Leaving this message in 2024, just so you know this video is still helping a lot of people. I haven't been given an official diagnosis but even before I saw this video, my neurologist is already mentioning the possibility of MS. And while I'm waiting to hear back on my Lumbar Puncture (spinal tap) results and what it reveals, I've been reading and checking videos like yours. And more and more, the symptoms are really lining up for MS. In many ways it would be a relief to finally have a diagnosis, since I've been going through non-stop hell for the last 4 years. So again, thank you for this. Hope things are going well for you now.
As a couple of others have mentioned, this is also an indication of B12 deficiency. It mimics MS because B12 is required to keep the protective sheath around the nerves healthy. Without it, it disintegrates and the damage begins. I experienced all of these symptoms, along with a ton of others. I could barely walk, fell constantly, was developing dementia symptoms, couldn't physically speak at times, severe vertigo, on and on. They thought I had MS, but when the scan was clean they didn't know what to do. Months later, when I literally felt like I was weeks from death, one doctor realized they'd missed doing a few blood tests. Severe B12 deficiency. With treatment, I had some improvement, but was left with permanent nerve damage. While off work trying to recover, I developed a severe neuroimmune disease and have been almost completely disabled since. Fast forward 14 years, I've been experiencing new symptoms so I just had more MRIs done. I've got damage and lesions on my brain stem. Since so many months passed between the initial MRI and discovering the B12 deficiency, and because there was no second MRI done, I don't know if it's damage from the deficiency or if I've developed MS now, too. Waiting for further testing to determine the answer. Long story short, B12 deficiency is extremely serious. It does the exact same damage as MS, and people are sometimes mistakenly diagnosed with MS when it's actually a deficiency that can easily be treated. For some reason, a lot of doctors neglect to test for B12. I was shocked when I was told this was what was initially making me so incredibly ill, but I've since learned a lot about it. The past 14 years have been medical chaos for me. This young lady is very right.... don't rely on doctors to automatically know the answer. You know your body. If something doesn't feel right, don't stop until you find a doctor who will help you.
I have chronic amemia but I have some ms symptoms which I’m freaking out about I’m having my monthly blood test tomorrow so I’m going to ask how low my b12 is if it’s not that low I’m going to get tested for ms
Do you have pernicious anemia? Because your story is exactly spot on like my mother's and she has pernicious anemia. I had to double check your username!
My blood tests have shown B12, iron and D3 deficiency. I've been taking the supplements for 2 months but my improvement has hit a wall and I've been getting symptoms that might be MS hug and Lhermitte's so I had a full spinal MRI, which showed a hotspot on my neck. Now I need a contrast brain/cervical spine MRI. So nervous.
Your video encouraged me to go to the doctor and push for an MRI. No one thought I had MS. But I do. This was at the end of May. I’ve seen an amazing neurologist and am doing the paperwork and bloodwork etc to prepare for my first MS therapy - Ocrevus. Thank you so much for sharing. You literally are saving lives and getting people to seek out answers. ❤️
I’m so happy you advocated for yourself. I worked with a dr in Texas who blamed all my symptoms on Chronic EBV. Now I live in Oregon and I just did blood work and will go over it with the Dr. then we will schedule an MRI.
I think I might have ms, all the different symptoms I have, in the last 8 to 10 yrs in my mind point to it. I keep asking my Dr if all the individual symptoms I have could possibly all add up to 1 main illness but they treat 1 complaint each time, ignore the rest. But blinding headaches, numbness, tingling, eye pain, twitching, vertigo are getting worse and they won't listen. At this stage I think my own family think I'm exaggerating. With covid, it's getting impossible to be sent for tests, but I'm going to ask to be sent for mri. I'm even having panic attacks now, I'm just so fed up. It's great having videos like this, make you aware of what to look out for. Thank you
Just had my follow up from my MRI 2 lesions on my brain. Spinal cord is clear. Going through all the extra blood work to check for infections that mimic MS & getting a referral to the MS neurologist. So it begins…
@@kristabrown2675 I’m glad you got some answers. Yes, get other things checked and out of the way. Mine was caught relatively early. No idea exactly how many lesions on my brain but only one that was active. I’m scheduled for spine and thoracic MRIs in the spring. 🤞🏻
OMG. This is the he best quote I have ever read. You need to put that quote on a coffee cup. It's beyond true and you worded it perfectly. Lol. Thank you, I never knew how to explain it. (That's what's been happening with me lately). :)
Cheers to you for keeping on those doctors!! My father was diagnosed when he was 45. He is now 89 and was able to stay out of a wheelchair until he was 80. He followed a special diet (fish, chicken, low fat, and took cod liver oil supplements). He has lived a very healthy life until his age caught up with him in the last few years. I sure know what you mean about doctors not listening though! I had slipped discs in my neck--suffered with tingling in my finger tips for 6 years and thought I had MS. My Chiropractor figured it out. I had the surgery to repair the slipped discs and got the feeling back in my left hand and most of my right hand. Life is unpredictable! Good luck and thanks for the great video!
Hello I am not diagnosed of MS by any doctor. My symptoms though points MS. Age 24, buzzing sensation in feet, internal tremor from hip to sole, blurred vision (for seconds) in right eye, itching all over body. I feel like i walk on bubble wrap, may be because of neuropathy. I read about your father being fighting quite impressively with MS. This made my anxiety disappear, you got to believe me on this 😅. Still i have a question, how is your father's vision? Is it still alright?
@@adivarma95 My dad experience blindness on one eye on occasion, but his vision was very good up til the end. Sadly, we lost him on August 12, 2020 at the age of 89. My sister and I went to see him one last time and he died within minutes of us seeing him. He is dancing in heaven! He was able to walk until about 10 years ago. My mom's brother also had MS and died at age 86. He walked up til the end!
@@andreameeuwsen6060 i am so sorry to hear that. May his soul rest in peace. Never met him but he still inspires me and other people who will read your comment! Thanks for the reply, really appreciated!
@@andreameeuwsen6060he was waiting for you guys, I know it! The same happened with my grandma and when my mom came home from having to go out somewhere, when she heard her voice and mine, she left us. But honestly in my opinion it couldn’t have been more perfect timing. If my mom wasn’t there with her at her time of passing I would’ve felt so entirely guilty. ❤️🩹
The comment section feels like such a support group❤️... Thank you for creating the platform for us to share our experiences. God be with us through this
Selma Blair. The famous actress went through the same exact thing. She had MS for years and no doctor would do a thing until she physically fell in front of her doctor because she couldn’t stand. Then she was diagnosed. Watch her story if you are interested. It sort of frightened me as I suffer from health anxiety so I try my best to stay away from these types of videos but it shocks me how doctors cannot connect these dots.
I think they do connect the dots, but because of their greed they wait until they are like 92% sure that the symptoms indicate a certain illness before they do any diagnostic testing/imaging, in an effort to reduce wear & tear of resources & equipment. They even train us to do this in the healthcare field (fraud waste and abuse training). It’s the reason people on Medicaid & Medicare have to wait constantly on approval by insurance b/c of too much wear & tear & waste of materials in the past for patients who’s symptoms were mild. Which is BS because they misdiagnosed people & dismiss ppl constantly all in an effort to protect “the equipment” that could easily be replaced but someone prefers to pocket funds used for that
Selma, it would be frightening. Did you have any sort of chronic itch next to your spinal column? I have and before I knew it the info went right into MS. WHAT????? I need to see a Neurologist I guess, what do you think? Thanks Janice
What really annoys me is when i describe to friends and family what i have going on like muscle twitches or whatever they say they have that "occasionally" too. I tell them the difference is i have it all the time! People need to stop minimizing other people's symptoms. Sometimes doctors do that as well. We know our bodies when something isn't right.
