiveness of certain antifungal medications on MS nerve damage. The drugs somehow stimulate the body's stem cells that can remyelinate the nerve fibers. The earliest study i saw was from 2015, so they are still rearching the mechanism, but there may be hope in rehabilitation.
Glad to see SciShow mentioning MS and being a level headed voice on TH-cam. My mother died at 53 due to complications related to her having MS. Hopefully fewer families will have to struggle with disease in the future.
Stellate Ganglion Blocks have been SCIENTIFICALLY PROVEN to “reduce or ELIMINATE symptoms of autoimmune diseases” by calming the overactive immune system and decreasing inflammation. And, lions mane mushroom supplement has been SCIENTIFICALLY PROVEN to regrow brain neurons x2. And, red led near infrared light therapy has been SCIENTIFICALLY PROVEN to HEAL NERVE DAMAGE, “REDUCE OR REVERSE DEGENERATIVE BRAIN DISEASES,” decrease inflammation, improve circulation, regrow veins, stimulate mitochondria synthesis, and more
My dad was diagnosed with MS when I was around 3, died not long after at 10, so it obviously progressed quickly. Apparently it's different from patient to patient. Naturally, this had a profoundly negative impact on the whole family, and my home life was kind of a nightmare for many years leading up to and after the death. Directly or indirectly, it ruined mine and my siblings lives for a long time. I'm not on speaking terms with 2 of them, to give some indication.
Since then I've always been pretty terrified of the disease, understandably I guess. News like this gives me some ease, if only a little. Softens my existential dread from contemplating diseases like this.
My sincere condolences, it's so sad and unfortunate that a terrible illness can contribute to estranging family members.
I wanted to say something to cheer you up. But really, I don't know what to say other than I am so sorry for the loss of what seems like your entire childhood and family connections. I can only relate in that I have been estranged from my family for over 35 years. And it was, for the most part, the best decision I ever made. Family can be whoever you make them. I've learned that good friends who love you are just as good of family members as a blood family. That's all I got. I wanted to offer more but I don't have any magic words that would take away your pain. I so wish I did. But I will send you a silent hug and maybe you'll feel it, wherever you are. Blessings to you!
@@Yosetime Thanks man, I appreciate the thought, and sending good vibes to you too. I think I made it sound more miserable than it is - like you I consider the severance of those familial ties to be unfortunate, but ultimately a net positive. I'm still on good terms with some family members, as well as close friends who I consider family.
Anyhow, didn't mean to pout. Everyone's got a story, this ones mine, is what it is. As long as you take the right lessons from it, well, it doesn't suddenly make it _good_ but not a total loss, right?
@@jsaunders2152 Thanks mate, appreciate it. It is unfortunate, hopefully one day diseases like this will be a thing of the past.
I'm 31 and have been dealing with MS symptoms since I was 19, though it took a looong time to get diagnosed. Thanks for this video, guys. It's always a thrill to have something that you can watch which feels more personal.
Stellate Ganglion Blocks have been SCIENTIFICALLY PROVEN to “reduce or ELIMINATE symptoms of autoimmune diseases” by calming the overactive immune system and decreasing inflammation. And, lions mane mushroom supplement has been SCIENTIFICALLY PROVEN to regrow brain neurons x2. And, red led near infrared light therapy has been SCIENTIFICALLY PROVEN to HEAL NERVE DAMAGE, “REDUCE OR REVERSE DEGENERATIVE BRAIN DISEASES,” decrease inflammation, improve circulation, regrow veins, stimulate mitochondria synthesis, and more
MS heavily runs in my family on my mother's side. I am grateful for the continuing research on the issue that has impacted so many of my relatives.
Stellate Ganglion Blocks have been SCIENTIFICALLY PROVEN to “reduce or ELIMINATE symptoms of autoimmune diseases” by calming the overactive immune system and decreasing inflammation. And, lions mane mushroom supplement has been SCIENTIFICALLY PROVEN to regrow brain neurons x2. And, red led near infrared light therapy has been SCIENTIFICALLY PROVEN to HEAL NERVE DAMAGE, “REDUCE OR REVERSE DEGENERATIVE BRAIN DISEASES,” decrease inflammation, improve circulation, regrow veins, stimulate mitochondria synthesis, and more
Thank you for sharing this video... As an MS patient for 21 years, it's promising to know how much research has advanced in recent years.
my good friend told me the first time she found out she had MS, she was in the ER, and nearly blind because of an awful flare-up. she cant work anymore, and her government keep denying her assistance. hell, even now she still fights to advocate for herself and it angers me to say that shes had more support from friends like me than her own doctors. invisible disabilities are still disabilities, and i wish doctors would take her and others like her more seriously. just know you guys are valid even if all those other people who are supposed to help you, dont think so.