My sister has had so so many investigations for her autoimmune stuff and it’s debilitating. Every symptom she has, they put it down to mental health or chronic fatigue syndrome. She’s even spent £300 on a private appointment with a neuro. He referred her for bloods, MRI spine and MRI of the brain. Sadly no more information was found although MS was ruled out because there were no brain or spinal lesions. She’s 31 and doesn’t leave the house much due to pain and mobility issues despite being very slim. I’m so happy you managed to get diagnosed and get treatment that’s working for you ❤
I'm trying to figure out what's wrong with me now and MS has come up a few times. It's scary but I'm glad I found your video. It was really informative for someone like me trying to find some answers!
Same! Antidepressants are the only things that let me sleep 😂 low dose amitriptyline (endep) and sertraline (zoloft). Highly recommend if you can get them.
I wish I had had this info 15 years ago when I was first diagnosed. I have had soany of these symptoms and Dr's always dismissed them because they go away after awhile.
Thanks so much for your video and explanation. I may have the start of MS after a brain MRI showed lesions. It’s a sneaky disease and I love the way you filled in the lines between the dots. Your positivity and bubbly personality have filled me with the confidence to persevere with the specialist! Thanks again 🙏
I have Hyper Ehlers Danlos Syndrome.... symptoms are very similar to MS. ( it can sometimes be diagnosed before an MS diagnosis ) If youre Doctor is saying you dont have MS but you know theres something wrong .... ask them to look into EDS ( Ehlers Danlos Syndrome). Best of luck , love and light to you all .
So true. I am not diagnosed yet and have hypermobility but also have TONS of MS neurologic symptoms and signs. We have both EDS and MS in my mom's side of family so I am still trying to get an accurate diagnosis.
I'm really scared that this may be the path that I am headed down. I already have a bunch of health issues and have noticed over the last few years of things progressing this way. I applaud your strength in sharing your story with such grace.
I have secondary progressive M.S and the twanging of the body feels like a pull back /let go catapultation of all my muscles and nerves so your guitar string description is another cool way of describing it, bless ya! ...❤️
On and off, I’ve been dizzy, lately terrible balance that can’t just be weak hip flexors and ankles, blurry vision, over my lifetime, autonomic nervous system changes, migraines, more blurry vision, odd peopioception and tripping often. Sometimes even breathing issues that aren’t asthma. Twitches in feet. And in general, sleeping issues, persistent urination and extreme lethargy. Either depression or something else, but ADd meds and coffee don’t even help anymore…. I totally get the pins and needles, but only after sitting. I’ll stop because it could be a lot of things and yet definitely sounds like remitting relapsing. I just pray that they find a cure for this thing 🙏
I was diagnosed 3/2021…. I didn’t take it serious because I was hit by a car at age 8…. Never told anyone because I was afraid of hospitals, my mom etc. So Now at age 47 Things at getting worse at a rapid pace… I always had pain while standing for a long period of time… I thought it was due to the accident…. I was walking fine in January or before then I was on a cane for months, now I’m on a walker….. Still haven’t received my first dose of medication for PPMS…. I’ve had every vaccine known to men COVID, booster, TB, Shingles etc. I can’t remember them ALL…. Pray for me that everything gets better…. I was a School bus driver for 20 years off and on and the doctor stopped me from driving because she said it was too dangerous….
I’m catching this one year later- I too had a long hard discovery journey. I fired 2 neurologist for pure stupidity- shame on them for not referring you to the MS Society for better up-to-date info. Bravo for sharing- my MS is now 21 years since diagnosis. After one year of Drs. and prescription drugs I found an alternative healing with raw foods, exercise and acupuncture- do your own research and find a support group as every MS case is personal. ♥️
Just found your page and I was just recently diagnosed with ms this year and had a 3 month flare up I’m really glad to see that it looks like your living a good life ❤️I’m scared to see where life with ms is going to take me but I’m going to document it on my channel !
I was diagnosed in the last year mind started with ocular neuritis so I started to lose vision in my left eye but thankfully I got steroids in time and my eyes back to normal. I find being open honest with everyone even complete strangers 🤣is a good way to keep you mentally strong and make it more normal to you
My mom has MS, a terrible case too. She’s been bedridden for ten years and she’s only 50. I’m 20 and I’m currently experiencing lots of pain in limbs, burning, and slight tingling in my scalp and legs. I’m terrified but seeing how strong my mother was keeps me balanced. I’m going to my doctor soon so I really hope for the best.
You and your mother might have a low B12 tissue level. A normal B12 blood test is no good, you need a methylmalonic acid test, which will show you the tissue level. My brother was misdiagnosed and suffered for years, when the whole time he had a low B12 at the tissue level. When it gets low, the methylmalonic acid is elevated and over time it eats the myelin sheaths from the nerves. Good luck
@@Okie343 i had that test done n its normal I have lesions done on my brain n spine after a mri This was after 20 yrs n more of symptoms ,fatigue, headaches, vertigo n double vision in 2010 Docs could not find anything wrong Why ? I don't know ....although lesions where there.... But in 2018 i had a mri done n the prof of neurology found lesions on brain n spine n diagnosised me with ms
MS is caused by parasites - read Dr Hulda Clark’s book - The Cure For All Diseases … changed my life after being told I’d be in a wheelchair at 32! Western Dr’s ignore the fact that parasites are the main cause for disease in the body, MS, Parkinson’s, ME, Cancers, Alzheimer’s … I healed myself and all my debilitating symptoms went away … double vision, extreme leg and arm pains and muscle spasms, brain fog and fatigue, memory loss, difficulty talking, walking etc …. all went away once I dealt with the leaky gut, Candida and parasite overload
As a medical student, some of the GPs I’ve shadowed are beyond awful, like I don’t even think they should be practising. Some of them literally forget like 50% of the clinical knowledge that they learn in med school and just remember the surface level things needed for day-to-day general practice like UTIs, skin conditions, contraceptives etc.
Holy sh*t, the guitar strum is exactly how I describe it. I don't see it as an "electrical shock" as it's come up in other resources. Really interesting video, thank you for sharing
Did you had a headache before everything starts. I am really depressed I was always healthy. 4 months ago everything started with headache, now I feel my legs super heavy and my head feels super tired everyday. And doctors can’t help me 😩.
I'm currently in the process of diagnosis and I'm pretty certain I have ms. I'm 29 with a 4 and almost 3 year old. I definitely relate to a lot of things. Thanks so much for sharing your experience. I'm lucky my Dr has referred me and hopefully I'll see them in the next 2-4 months
I also suffer serious fatigue and have bad “brain fog”. Sad that MS have such a HUGE effect on memory and cognitive ability but I am SOOOO grateful for all the different meds that are now available and that they get more affordable every couple of years.
Thanks, Rhian - your MS journey sounds a little like mine - not exactly the same symptoms, but the isolated onset of “unrelated” symptoms which in hindsight can be connected by joining the MS dots is EXACTLY what I went through. Thank you for sharing your journey - I am sure it will provide others (both diagnosed and undiagnosed) with some peace of mind. Well done.
I had all the symptoms she mentioned and I suffer with pain up to a point of a sudden paralysis. It goes and off without any reason/notice for 10 years. Been to different doctors but to no avail. But after we moved to India, an Indian doctor first check my Vitamin D level. True enough I am deficient of Vit D. She put me on 60k IU/week for 3 months and I carry on with a lower dosage up to this time. Im regularly checking my Vit D level every 6 months. Now, I’m as normal as any woman my age of 54. God is good for posting us in India and found a great doctor.