My dad has ms and had to fight for it and fight for a wheelchair after.
I had a feeding tube and still can't eat solid food and have a lot of problems stomach wise and various surgeries and I had to get a lawyer to get it
Stellate Ganglion Blocks have been SCIENTIFICALLY PROVEN to “reduce or ELIMINATE symptoms of autoimmune diseases” by calming the overactive immune system and decreasing inflammation. And, lions mane mushroom supplement has been SCIENTIFICALLY PROVEN to regrow brain neurons x2. And, red led near infrared light therapy has been SCIENTIFICALLY PROVEN to HEAL NERVE DAMAGE, “REDUCE OR REVERSE DEGENERATIVE BRAIN DISEASES,” decrease inflammation, improve circulation, regrow veins, stimulate mitochondria synthesis, and more
I'm almost 29, been diagnosed with MS (relapsing) for 3 years but dealing with symptoms for 5 - really neat video! Great that we're learning more about MS.
Stellate Ganglion Blocks have been SCIENTIFICALLY PROVEN to “reduce or ELIMINATE symptoms of autoimmune diseases” by calming the overactive immune system and decreasing inflammation. And, lions mane mushroom supplement has been SCIENTIFICALLY PROVEN to regrow brain neurons x2. And, red led near infrared light therapy has been SCIENTIFICALLY PROVEN to HEAL NERVE DAMAGE, “REDUCE OR REVERSE DEGENERATIVE BRAIN DISEASES,” decrease inflammation, improve circulation, regrow veins, stimulate mitochondria synthesis, and more
I've had MS for 20 years, and I'm a mathematical physicist, but as an undergraduate I worked for an immunologist doing mathematical modeling of the mammalian immune response to infection and continued that work for a decade. We DO NOT know the cause of MS. Viral infection can be a trigger for developing the disease but it is not the cause. Stress, in general, is a trigger, whether that be an infection, an injury, or even psychological stress. There are links between many different viruses and MS, herpes viruses among them and that connection was made almost 15 years ago in Europe. Yes, B cell therapies help some people, but here's the thing, you can knockout B cells in patients or CD4+ T cells and still find patients that have disease progression. This means, that we still don't fully understand the mechanism of action. You are also making the mistake of conflating correlation with causation, because at best all we can say currently is that there are correlations with certain viral infections and MS.
There is no cure, there is only treatment of symptoms, and hoping to god one of the monoclonal antibody treatments works for you to SLOW down the progression of disability. You will also find that people can only tolerate monoclonal antibody treatments for so long before complications arise. I've been on 4 different monoclonal antibodies for MS, and I have a high JCV antibody titer, meaning that for myself, I have to weigh the benefit of treatment versus the likelihood of developing a fatal or near fatal complication caused by JCV infection known as progressive multifocal leukoenceophalopathy (PML).
Shame on you for spreading this idea that we know the definitive cause when we do not. Even the sources you list make it clear that the ultimate cause of MS is still unknown.
I hope they respond to your comment.
I was diagnosed a few weeks ago and I was pleased to see your response to this video. It must be repeated that we absolutely do not know what causes MS and if we do not know the cause then we are probably unlikely to be near a cure.
Also, I am glad that you pointed out the limitations of these MS treatments. To listen to some of these youtube doctors talk about the B-cell depletion therapies in particular, you would think that they are some sort of benign near cure and not highly risky medications with serious side effects including PML with its high fatality rate.
I lost my first wife to MS . . . actually, it was her primitive treatment for MS that did for her. Back in 1984, when she was diagnosed, they could barely test for MS (MRI was in its infancy) let alone treat it. In the last few years it's been so painful to see the rapid progress being made, years after it could have done her any good.
Which treatment was she on, do you remember?
Thank you. I am a person with MS, and reading the posts gives me hope. Just knowing the are others out there, who had MS, at 27 and lived something of a life makes me swell up. I am so grateful to read these posts.. I ask for help: Is there an MS life guidance meeting out there? Cuz living with is MS is challenging and lonely. Love you guys and thank you for making a video like this.