How do we know if we get MS symptom or B12 deficiency? I got this symptom last week, then i ate Neurobiun forte (vit B1, B6 and B11) and then feel better but stil there is pain in my leg
Always check with blood work at the doctors. B12 was the first thing my doctor checked with my symptoms and my levels were fine. Never assume. Just advocate for answers.
From Canada here. Sorry about your delay in diagnosis. Yes, MS is elusive, but your symptoms combines with your young age, should have set off alarm bells with the doctor, they are so classic. Glad you know and have treatment.
I have bad health anxiety and avoid doctors at all costs... I have a history of diagnosing myself with illnesses and I'm currently convinced I have MS but it could just be the health anxiety...
I’m 66 and had symptoms on and off since I was around 30. No answers always blame it on something else or they try and google! Two episodes lasting 30 mins each time where I couldn’t put a sentence together led me to an MRI. Lesions demyelination indicate maybe MS with a follow up recommended in 6 months. My GP says he doubts that I would have MS.
I pretty much had the same symptoms plus a couple more. Doctors are a joke. So I cleaned up my diet. Got rid of processed foods and sugar and I’m never looking back. I feel so much better. My symptoms have gone away. Try cleaning up your diet first.
I went to the doctor last month on a Tuesday with numbness in my hands, feet and stomach (first numbness flareup ever), and by the Friday of that week, i was diagnosed with MS. makes sense that the process was so smooth where i live in Tasmania. world leaders in MS research down here.
Wow! That was quick. I've been trying to get I'd of "MS"diagnosis for 10 years. I'm in this category, but they are missing something. I have ataxia- severe resting and it is not MS related. I have achalasia, an auto immune disease not related to MS. But in this"box", it's hard to get a doctor to listen. Need to come to your side if the world for better docs
Thats good to hear im in Melbourne and had eye pain that was really annoying after a multitude of ophthalmology tests which I did fine in they said optic disc looks slightly funny but im ok, I obviously looked stress so they said MRI as a precaution. Sure enough optic nerve was inflamed I asked if there were lesions she said yes 50-50 you will get MS and referred me to a neuro and im still waiting 7 months later to see them. Im still hoping it was B12 deficiency (vegan) but every twitch or pain i have extreme anxiety i don't know when ill get any information.
Thanks for this. I am 61 years old and have been having symptoms since a bout of measles when I was 25. Only one doctor joined the dots and sent me for an MRI when I was 53. Unfortunately I had a major panic attack and the MRI didn’t happen. Then I had to move due to domestic abuse. Now all these years later I am still battling to get a doctor to take my concerns seriously. In December 2021 I had an episode where my right leg decided not to walk anymore and I was hospitalised. An MRI on the spine showed nothing contributing to that problem. I went to see my doctor who has referred me to a neurologist as I told him I was worried it could be MS. However it’s nearly May and still no appointment. But your video has spurred me on to make a detailed list of symptoms. Thanks for the inspiration xx
I’ve just watched this. I’m at the point of waiting for mri for suspected brain tumour or ms. I had a diagnosis of fibromyalgia about 7/8 years ago and have been on medication to control it but new things are appearing and they are not associated with fibro. Especially the problems walking, like walking through waist deep water or treacle. So much effort. Other things I’d put down to peri-menopause but I’m questioning it all now. Was helpful to hear your experience. X
Such an open and honest account of your MS journey. Well done for sharing Rhian. Sometimes, just being able to put a name to something helps reduce the stress of not knowing. xx
Lisa Dixon Thanks Lisa ❤️ that’s exactly it, it felt like a relief when I was diagnosed. I know you’ve had your own health struggles so thank you so much for your comment - it means a lot ❤️ Hope you and bubs are doing well xx
Me …Ms since 2002 …. My sister died from uro-sepsis due to ms .the heat or any temperature change kills me the burning skin and itch u can’t scratch and fatigue . I had covid and now long covid. She describes things beautifully
A lovely and great video about MS, thanks for sharing. One important tip: make sure, that You and Your kids are receiving plenty of vitamin D3. Plenty means sever thousand I.U. each single day. My first MS symptom popped up in August 1997, followed by just a few small symptoms later. Finally a big relapse in January 2004 lead to a MS diagnosis. I can still walk and talk, even though according to my MRI that is highly unlikely :-) Have been taking 2x 5000 IU of vitamin D3 since 2004, D3 level in my blood is (just) 75. Everybody should have this value over 50, while MS patients should aim for a value around 80.
@@laraibkhan8386 Yes, it does. Also lack of VitD during the first 15 years of life is pretty much the only undisputable factor for increased risk of developing MS. Extremely high dosed vitamin D3 is often used as the only available therapy for MS patients in poor countries (which cannot afford the super expensive fancy drugs).
@@christinearrand8208 Well some doctors..., when I came in with that giant attack back in 2004, she just said I should take a few days off. BUT, luckily she added that she must give me a recommendation to see a neurologist, due to the double-vision I had (among other symptoms, like complete loss of balance). She also added, that while she has to give me that paper, I do not have to go there and that a visit to a neurologist will just take a whole day of my time with zero result (!). After basic neuro exam, the neurologist called an ambulance for me due to the massive finding.
Tingling in hands, back of head, and legs, muscle twitching, dizzy when I look up, dizzy when I look down, bad balance, shooting pain for no reason, tired, cant stay awake sometimes, drift to the right when I walk sometimes, bad balance, episodes of BAD Vertigo so bad I feel like I'm in a washing machine, hard to walk because legs are tired, cramps, headaches, toes are always numb, etc, etc Now 5/31 Diagnosed with Optic Neuritis
My mom started having symptoms in her mid thirties, her equibrim and numbness and she went blind in one eye temporarily. She never drank alcohol but had trouble with balance. She had the worst case scenario, she lost weight to 90 pounds at 5 foot 6 inches tall and she passed away really young. The numbness in her legs was extreme and physical therapy was one of the last things we tried. Sending positive thoughts and I’m glad that there’s a lot more advancements in modern medicine. Hope you’re doing the best and thank you for this video. 🙏 my mom I miss her, she was basically paralyzed waist down and couldn’t walk, the depression was so bad before she passed.
@@Bboo-pl3wb thank you so much! I hope you’re doing well and there’s a lot more information now with modern medicine and technology! I appreciate you and thank you so much 💙💙
Well 20 years ago most doctors didn’t even believe in fibromyalgia. They said it was just a made up condition. I did get diagnosed with it back then and I wouldn’t tell anyone, including new doctors because I would feel embarrassed because of the conflicting opinions on it. I really had MS back then, 12 lesions, but I didn’t meet the “McDonald Criteria” so they couldn’t officially give me a diagnosis. I was so frustrated with the drs back then I just stopped going and just dealt with the MS on my own for years.
Thank you for the upload and sharing. I got diagnosed with ms in 2012. My first symptones was quiet a bit. It started with having vertigo symptones..went to the doctor and got told that i had crystals in one ear. But it became worse, then the right side of my mouth started to hang from time to time and had troubles to talk. It was horrible because people looked at me weird and didnt know on whats going on. Then i couldnt move my right leg. I got send directly to a neurologist and then i got diagnosed with ms relapsing remitting. And i do have it too when i look down...it feels that my head weights heavy then. And yes i still struggle with balance problems but it got improved by actually doing weight training. I can talk and walk normal again. Hearing you talking about it really makes me emotional. Stay strong 💕 youre a ms warrior queen. Lots of love towards you and your family
I am in the middle of figuring out if I have MS or a related condition. The vibrating in my legs and the feeling of like I am going to drop. I also have a hard time getting up and down. And a lump and lower back pain was my first problem.