Dude, I was JUST reading up on this last night! The timing of this is just 🤯
I've had 2 doctors and a nurse think I may have MS, mainly because of some blood tests, and they wanted an mri and xray, but that costed over $700+. We didn't have, still don't have, that kind of money on hand.
*A chiropractor I went to 10 years ago, while doing basic nerve reflex tests, when he got to my right elbow, my left leg kicked up. I'm sure he thought, "I'm sure glad I wasn't standing there!"
-Even longer ago than that, while having swim lessons, I could not make it past the halfway point in the pool, trying to swim across. My legs just stop working, and I couldn't feel them. I couldn't get 1 or sometimes both legs to move again for several seconds. Week after week, same result. So my doctor did few tests, started physical therapy, xray showed something on my lower spine but they weren't sure. Then my physical therapist just one day left and I wasn't able to go back.
In 2022, I began looking for a wheelchair because I could barely walk that summer.
Last year, my intestines began struggling to digest foods. I seemed to suddenly become sensitive to dairy, so began avoiding that. Strickly stuck to a low sodium, low fat diet. My blood pressure has been normal since. However the function of my intestines, isn't any better.
Now I've a genetic counsler to get testing done for ataxia, however MS is another thought.
X-rays are not usually a diagnostic tool for MS, nor are blood tests. The four parts of diagnosing MS are symptoms, mri, spinal tap and SEP.
Ataxia can be a symptom of MS or other neurological illnesses.
Sounds like a spinal cord issue, not necessarily autoimmune or genetic. Digestion and walking… Those can be caused by a local problem that doesn’t extend to your entire nervous system. The “something on your lower spine” is worth investigating further! These tests must cost a lot.
You should definitely try to get a diagnosis. Damage done by MS is not reversible. Doctors took too long to diagnose my boyfriend and he has irreversible brain damage, memory loss, worse balance, and other changes 😢
I am a long vakkine (c not k) patient; berberine and eye ver mec tin 🐴 paste has been useful for my condition.
Try to eat probiotic fermented foods and drinks but skip the pills they don't work. You may also need digestive enzymes with every meal to help you out
One of my friend's mom passed away years ago from MS. It was hard on him and his dad. She was wonderful person and I know she is truly missed. 😟
Yeah lost my daddy to it . And it was awful years of watching him suffer before that .
Thank you for sharing this video, SciShow. My dad was diagnosed with PPMS 23 years ago. It’s a debilitating disease, but he’s stubborn as heck, which is a trait that has helped him maintain his independence all these years. It’s great to hear about all the advances in MS research.
Not me being like "yeah and?" to the part about needing everyone to get the vaccine then remembering what we just got out of and how difficult it was to get anyone to vaccinate against that. 😅
Yeah it would be tough convincing everyone to get a vaccine for something very few people will get.
That was moreso political nonsense i think. Ooh, the government is controlling us, but my rights.
That kind of stuff.
Right??? I almost think some gene modifying therapies to not have myelin cells without the identical ends. It would be so much easier to just .05 percent of people to take medication and vaccines who are experiencing something than the 99.95 percent of crazies.
Indeed my worry too, Kerona affects most people badly, but look how many people convinced enough to take the vackzine.
Let alone trying to convince the whole population to take an EBV vacks, when only 0.04% of people will get MS. Most people wont care. So wont get it.
We have many vaccines for children that protects against debilitating illness. There isn't really a great option against viruses other than vaccines. Autoimmune diseases are very difficult to treat because you actually do need your immune system to work. People who don't get the vaccine but get MS will have to deal with that. The most important thing is making sure the vaccine doesn't hurt too many people who would've been fine if they didn't get the vaccine. Those are the ones for who the vaccine argument is the most difficult
46 year old MSer here. The recent ATA188 trial (which I was a part of) recently concluded in failure. It was an attempt to lower EBV antibodies.
I'm so sorry 😢
One of my best friend's in high school got diagnosed with MS. She had to move to another country to get treatment because it was so expensive here in the USA. I hope they find a cure. I haven't seen her in a decade 😢
Stellate Ganglion Blocks have been SCIENTIFICALLY PROVEN to “reduce or ELIMINATE symptoms of autoimmune diseases” by calming the overactive immune system and decreasing inflammation. And, lions mane mushroom supplement has been SCIENTIFICALLY PROVEN to regrow brain neurons x2. And, red led near infrared light therapy has been SCIENTIFICALLY PROVEN to HEAL NERVE DAMAGE, “REDUCE OR REVERSE DEGENERATIVE BRAIN DISEASES,” decrease inflammation, improve circulation, regrow veins, stimulate mitochondria synthesis, and more
My mom suffered from MS for about 20 years before passing away about a year ago due to failure to breathe. Since I was 10 I had to see her lose her ability to walk, then do things independently at all, and for the last 10 years she could barely talk or move at all. I really hope we'll one day see a world where no one has to go though this again.
I'm Canadian & was officially diagnosed in Oct. 2000 and was 22 at the time, but had symptoms for about 4yrs prior to diagnosis! My dr's didn't know what the cause of it was either, so this is both uplifting & disappointing for me to hear! I'm disappointed to know, that after more than 25yrs of my life with MS, that the chance for ME to be cured, is very low... but also uplifting to know, that there still is HOPE for others to beat this awful disease! THANK YOU FOR YOUR ATTENTION TO THIS ISSUE!!
I approach this by being in as many focus groups, volunteer studies and the like under the idea that while it may not ever dramatically help me, it could help an unimaginable number of people in the future (and good karma can’t hurt)
Stellate Ganglion Blocks have been SCIENTIFICALLY PROVEN to “reduce or ELIMINATE symptoms of autoimmune diseases” by calming the overactive immune system and decreasing inflammation. And, lions mane mushroom supplement has been SCIENTIFICALLY PROVEN to regrow brain neurons x2. And, red led near infrared light therapy has been SCIENTIFICALLY PROVEN to HEAL NERVE DAMAGE, “REDUCE OR REVERSE DEGENERATIVE BRAIN DISEASES,” decrease inflammation, improve circulation, regrow veins, stimulate mitochondria synthesis, and more
i have autoimmune alopaecia -total hair loss for past 25 years, & now learning about MS , epstien bar virus, shingles etc don't feel bad about my appearance to what people with these have to go through the nightmares.
Stellate Ganglion Blocks have been SCIENTIFICALLY PROVEN to “reduce or ELIMINATE symptoms of autoimmune diseases” by calming the overactive immune system and decreasing inflammation. And, lions mane mushroom supplement has been SCIENTIFICALLY PROVEN to regrow brain neurons x2. And, red led near infrared light therapy has been SCIENTIFICALLY PROVEN to GROW HAIR FAST by increasing blood flow, increasing oxygen, decreasing inflammation an bringing hair back into the growth phase.
If you're not allowed to feel bad for having alopecia is someone with MS allowed to feel bad for having MS when there's so much worse things out there? Is only 1 person allowed to feel bad because they have it the absolute worst? ❤ Don't be too harsh on yourself ❤it's good to realize your blessings for sure but don't undermine your struggles either
@user-up1id5rv2mYou know you could get both, right? Alopecia often comes as a warning that you’ll develop more autoimmune diseases.
Strange note to end on, when SciShow did an episode just 2 months ago suggesting that an inverse vaccine, one that makes the immune system FORGET its overactive response causing MS, was currently in phase 1 testing. If that works out, the whole "Will we ever cure this?" questions promises to get a lot simpler than the way it's discussed here.
th-cam.com/video/uXZhnJfYojk/w-d-xo.html
Agreed! The inverse vaccines are also one to remember.
That's my big hope. But even if the trials are successful - drug development and approval takes forever. I basically needed it years ago.
@@Lugmillord the cool thing about those inverse vaccines is that, iirc, they potentially also reverse the effects of that overactiveness. If not, then even then it's just a matter of finding some way to restore the myelin sheath.
Interesting
Thank you for talking about MS. My best friend was diagnosed 8 years ago and I have been following the research news ever since
You are a very good friend❤
My sister has or had MS, she just went through the treatment that wipes out your T cells so the regenerate without the ability to destroy the myelin. After a year she has no sign of MS❤️🙏
The biggest issue with this treatment is the cost $$$
Stellate Ganglion Blocks have been SCIENTIFICALLY PROVEN to “reduce or ELIMINATE symptoms of autoimmune diseases” by calming the overactive immune system and decreasing inflammation. And, lions mane mushroom supplement has been SCIENTIFICALLY PROVEN to regrow brain neurons x2. And, red led near infrared light therapy has been SCIENTIFICALLY PROVEN to HEAL NERVE DAMAGE, “REDUCE OR REVERSE DEGENERATIVE BRAIN DISEASES,” decrease inflammation, improve circulation, regrow veins, stimulate mitochondria synthesis, and more
Where did she have the treatment and what is her MRI like now?