Ooh, girl! Low back pain is awful. I have many of these symptoms but after paying so much money with no answers and insurance rejecting all of the tests doctors want, and I feel better... I'll just have to stay focused on hydration, spinal alignment, anti inflammation diet/ lifestyle I'll have to crack on with life. I had a brain MRI and was told I have a beautiful brain. They only did an mri in my low back and neck, no lesions. They couldn't tell me what caused me to lose vision completely in my left eye for about 45 minutes. They said I have chronic migraines. The guessed that the reason I couldn't walk or stand was due to a Herniated disc. They were quick to suggest back surgery but after I scolded that idea, they sent in another doctor that retracted the suggestion because I was young. She already knew I wouldn't go through with the surgery (too many I've met have had more issues within 5 years of back surgery than before they had the surgery).
I’ve been having these symptoms after I had a heat stroke at work last year. They can’t figure it out. But the more I research the more point out to MS.
My colleague with MS told me to contact my doctor as was concerned about my symptoms. I’ve always had periods numb/ hands, fingers and sometimes legs. Often when I look down I get a shooting electric pain in my lower back. I had awful back pain in February and couldn’t even shift my weight in bed, was given painkillers and figured it was a trapped nerve. My legs were wobbly, I was off balance. I’m always clumsy and off balance but my legs felt very shaky. Ive also been very lightheaded and dizzy every day. It hasn’t completely gone away, got really bad again on Friday and for the last few days and I have been in pain. I also was diagnosed with adhd this year for brain fog, confusion, lack of focus etc Not sure if this is anything and is a bit embarrassing but for the last few months I can’t seem to empty my bladder fully. I’ll start to go and then it stops like I’m done but I can tell I’m not! Anyway, will mention these things to physiotherapist on Friday x well done for pushing and for getting diagnosed x I hope you’re well and this video is very helpful xxx
Thank you for this video. My GP thinks I have MS and has referred me to a neurologist. The symptoms you described are exactly what I have been experiencing and not knowing how to describe. Thank you so much!
I'm being referred to a neurologist as I over the last few months have had to have a suprapubic catheter fitted as I don't feel the sensation to wee until my bladder has alot of urine in it. Also I have difficulty sometimes getting out of my mouth what I want to say correctly. And keep laughing at things I don't usually find funny. I. Dont know if it's stress or neurological but seeing this makes me feel more not alone like. Hope your feeling better and great video.
Judee Moonbeam Thank you. I was actually relieved when I was diagnosed because it confirmed that I wasn’t crazy 😂🙈 which seems strange to thing about. I hope you’re doing well 🙂 x
Thank you for you video 🙏 I find some many things related as a young mom . I’m in the stage of having symptoms & finding answers / test . You are a light of hope for whatever it happens 💙
I was told by the radiologist that I have lesions all over my brain. That I either had ms or severe brain trauma at some in my life. The neuro doc said no way to test for Ms. So I dropped it. I now have a lot of problems that add up toMs . But no doc here will test. I'm 70 now and just deal with it. 🙏 bless you.
Thank you so much. I realised just today actually that my latest symptom is difficulty swallowing. Haven't been offically diagnosed yet but, ja, I've basically had symptoms my whole life. My appointment with the neurologist is next week 11 May.
This video makes me feel less isolated about everything. I tend to ignore alot of smaller things that go on mainly because they feel normal to me. I first got an mri done because i had optic neuritus and they done the scans as a precaution only. They found lessions in my brain and had lumber puncture which tested positive for ms markers. They dont want to give me full diagnossis and treatment as they say its not progressed. But i feel it coming and going in sometimes diffrent ways and i know its this so i feel pretty alone with it all. Im havung a bit of a bad day of it today so looked on youtube for what others have experianced . It all concerns me as i work a pretty physical job in construction and dreading that day i cant do it any more 😪. Thanks for the video its good to see others experiances and know im not alone
I had no symptoms before being diagnosed with MS the one and only symptom I had was I woke up and lost sight in my left eye, once that happened it took 3 months of tests and I was diagnosed.. I even had an MRI three years prior( for an unrelated reason) of being diagnosed and my neurologist told me that there was no signs of MS whatsoever at that point
Don’t know what changes in hormones go on when you’re pregnant but it seems like replicating that process could provide MS patients quite a bit of relief long term.
Oh my. I’ve been doing research because of a series of health things that I haven’t been able to get diagnosed. Your story sounds an awful lot like mine. Now if I could only a doc to take me seriously....
Same! They don’t take me seriously. Years and years of them not listening . First I was misdiagnosed with lupus, then they said it’s fibromyalgia. I’m in the process of getting the proper testing done from a new physician. Every single last symptom I experience . Doctors favorite lines are “ you’re too young for anything to be that wrong with you” HUH . If I can put the pieces together… how come the doctors can’t? It sucks . ANA kept coming back positive and they dismissed that. We just gotta keep advocating for ourselves!
@@keannadawson2366 I ended up getting a new doctor who immediately sent me for an MRI. I just got the results which showed several lesions. I hope you get some answers soon!!
I definitely agree with your advice that you should write down all of your symptoms and bring the list to the consultation. And get those pathology diagrams and draw all the parts of your body where you're feeling tingles, pains, or numbness. If you show it to them it will be quicker than explaining everything. Very often GPs or specialists will want to rush you out of the room before you've finished explaining, because they treat you like you're 'whinging' or won't shut up about all the stuff that you are feeling. So they'll miss connecting the dots and delay diagnosis. Writing it down will also help you keep a record of progress and potential triggers, such as exercise, heat, cold, etc.
Thank you for your videos. It has given me courage to see my doctor because I’m having similar symptoms. I hope you are doing well! I noticed that you haven’t posted a video in awhile 🙂
I thought i had MS, neurosurgeon told me i was being dramatic and was very dismissive. Mri came back with a brain tumours..so not ms but goes to show doctors can be quick to say..unlikely or very low chance of finding something on a brain mri .
I never wait for Dr to tell me what tests he wants. I usually tell him what I want. I investigate everything, and working at a hospital 45 years, ordering everything there is to order for patients, picking the brains of all the Dr's I come across, I have usually figured out what tests I need. I had my Dr order a neurologist because of MS symptoms. It could be my cervical spine causing symptoms and that I asked to have checked out also. I ofcourse don't know everything, but you have to be your own advocate anymore. Either Dr's are too burnt out or have too many patients,. They don't spend enough time with you. Especially GPs . They have so many patients to take care of.
Yes, am a fighter MMA, and coach for more than 29 years experience, now dealing with MS and Paraneoplastic syndrome,,, similar symptoms and I still keep my track going to the gym and others,,, but it really hit you, I mean I know I have it when I try to do normal things always do, and my body shoot down,, thank yoj for info, be strong be champ
I'm waiting for testing to come back I also have cerebral palsy and cancer so we were attributing all of it to that and my new doctor is figuring it out thank you for this video
Thank you so much for this video. To sit with you and hear your storey helps with my fear and frustrations in this process of getting down to what’s happening with me. My Dr’s are on it and for sure it takes time to get diagnosed. Love your videos on this .
I have been having these spells- I will get up and all the sudden my body shakes and if I don’t reach for something, I fall. It’s been freaking me out. They are checking my heart, but I believe it’s an MS symptom. It’s scary.
You’ve literally described everything I currently experiencing. I’ve had moments where my legs don’t work, I’ve got numb patches, tingling etc. I’m still having trouble getting drs to listen. I previously had an mri for some of my earlier symptoms but came up clear, and was sent on my way. This was a helpful insight into the process.
Hi , I made a list for my doctor after going for many years with ms symptoms, he screwed my list up and through it in the bin luckily my wife was there and insisted on further investigations , the doctor said I will refer you to neurology but when they find nothing don't come back with the same symptoms , a year later after mri blood tests and lumbar puncture I was diagnosed with ms and put on ocrevus, the trouble is doctors always blame everything on anxiety , my neurologist thinks I have had ms for around 20 years
Hey Rhian thank you so much for the guitar string description 😊 iv been having difficulty describing that sensation as i also have ms diagnosis 18mts ago and like yourself seemingly have had ms for 10yrs plus undiagnosed. Thanks for ur videos ❤ take care ❤
Your stories have really hit home for me , I was diagnosed with MS 5 months ago (October 25 2021) I am 19 years old I I just found out I am expecting baby number 3 . I have numbness throughout my body , with tremors , fatigue , MS Hug , weakness throughout my legs .
Do ur babies have any autoimmune conditions Cos i (age 56)have ms (diagnosed in 2020) My son (aged 25) has mystenia Gravis (diagnosed in 2017) My daughter (aged17)diagnosed with lupus(in 2016)
Hi. What happened to you? I used to love your channel. I've been looking for it for a while and finally found it to notice you haven't posted a video in 3 years. And now it's all about MS. I have MS too. Been living with it for 11 years.
I've had noticeable MS for 20 years and my first signs when I was younger were pins and needles in my legs. I've had the neck thing for about a year too as has one of two of my mates who strangely developed MS AFTER we were friends. I'm now going through constant agony since early May in my right side and right leg. I have a lesion in my spine and my brain can't reroute the signals as the spine is very narrow. I'm just having to ride it out on major painkillers. However, I'm still functioning and I put this down to approaching my life with the mentality of a boxer. To me, I have an invisible sparring partner who will attack me at any moment and when I am able, I need to prepare myself for the next fight. It works for me and has kept me fit and healthy in the long run despite all the battles. Also, yes, it wasn't a brain tumour, phew! That's how I felt when I got diagnosed too. I have done my own research over the years and my hunch is that MS is bacterial in its origin (Clostridium Espringens Type B to be exact) and that the condition begins in the gut before spreading to the spine and around the brain. A Canadian experiment revealed that this is where the bacteria travels to in mice and caused MS symptoms in some of them. It was their toxins (their poo) that caused the issue for some of the mice. The bacteria is prevalent in farming (mostly calves and lambs) and I am not surprised that the areas where the pioneers of farming, the Vikings, is where MS is most prevalent. This is Norway and Scotland, with the highest occurrences per head of population in Orkney (about 1 in 100 people). Also, I wonder if there is a genetic link to having Viking DNA and being more prone to developing MS. I have Viking ancestry and several people I know with the condition could too judging by their looks and surnames. I'm sorry I can't back any of this up with links but just giving some pointers. Keep strong when you can. Approach it as a challenge and not a problem.
Wow that's a GREAT analogy with the boxer sparring thing! 👏🏻 i need to use it too, thank you! I don't know about the viking ancestry thing.. maybe it's about the location, being in the north..? Because ms is very prevalent in Finland too. I don't know.. 🤷🏻♀️ anyway, keep on sparring!! 💪🏻💪🏻
@@lamppuu1 Thanks, good luck and try to be positive. Another thing to back up my bacteria hunch is what you just mentioned about locations. If it is bacterial in origin, do they require specific temperatures and climates in order to exist, like Scandinavia for example? Also, I think it has been scientifically proven that the bacteria toxoplasmosis can influence your brain to like cats, since they thrive in cat litter.When I overheat or encounter a humid environment I often feel like I'm going to pass out. What if its a bacterial defence against conditions it doesn't like?
@@markjscottfilms I haven't had the time to study MS yet, but that seems very plausable! I've been thinking, could fibromyalgia be MS "cousin".. ? Because they have very much same symptoms. They both seem to be linked to gut bacteria. 🤔
Hiya Rhian I've now been suffering with MS now for 23 years and have been on various MS treatments and because of PML I was taken off of the previous treatments but I'm now on gilenya which is doing its job by keeping me Relapse free, I know what you're talking about when u described the tingling feeling from the top of your spine to the bottom of it when u look down, I've been in & out of my wheelchair to many time's to remember which isn't a hard thing to do as my memory has got really bad over the past few year's. I really hope you find the right treatment for yourself, your video has been most helpful to me so thanks a bunch please keep them coming ✌ peace✌ from Dulwhich London
Thank you for sharing your experience. I was just diagnosed with MS this year to noticing the numbing in my right hand. The year before I was also diagnosed with a pituitary tumor after dealing with migraines for 13 years. I know I should of went sooner but after last year I had enough because they were getting worse. Seems like I was having symptoms long before and didn’t know because I had trigeminal neuralgia, which is nerve pain in the face. I also had visual disturbances in my left eye. Light would seem brighter than the other eye.
Artistic Wolf Prints Bizarrely I also have Trigeminal neuralgia but mine is very mild - I have so many mild symptoms I sometimes forget about all of them. I struggle to brush my hair due to scalp sensitivity and get shooting pains. I can’t imagine having the same in your face ❤️ I’ve never had visual disturbances which I am thankful for. I’m so sorry you have all of that to deal with ❤️ sending you love and I hope you’re doing well
Rhian Gibson thank you for replying! I am taking gabapentin to stop the nerve pain in my face. I haven’t had pain since last year. It was pretty bad. I was in the bathroom beveling over the sink with a warm compress after every time I ate anything. The light flare part of that would happen then too. I too had the hair sensitivity but not too bad. The told me I probably never noticed the tingling in my hand until I asked to cut back on the Gabapentin doses. Thank you for sending your love, means a lot! I am doing better, just mostly tired a lot. I hope your doing well yourself. Sending you my love as well. 🤗
This is so interesting. I have a large cyst on my pineal gland. It needs to be checked out as it is large and could be a tumor. I have many ms symptoms, but my MRIs were clear from lesions. It is interesting that your diagnosis story did not end to the diagnosis of pituitary tumor! You are in good hands!
@@SatumainenOlento ahh it is quite possible that the lesions aren’t showing because the Pineal Glad could be covering it. Like mine was. Once the tumor shrunk that’s when they noticed the lessons. Definitely go get it checked out. Don’t wait years like I did. Best of luck to you.
Bless you. What a struggle for a young woman and new mum. I am 54 and have had symptoms for a few years. Recently diagnosed with low vitamin B12 levels. But despite injections, symptoms are worse. I also went to gym before 2020 and had to hold on for the treadmill. I walked into walls and was clumsy. My bloke at the time kept telling me to be careful. Walking in the street... wow... I have that. Not every day, but often enough. I simply find it hard to coordinate. I have since then left the UK so just getting injections of B12 and not sure what to do next. (Can't afford extensive tests here in Africa). The cognitive impairment was a big problem with the bloke I lived with. We lived together for 5 years and he expected me to be the same as when he met me. But, I had actually kept a diary in 2015. I was doing weird things like put the coffee powder in the water section of the coffee maker. I was married at the time and he also had no tolerance. So I kept that diary, because I have no-one to speak too. Thanks for your video.
Hey Rhian..great to hear your story. Have you heard about NMO? NMO more commonly has spine lesions. You can always ask your neurologist for a NMO anti body and MOG anti body test
I am 42 now, and live just outside of Johannesburg, South Africa. I was diagnosed with MS in early 2009, aged 28. I had needles & pins in my lower left leg since early 2007. The GP I first consulted in 2007 could not make a definite diagnoses but suspected that that I either had a stroke or MS. I eventually found an excellent neurologist in Johannesburg, whom had one look at my MRI and confirmed that I have MS. This neurologist specialise in MS and confirmed that more than 5 clusters, on the MRI of the brain confirmed that it was indeed MS. He then referred me to my current neurologist and am currently on Tuvigin 0,5mg capsules, like many other MS patients in South Africa, due to the efficacy of the meds.