What's the name of this treatment?
Was that stem cells?
It was not stem cells, the treatment was done in Oklahoma It was done twice one year apart.
I was diagnosed with MS last September. As a 28 year old it was very scary and something I think about daily. As a scientist I am so thankful for hard work of thousands of bright minds that have brought us to this point. Thank you for making this video @scishow
As someone with MS, I'm really glad that I live in a part of the world with free healthcare. If I was living in the US, I'd be paying $10 a day for the medication I'm on.
Same here, I've had RRMS for 20yrs now and have been getting treatment for 19yrs via the public health system in my country, I also get annual MRIs. I've been on Interferon beta-1a, tecfidera (wouldn't recommend), and currently on tysabri which has held me stable for over 6yrs, all without having to open my wallet.
Hate to break it to ya but you would be paying a sht load more than $10 a day for it here
Stellate Ganglion Blocks have been SCIENTIFICALLY PROVEN to “reduce or ELIMINATE symptoms of autoimmune diseases” by calming the overactive immune system and decreasing inflammation. And, lions mane mushroom supplement has been SCIENTIFICALLY PROVEN to regrow brain neurons x2. And, red led near infrared light therapy has been SCIENTIFICALLY PROVEN to HEAL NERVE DAMAGE, “REDUCE OR REVERSE DEGENERATIVE BRAIN DISEASES,” decrease inflammation, improve circulation, regrow veins, stimulate mitochondria synthesis, and more
@@k00ijmaybe you shouldn't have voted for that guy who helped start all those wars that left us tens of trillions of dollars in debt and is currently funneling billions to the country where his son got a cushy job without speaking the language or having any relevant expertise
It would be at least $50/day for the older injectable I was taking.
My grandfather had it, I remember a time when he stand up for a bit with a frame and lived at home, but as time went on he needed progressively more and more care, until he could only come home once a week and that really had a toll on my grandmother as well. Eventually he had to be spoonfed every mouth. There's no overstating what a horrible disease it is. I still the wooden dragon, bus and robot toys he handmade when I was little, when he could still use his hands
Diagnosed in 2007, but still going strong (thus far). Certainly the fatigue, pain, and weird spasms are a thing. And heat sensitivity. And a bunch of other stuff--but no walking assist yet. The hardest thing is it doesn't show at all on the surface. If I don't tell people, they don't know--just think I'm lazy or pathetic. There are just couch-recovery days that need to happen. I quit my last job because the demands were reasonable to them, but impossible to me--though frankly, I think 12 hour days on one's feet with no breaks is nuts.
In my mid 20s, male and my first relapse 2 years ago now left me permanently blind in my left eye. Within 2 days my vision in that eye went quite rapidly to black. I can now only vaguely make out shapes with this eye, even after a dose of steroids for 3 days. Horrific disease - on medication now but it feels bizarre that I have this disease that can destroy my life at any moment, any day, any hour - the sword of Damocles hanging over at all times. Will I lose my voice next? My vision completely? My ability to walk?