Karen Myers I do, but sometimes I feel better than others. I cope because I have excellent family support and my other half is brilliant and recognises that I need a break sometimes. I hope you’re doing well x
Lovely video. I have had this (diagnosed) since 1987, although I had very mild symptoms in my late teens - now in my 60s and no further symptoms (very lucky). In my case I find the fatigue is the worst symptom. I think all you can do is give in to it and rest until you feel better - not much option really! I had a second child late in life and struggled as family support too far away. You manage, it's frustrating but we struggle on! Thank you for making these videos, I am sure you will be making this seem a lot less scary for newly diagnosed. Good luck! 🥰
The guitar strum vibration (or electrical jolt) you feel down your body is called lhermitte's sign and can be caused by a number of different things. It's best to get a referral to a neurologist as a primary care physician won't do anything for you. You are 100% correct when you say that a physician will not connect the dots if you've experienced multiple subtle symptoms over the course of years.
It reminds so much of my journey. It took 15yrs to diagnosis. I even stopped going to doctors as they would do a blood test and more and will tell me all results are fine. that I am growing, etc.... I was about 15yrs old at the time and felt like they don't listen and they think it is in my head only. So I had to deal with my strange sensations and pain by myself. I didn't want to go back to doctors and nurses and get a look like it is all in my head 🤪. I still feel like that when I hear that everything is normal. Which should be good news. In my case IT IS NOT GOOD NEWS and I am left in an "unknown state".I feel what I feel and I am told that everything is OK. It is not a happy moment as I know something is wrong. I feel it. For an example, my MRI came back stable but I can't see almost anything with one eye (like everything is washed off, mostly grey color maybe white and black. I just saw an eye doctor and he looked at picture and showed to me the collor difference in both eyes and explained that it indicates that I have demaged or dead nerves. That is not good news, but such a big relief 😅. I am fine it is not only in my head and I have a proof. I think that is hardest part where I feel that I need to document, research and bring a proof to Dr so I wI'll be taken seriously. I am not 15 years old anymore. But still I feel same When I got diagnosed it was a relief. Finally I have THE diagnosis: MS. Dr showed my MRI and brain full of white spots and said: " Good news, you don't have a brain tumor. If these white spots were tumors, I would have to give you only 4 months. It is MS." A note in my MRI said about lesions: "To many to count " That's my brain MRI. Luckily I have only 3 or 5 in my spine. And that is so in reverse from your lesions. But it is such a relief to finally get a validation. I knew about disability side of MS. Wheelchair, canes and I was OK 👌and ready to deal with it when time comes. " I HAVE MS, BUT MS DOESN'T HAVE ME!!!" However, I was not ready. I am not ready for a cognitive part. "MS got me here" I don't like to walk like a drunk and falling but I have an assistance dog 🐕🦺. Big help. Google assistant is annoying at times but a big help too. Note. Sticky notes, reminders, alarms and I still forget what I was doing or wanted to do Best of luck on your MS Journey! P.s. I take Ocravus now.
Aw that's awful. I feel for you. I gave up for 3 years cuz I wasn't getting anywhere. It was my boss telling me to go back because I was getting worse. Next mri is dec though
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Leaving this message in 2024, just so you know this video is still helping a lot of people. I haven't been given an official diagnosis but even before I saw this video, my neurologist is already mentioning the possibility of MS. And while I'm waiting to hear back on my Lumbar Puncture (spinal tap) results and what it reveals, I've been reading and checking videos like yours. And more and more, the symptoms are really lining up for MS. In many ways it would be a relief to finally have a diagnosis, since I've been going through non-stop hell for the last 4 years. So again, thank you for this. Hope things are going well for you now.
As a couple of others have mentioned, this is also an indication of B12 deficiency. It mimics MS because B12 is required to keep the protective sheath around the nerves healthy. Without it, it disintegrates and the damage begins. I experienced all of these symptoms, along with a ton of others. I could barely walk, fell constantly, was developing dementia symptoms, couldn't physically speak at times, severe vertigo, on and on. They thought I had MS, but when the scan was clean they didn't know what to do. Months later, when I literally felt like I was weeks from death, one doctor realized they'd missed doing a few blood tests. Severe B12 deficiency. With treatment, I had some improvement, but was left with permanent nerve damage. While off work trying to recover, I developed a severe neuroimmune disease and have been almost completely disabled since. Fast forward 14 years, I've been experiencing new symptoms so I just had more MRIs done. I've got damage and lesions on my brain stem. Since so many months passed between the initial MRI and discovering the B12 deficiency, and because there was no second MRI done, I don't know if it's damage from the deficiency or if I've developed MS now, too. Waiting for further testing to determine the answer. Long story short, B12 deficiency is extremely serious. It does the exact same damage as MS, and people are sometimes mistakenly diagnosed with MS when it's actually a deficiency that can easily be treated. For some reason, a lot of doctors neglect to test for B12. I was shocked when I was told this was what was initially making me so incredibly ill, but I've since learned a lot about it. The past 14 years have been medical chaos for me. This young lady is very right.... don't rely on doctors to automatically know the answer. You know your body. If something doesn't feel right, don't stop until you find a doctor who will help you.
I have chronic amemia but I have some ms symptoms which I’m freaking out about I’m having my monthly blood test tomorrow so I’m going to ask how low my b12 is if it’s not that low I’m going to get tested for ms
What form of B-12 do you take? As with many supplements sometimes certain forms don’t get as easily absorbed.
Do you have pernicious anemia? Because your story is exactly spot on like my mother's and she has pernicious anemia. I had to double check your username!
My blood tests have shown B12, iron and D3 deficiency. I've been taking the supplements for 2 months but my improvement has hit a wall and I've been getting symptoms that might be MS hug and Lhermitte's so I had a full spinal MRI, which showed a hotspot on my neck. Now I need a contrast brain/cervical spine MRI. So nervous.
@@4estdweller4ever I do B12 injections, and use sublingual tablets. Sublingual dissolve under the tongue and go directly into the bloodstream.
Your video encouraged me to go to the doctor and push for an MRI. No one thought I had MS. But I do. This was at the end of May. I’ve seen an amazing neurologist and am doing the paperwork and bloodwork etc to prepare for my first MS therapy - Ocrevus. Thank you so much for sharing. You literally are saving lives and getting people to seek out answers. ❤️
I’m so happy you advocated for yourself. I worked with a dr in Texas who blamed all my symptoms on Chronic EBV. Now I live in Oregon and I just did blood work and will go over it with the Dr. then we will schedule an MRI.
I think I might have ms, all the different symptoms I have, in the last 8 to 10 yrs in my mind point to it. I keep asking my Dr if all the individual symptoms I have could possibly all add up to 1 main illness but they treat 1 complaint each time, ignore the rest. But blinding headaches, numbness, tingling, eye pain, twitching, vertigo are getting worse and they won't listen. At this stage I think my own family think I'm exaggerating. With covid, it's getting impossible to be sent for tests, but I'm going to ask to be sent for mri. I'm even having panic attacks now, I'm just so fed up. It's great having videos like this, make you aware of what to look out for. Thank you
@@coolgirls4855 Definitely push for an MRI. With contrast to show any lesions and if they’re active or not. 🙏🏻
Just had my follow up from my MRI 2 lesions on my brain. Spinal cord is clear. Going through all the extra blood work to check for infections that mimic MS & getting a referral to the MS neurologist. So it begins…
@@kristabrown2675 I’m glad you got some answers. Yes, get other things checked and out of the way. Mine was caught relatively early. No idea exactly how many lesions on my brain but only one that was active. I’m scheduled for spine and thoracic MRIs in the spring. 🤞🏻
Yup, we have to diagnose ourselves and then pay a doctor for it...just great
OMG. This is the he best quote I have ever read. You need to put that quote on a coffee cup. It's beyond true and you worded it perfectly. Lol. Thank you, I never knew how to explain it. (That's what's been happening with me lately). :)
YES! Exactly how I feel lately.
Damn.. if this isn’t the truth🥳
yup and most GP are all idiots, and scared to refer you for a neurologist to get a mri. I bet they don't even know what ms is
I’m fighting right now to be diagnosed!! And I can’t walk right now smh
Cheers to you for keeping on those doctors!! My father was diagnosed when he was 45. He is now 89 and was able to stay out of a wheelchair until he was 80. He followed a special diet (fish, chicken, low fat, and took cod liver oil supplements). He has lived a very healthy life until his age caught up with him in the last few years. I sure know what you mean about doctors not listening though! I had slipped discs in my neck--suffered with tingling in my finger tips for 6 years and thought I had MS. My Chiropractor figured it out. I had the surgery to repair the slipped discs and got the feeling back in my left hand and most of my right hand. Life is unpredictable! Good luck and thanks for the great video!
Hello
I am not diagnosed of MS by any doctor.
My symptoms though points MS.
Age 24, buzzing sensation in feet, internal tremor from hip to sole, blurred vision (for seconds) in right eye, itching all over body.
I feel like i walk on bubble wrap, may be because of neuropathy.
I read about your father being fighting quite impressively with MS. This made my anxiety disappear, you got to believe me on this 😅.
Still i have a question, how is your father's vision? Is it still alright?
@@adivarma95 My dad experience blindness on one eye on occasion, but his vision was very good up til the end. Sadly, we lost him on August 12, 2020 at the age of 89. My sister and I went to see him one last time and he died within minutes of us seeing him. He is dancing in heaven! He was able to walk until about 10 years ago. My mom's brother also had MS and died at age 86. He walked up til the end!
@@andreameeuwsen6060 i am so sorry to hear that.
May his soul rest in peace.
Never met him but he still inspires me and other people who will read your comment!
Thanks for the reply, really appreciated!
@@andreameeuwsen6060he was waiting for you guys, I know it! The same happened with my grandma and when my mom came home from having to go out somewhere, when she heard her voice and mine, she left us. But honestly in my opinion it couldn’t have been more perfect timing. If my mom wasn’t there with her at her time of passing I would’ve felt so entirely guilty. ❤️🩹
Yes cheers to you for getting diagnosed
The comment section feels like such a support group❤️... Thank you for creating the platform for us to share our experiences. God be with us through this
Selma Blair. The famous actress went through the same exact thing. She had MS for years and no doctor would do a thing until she physically fell in front of her doctor because she couldn’t stand. Then she was diagnosed. Watch her story if you are interested. It sort of frightened me as I suffer from health anxiety so I try my best to stay away from these types of videos but it shocks me how doctors cannot connect these dots.
I'm currently in a spiral of health anxiety (convinced I have MS)... Too scared to go to the drs :((
@@eruusky same here
I think they do connect the dots, but because of their greed they wait until they are like 92% sure that the symptoms indicate a certain illness before they do any diagnostic testing/imaging, in an effort to reduce wear & tear of resources & equipment. They even train us to do this in the healthcare field (fraud waste and abuse training). It’s the reason people on Medicaid & Medicare have to wait constantly on approval by insurance b/c of too much wear & tear & waste of materials in the past for patients who’s symptoms were mild. Which is BS because they misdiagnosed people & dismiss ppl constantly all in an effort to protect “the equipment” that could easily be replaced but someone prefers to pocket funds used for that
@@eruusky Same 😑
Selma, it would be frightening. Did you have any sort of chronic itch next to your spinal column? I have and before I knew it the info went right into MS. WHAT????? I need to see a Neurologist I guess, what do you think? Thanks Janice
What really annoys me is when i describe to friends and family what i have going on like muscle twitches or whatever they say they have that "occasionally" too. I tell them the difference is i have it all the time! People need to stop minimizing other people's symptoms. Sometimes doctors do that as well. We know our bodies when something isn't right.
My sister has had so so many investigations for her autoimmune stuff and it’s debilitating. Every symptom she has, they put it down to mental health or chronic fatigue syndrome. She’s even spent £300 on a private appointment with a neuro. He referred her for bloods, MRI spine and MRI of the brain. Sadly no more information was found although MS was ruled out because there were no brain or spinal lesions. She’s 31 and doesn’t leave the house much due to pain and mobility issues despite being very slim. I’m so happy you managed to get diagnosed and get treatment that’s working for you ❤
Look into Ehlers Danlos Syndrome, Dysautonomia, or Marfan's.
@@thecrowsnest6963 thank you so much
I'm trying to figure out what's wrong with me now and MS has come up a few times. It's scary but I'm glad I found your video. It was really informative for someone like me trying to find some answers!
It’s hard to sleep at night because of the muscles constantly twitching and having to pee all night
Do you have MS?
Same! Antidepressants are the only things that let me sleep 😂 low dose amitriptyline (endep) and sertraline (zoloft). Highly recommend if you can get them.
@@OddlyElly do u also feel twich and how long ur feeling this.me too have
Peeing & the sweating is enoying
I wish I had had this info 15 years ago when I was first diagnosed. I have had soany of these symptoms and Dr's always dismissed them because they go away after awhile.
I got diagnosed three years ago. Thank you for sharing your story and letting people know how to advocate for themselves and what to look out for.
Thanks so much for your video and explanation. I may have the start of MS after a brain MRI showed lesions. It’s a sneaky disease and I love the way you filled in the lines between the dots. Your positivity and bubbly personality have filled me with the confidence to persevere with the specialist! Thanks again 🙏
I have Hyper Ehlers Danlos Syndrome.... symptoms are very similar to MS. ( it can sometimes be diagnosed before an MS diagnosis )
If youre Doctor is saying you dont have MS but you know theres something wrong .... ask them to look into EDS ( Ehlers Danlos Syndrome).
Best of luck , love and light to you all .
So true. I am not diagnosed yet and have hypermobility but also have TONS of MS neurologic symptoms and signs. We have both EDS and MS in my mom's side of family so I am still trying to get an accurate diagnosis.
I have EDS & MS
@@wandabowman8264 I am so sorry you are dealing with both terrible diseases.
I'm really scared that this may be the path that I am headed down. I already have a bunch of health issues and have noticed over the last few years of things progressing this way. I applaud your strength in sharing your story with such grace.
I have secondary progressive M.S and the twanging of the body feels like a pull back /let go catapultation of all my muscles and nerves so your guitar string description is another cool way of describing it, bless ya! ...❤️
On and off, I’ve been dizzy, lately terrible balance that can’t just be weak hip flexors and ankles, blurry vision, over my lifetime, autonomic nervous system changes, migraines, more blurry vision, odd peopioception and tripping often. Sometimes even breathing issues that aren’t asthma. Twitches in feet. And in general, sleeping issues, persistent urination and extreme lethargy. Either depression or something else, but ADd meds and coffee don’t even help anymore…. I totally get the pins and needles, but only after sitting. I’ll stop because it could be a lot of things and yet definitely sounds like remitting relapsing. I just pray that they find a cure for this thing 🙏
I was diagnosed 3/2021…. I didn’t take it serious because I was hit by a car at age 8…. Never told anyone because I was afraid of hospitals, my mom etc. So Now at age 47
Things at getting worse at a rapid pace… I always had pain while standing for a long period of time… I thought it was due to the accident…. I was walking fine in January or before then I was on a cane for months, now I’m on a walker….. Still haven’t received my first dose of medication for PPMS…. I’ve had every vaccine known to men COVID, booster, TB, Shingles etc. I can’t remember them ALL…. Pray for me that everything gets better…. I was a School bus driver for 20 years off and on and the doctor stopped me from driving because she said it was too dangerous….