My first MS symptoms appeared when I was 29 years old. I was fortunate enough to have two children already. Now this year I am turning 43 I've always had the progressive version of the disease so I went from walking in about 2 years to walking with a cane for about 2 years to walking with a walker for about 2 years and been in a wheelchair ever since. Now I'm in a motorized wheelchair. I'm very happy that this research was conducted on such a large scale. However, my blood test results have shown me negative as having EBV. This disease is very tricky to understand the origins of. It seems like the perfect storm of a bunch of different factors that eventually lead to this disease. I'm not too sure if I will see a cure in my lifetime. The only thing I will say is that everyone should have access to health care because when you need it most you appreciate it,
Stellate Ganglion Blocks have been SCIENTIFICALLY PROVEN to “reduce or ELIMINATE symptoms of autoimmune diseases” by calming the overactive immune system and decreasing inflammation. And, lions mane mushroom supplement has been SCIENTIFICALLY PROVEN to regrow brain neurons x2. And, red led near infrared light therapy has been SCIENTIFICALLY PROVEN to HEAL NERVE DAMAGE, “REDUCE OR REVERSE DEGENERATIVE BRAIN DISEASES,” decrease inflammation, improve circulation, regrow veins, stimulate mitochondria synthesis, and more
I've had a very angry form of MS for 16 years and a stem cell transplant halted the disease 100%, but unfortunately the pre-existing damage was here to stay. After relentlessly investigating, it was discovered I had faulty veins in my pelvic region called pelvic congestion syndrome, which pressurized my entire spinal venous system, causing every MS symptom known. After a same day simple bilateral venous embolism, several of my symptoms went away. I can now turn my head, walk outside without sunglasses, tinnitus is gone, I can walk heel to toe, etc. I'm waiting for my 2-year mark before I make a video to share with others. Because MS is unpredictable and the placebo effect sometimes happens, I want to be sure before I share all of the details. 🧡 Stay tuned and keep faith for a cure!
i may have ms (i have an autoimmune disease for sure, and severe neuropathy that is worsening over time with my autoimmune responses), but ive never had mono (to my knowledge). even if i dont have ms, its study and curing is EXTREMELY important to the realm of autoimmunity. i sincerely hope we get ms cured. itll be a big first step in curing a ton of other autoimmune diseases.
There are other conditions with similar symptoms, it is important to get a neurologist to determine the cause.
I have MOGAD, which can seem similar to MS but is different.
I'm going through the process of being diagnosed with m.s at the moment, it's taken years and this video has made me feel so much better ❤
Any thoughts on Vitamin D having an influence on MS? It does play a huge part in how the immune system works. I've read that many people suffering from MS are deficient in Vitamin D.
I'm part of a study (called ReVIVE) through University of California in San Francisco that is testing the effectiveness of clemestine fumarate in re-myelinating damaged neurons. I've been participating in various MS studies through them since my diagnosis in 2020. I feel privileged to be contributing to such important research that could change the lives of millions
My dad best friends wife had MS she progressively got worse. She was the sweetest soul ever… it was so sad to see her get to the point where she could only move her eyes and her neck like 5-10°. She lived a wonderful life though 🧡 rest in peace to all of those who lost the battle to this horrible disease.
One of my less close friends (we're part of a group who runs workshops together every few months) relatively recently found out she had MS, as in within the last year or two. I was surprised but in a good way to hear that it's not such a big deal these days as she can get a shot every month or something like that that basically keeps the symptoms at bay, although it also clamps down on the immune system. I hope for her sake and for the sake of everyone else affected that a cure can be found, but also am happy to hear that treatments are getting better over the years!
If she's relatively mild, got early diagnosis and has access to care, the prognosis seems pretty good these days. A good friend of mine got it after a horrible car accident at 18 (maybe some kind of link?) and was in a state where his hands no longer functioned and he was nearly bed bound. Fast forward 16 years and the guy just finished renovating a house! I'm a Long Covid case and that guy, and my best friends wife both have MS and they're way more capable than I am. MS, while not curable has so many treatment options these days. Best wishes to her! I'm sure she'll have a full life.
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Oh i have ms. I was diagnosed at like 22, been on various med for the last 6 years. I definitely think that strong treatment from the start and the prayers of my family has lead to me having pretty much no symptoms outside of my existing lesions and my inital bout of optic neuritis.
Also on the last drug tho it's funny seeing it as a pill since it's an infusion
EBV is just one trigger for MS, there are other environmental factors such as bacterial infection that trigger the same
Getting spikes on myelins could trigger an autoimmune response that does not end well.
Same with ME/CFS triggered by ebv, flu, enterovirus, long covid, chronic Lyme. The causes seems related especially ebv.
Content creators are quick to release information to sensationalize it. In order to fully understand the spectrum of information available, it would require a lot more than sitting at a computer for a weekend googling "MS".
Im interested in learning more about Lupus too. My ex had it and i honestly kinda struggled to understand it, i was always sympathetic but sometimes confused about what put them over the line for the day. Thanks for this vid too
Same, mine is MOGAD, which is similar in symptoms to MS, but the immune system targets the oligodendrocyte cells which repair the sheath.
Treatment and symptoms are similar, though blindness is more common. I'm not sure about the cause though, never had mono so maybe a different virus?
It's also more rare, which makes getting any kind of support hard, like there is less than 2000 cases in the US rare.
my mother has late stages MS it's a horrible disease, she is suffering all the time, this video brought me to tears
Makes me so proud to work in this industry, in a country where access to healthcare is possible for everyone/paid for by society 😮
I've been using LDN (low dose naltrexone) to mitigate EBV activity for years. I was right all along
Lisine supplementation helps against EBV too.
I was diagnosed with MS at 22, my treatment has been natalizumab injections every 4 weeks which certainly help but the pain and numbness around my knees don't go away. Fortunately, dizziness hasn't come back since the first attack and headaches are also rare.
Stellate Ganglion Blocks have been SCIENTIFICALLY PROVEN to “reduce or ELIMINATE symptoms of autoimmune diseases” by calming the overactive immune system and decreasing inflammation. And, lions mane mushroom supplement has been SCIENTIFICALLY PROVEN to regrow brain neurons x2. And, red led near infrared light therapy has been SCIENTIFICALLY PROVEN to HEAL NERVE DAMAGE, “REDUCE OR REVERSE DEGENERATIVE BRAIN DISEASES,” decrease inflammation, improve circulation, regrow veins, stimulate mitochondria synthesis, and more
I was wondering why if nearly everyone gets EBV why MS is concentrated in the UK in the far north, and Orkney and Shetland isles - I was told there was an established link to a lack of vitamin D in sunlight due to the shorter days in winter. But that wasnt mentioned, and it must mean that its not “just” EBV, at least not in the UK.
Vitamin D is important for immune response in any case, so that link seems quite likely.
My Aunt Gail had this disease, rest in peace. I was too little to understand so I'm trying to forgive myself but I was scared of her, scared of talking to her. She made me so uncomfortable as a kid and it's a regret I will have to live with. I hope she didn't suffer too much, and that we can find a cure
24 year old here that was diagnosed just under a year ago… still adjusting and navigating this major shift in my life. While this gives me hope- the fear of money playing a role in accessing such a thing- makes this sound like a fantasy.
I live in an area where MS is sadly normal along with ALS and type 1 diabetes ( Sardinia ). We have one the highest concentrations in the world due to limited genetic pool and isolation. It's scary to think about it.
Uplifting to hear there's been even more progress on a cure for MS. In my 20's a close friend passed from MS-related complications. His boyfriend took his own life several days later. I will never forget him. I wish we had a cure then.
I was diagnosed in January of 2024. I was put on Briumvi shortly after my diagnosis and I haven’t had a relapse since. One thing that always hung around was my vision was sometimes blurry. I went out on a limb and tried a grounding pillowcase to sleep on. I swear to god that thing works because ever since I started using it my vision has been 100% throughout the day.
Well done and timely.
This is kinda heartbreaking.
One of my brothers best friends from high school passed away just a couple years ago from MS related complications.
Its great we're getting closer to curing it. But kind of heartbreaking for my brother's friend's family and friends.
Around 1980 there was a wheelchair bound teenager who said she had MS. She told me about trouble doctors had acknowledging it, but she had hope it would improve because they were just then finding lab based markers as evidence.
I thought of her often. When I was athletic workaholic and got so sick and doctors said it was all in my head, that old conversation helped me keep hope that it woukd be acknowledged conditions.
My grandma died of MS at the age of 44. It’s the loss that’s affected me the most in life
It seems weird that MS is rare when I know at least 3 people with it right now and know of several more.
Do you have it? I do and I always had the same feeling, but it may just be the Bader-Meinhof phenomenon, a frequency illusion caused by cognitive bias.
Genetics has a lot to do with it. People of Northern European descent tend to get it more. So you may live in a community with the right gene pool.
I can think of 2 people I have known that had MS. A person I worked with in high school, and my husband's grandfather (though he died before I met my husband).
I could have met more because I only knew that the coworker had it because he called in sick during a flare-up, and it was mentioned.
I have MS, as do my mam, my sister, and my aunt 😅
I have it and know 2 other people who have it. My uncle and my ex-girlfriend.
I got MS-like symptoms after covid, even visible lesions on the MRI - it was caused by a really severe vitamin B12 deficiency. Got it fixed up, supplemented cofactors and I'm mostly recovered right now. For some reason, my ferritin, B12 and vitamin D levels were in the gutter after having COVID. If someone here is struggling with neuropathy, neurological symptoms, ME/CFS etc - get your blood tested.
This all makes so much sense and has implications for conditions like AIDP/CIDP which can be triggered by viral infections and even vaccinations, as well as for conditions like ME where every single patient I've come across with this condition have positive EBV serology and they generally all have some kind of episode in their lives where they had prolonged probable viral illness. I'm quite convinced all these conditions that cause some kind of CNS inflammation are linked. However it seems there must be some genetic vulnerability and in the case of ME psychosocial overlay that then triggers the onset of these illnesses. For example, MS occurs in much lower rates in non-caucasian populations. The highest rates are in those with ancestry from northern Europe.
My aunt got ms when she was 27. She was on the forefront of all sorts of experimental drugs and treatments. She is one of the reasons prednisone exists. She passed away several years ago, but her little brother, my uncle, was diagnosed with Ms at age 68, he's 77 now.
Currently having my second attack and it's absolutely the worst pain I have ever felt. I'm in week 17 of the worst pain of my life and would litterally cut my leg off for a cure.
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what kind of pain?
Not too long ago, I met someone with MS for the first time. They're a young, beautiful, wonderful person with humour, brains and charm in spades. I think about them often; about how they have no feeling or motor function in their hands at all (they're even very cold most of the time as a result of poor blood flow through tissue that doesn't get to move very much); about how their disease developed rapidly at first but has dramatically slowed down since their life took a turn for the better in many other aspects; about what the future might hold for them.
This video brings me some hope that perhaps, someday - and perhaps even someday soon - we might see the last of this terrible illness. That said, it is a little disheartening that, while we have ways of slowing things down, there is still little to no indication we might reverse the damage already dealt. I hope that, as medical science and molecular biology develop ever further, that may at some point be a thing of the past, too.
Most cases worldwide are in North America, yes, where the water has been inundated with fluoride for years. MS sufferers are advised to avoid Floride at all costs. Hmmmmmm
North America, where most of the population has been raised on overly-processed, chemical-filled food, and thinks this is totally fine.
I was diagnosed with MS at age 42 but started showing signs when I was 26. The meds are really expensive, a cure would be a financial relief.
The focus should be on re-mylenating the nerves.
The work of George Jelinek and the overcoming MS program including diet, exercise and mindfulness can't be overlooked. A 60 year evidence based study targeting saturated fats as a trigger for the autoimmune response is incredibly successful in not only suppressing the condition but also significant recovery for participants. mainstream pharma based medicine is not in favour of this study for commercial reasons but the majority of MS nurses I have met are incredibly positive about its benefits
they make more money treating people than curing them.
If you were clever you could get in on that.
Pity.
@@tomarmadiyer2698 i'm intelligent, thanks, but i also have morals. using sick people for monetary gain is against my beliefs
Only in the US, but luckily other countries are also doing research and have no incentive to come up with a long term treatment rather than cure, as the governments pay for the treatment.
My father was diagnosed at 43 and eventually passed away at 56 of PML, a rare disease he got from his infusion treatments to slow his progressive MS. Hopefully there is a true cure one day for those and for their families suffering
Could something like an MS-Rhogam be effective?
Rhogam is an injection of anti-D antibodies given to pregnant women that prevents them from developing their own antibodies that attack the fetus.
In this hypothetical, we create an MS injection of EBV antibodies, so the body does not produce it’s own antibodies that attack the myelin sheath.
I’ve never seen this idea brought up before, and I hope there’s someone out there that can tell me if this idea is feasible or not.
I have had MS for 20 years. And im only 33.
When i was diagnosed, there were 4 drugs for it.
Now there are over 12
Stellate Ganglion Blocks have been SCIENTIFICALLY PROVEN to “reduce or ELIMINATE symptoms of autoimmune diseases” by calming the overactive immune system and decreasing inflammation. And, lions mane mushroom supplement has been SCIENTIFICALLY PROVEN to regrow brain neurons x2. And, red led near infrared light therapy has been SCIENTIFICALLY PROVEN to HEAL NERVE DAMAGE, “REDUCE OR REVERSE DEGENERATIVE BRAIN DISEASES,” decrease inflammation, improve circulation, regrow veins, stimulate mitochondria synthesis, and more