Your description of symptoms at 4:50 are a perfect first hand account of Lhermitts Sign a huge indicator for MS 👍
I’m catching this one year later- I too had a long hard discovery journey. I fired 2 neurologist for pure stupidity- shame on them for not referring you to the MS Society for better up-to-date info. Bravo for sharing- my MS is now 21 years since diagnosis. After one year of Drs. and prescription drugs I found an alternative healing with raw foods, exercise and acupuncture- do your own research and find a support group as every MS case is personal. ♥️
Can you please share diet details
Just found your page and I was just recently diagnosed with ms this year and had a 3 month flare up I’m really glad to see that it looks like your living a good life ❤️I’m scared to see where life with ms is going to take me but I’m going to document it on my channel !
I was diagnosed in the last year mind started with ocular neuritis so I started to lose vision in my left eye but thankfully I got steroids in time and my eyes back to normal. I find being open honest with everyone even complete strangers 🤣is a good way to keep you mentally strong and make it more normal to you
My mom has MS, a terrible case too. She’s been bedridden for ten years and she’s only 50. I’m 20 and I’m currently experiencing lots of pain in limbs, burning, and slight tingling in my scalp and legs. I’m terrified but seeing how strong my mother was keeps me balanced. I’m going to my doctor soon so I really hope for the best.
Same ....even my mother had ms. Please do share your results . I'm feeling the samee way I'm also 20 yrs old
You and your mother might have a low B12 tissue level. A normal B12 blood test is no good, you need a methylmalonic acid test, which will show you the tissue level. My brother was misdiagnosed and suffered for years, when the whole time he had a low B12 at the tissue level. When it gets low, the methylmalonic acid is elevated and over time it eats the myelin sheaths from the nerves. Good luck
@@Okie343 i had that test done n its normal
I have lesions done on my brain n spine after a mri
This was after 20 yrs n more of symptoms ,fatigue, headaches, vertigo n double vision in 2010
Docs could not find anything wrong
Why ? I don't know ....although lesions where there....
But in 2018 i had a mri done n the prof of neurology found lesions on brain n spine n diagnosised me with ms
MS is caused by parasites - read Dr Hulda Clark’s book - The Cure For All Diseases … changed my life after being told I’d be in a wheelchair at 32!
Western Dr’s ignore the fact that parasites are the main cause for disease in the body, MS, Parkinson’s, ME, Cancers, Alzheimer’s … I healed myself and all my debilitating symptoms went away … double vision, extreme leg and arm pains and muscle spasms, brain fog and fatigue, memory loss, difficulty talking, walking etc …. all went away once I dealt with the leaky gut, Candida and parasite overload
@@Bluebell117 glad you were able to fix it. my mom died 11 months ago
As a medical student, some of the GPs I’ve shadowed are beyond awful, like I don’t even think they should be practising. Some of them literally forget like 50% of the clinical knowledge that they learn in med school and just remember the surface level things needed for day-to-day general practice like UTIs, skin conditions, contraceptives etc.
100% believe that.
YES!!
Holy sh*t, the guitar strum is exactly how I describe it. I don't see it as an "electrical shock" as it's come up in other resources. Really interesting video, thank you for sharing
Did you had a headache before everything starts. I am really depressed I was always healthy. 4 months ago everything started with headache, now I feel my legs super heavy and my head feels super tired everyday. And doctors can’t help me 😩.
I'm currently in the process of diagnosis and I'm pretty certain I have ms. I'm 29 with a 4 and almost 3 year old. I definitely relate to a lot of things. Thanks so much for sharing your experience. I'm lucky my Dr has referred me and hopefully I'll see them in the next 2-4 months
What were your results?
What symptoms did u had
The guitar string - yesssssss you finally put words to what I feel
Myelin decreases or shrinks
😭😭😭😭😭😭😭slurred speech trying to find the simplest words
What about your sensations with cold and heat?
I never am never comfortable . Freezing or burning up) AMEN HALLELUJAH
❤❤❤❤❤❤❤ bless you
I also suffer serious fatigue and have bad “brain fog”. Sad that MS have such a HUGE effect on memory and cognitive ability but I am SOOOO grateful for all the different meds that are now available and that they get more affordable every couple of years.
Thanks, Rhian - your MS journey sounds a little like mine - not exactly the same symptoms, but the isolated onset of “unrelated” symptoms which in hindsight can be connected by joining the MS dots is EXACTLY what I went through. Thank you for sharing your journey - I am sure it will provide others (both diagnosed and undiagnosed) with some peace of mind. Well done.
I was diagnosed yesterday. I’m waiting for my care plan and to start treatments.
I had all the symptoms she mentioned and I suffer with pain up to a point of a sudden paralysis. It goes and off without any reason/notice for 10 years. Been to different doctors but to no avail. But after we moved to India, an Indian doctor first check my Vitamin D level. True enough I am deficient of Vit D. She put me on 60k IU/week for 3 months and I carry on with a lower dosage up to this time. Im regularly checking my Vit D level every 6 months. Now, I’m as normal as any woman my age of 54. God is good for posting us in India and found a great doctor.
Can you tell me the name n place of the doctor
I’m having similar symptoms since sone time
That's great
Interested. Glad you are doing well now. It is well known that vitamin D deficiency is common in MS.
Diffencies in b12 and b9 D can lead to experience all Ms symptoms . I had huge muscles twitching in all my body
Omg me too! I had a b-12 definciancy. It's so scary when you don't know what is wrong 😥😰
How do we know if we get MS symptom or B12 deficiency? I got this symptom last week, then i ate Neurobiun forte (vit B1, B6 and B11) and then feel better but stil there is pain in my leg
@@kenhostnawa1752 You can always go to your doctor and have them run labs to check your b12 level to see if it’s low
Always check with blood work at the doctors. B12 was the first thing my doctor checked with my symptoms and my levels were fine. Never assume. Just advocate for answers.
I'm allergic to B12.
From Canada here. Sorry about your delay in diagnosis. Yes, MS is elusive, but your symptoms combines with your young age, should have set off alarm bells with the doctor, they are so classic. Glad you know and have treatment.
U
P
I have bad health anxiety and avoid doctors at all costs... I have a history of diagnosing myself with illnesses and I'm currently convinced I have MS but it could just be the health anxiety...
Stop watching these videos ❤
I have this problem too! I diagnose myself with the worst things!
Me too :(
That is literally why I’m watching this. Self diagnosed... for some reason it’s comforting to know I’m not the only person that does this 😣
Same have been having shakiness to the point where if I go upstairs my legs are super shaky. But that’s my only symptom.
Thank you for your video on MS. I'm 62 and believe I've had it undiagnosed since 27. Miserable and sick all this time.
I’m 66 and had symptoms on and off since I was around 30. No answers always blame it on something else or they try and google! Two episodes lasting 30 mins each time where I couldn’t put a sentence together led me to an MRI. Lesions demyelination indicate maybe MS with a follow up recommended in 6 months. My GP says he doubts that I would have MS.
I pretty much had the same symptoms plus a couple more. Doctors are a joke. So I cleaned up my diet. Got rid of processed foods and sugar and I’m never looking back. I feel so much better. My symptoms have gone away. Try cleaning up your diet first.
I went to the doctor last month on a Tuesday with numbness in my hands, feet and stomach (first numbness flareup ever), and by the Friday of that week, i was diagnosed with MS. makes sense that the process was so smooth where i live in Tasmania. world leaders in MS research down here.
Wow! That was quick. I've been trying to get I'd of "MS"diagnosis for 10 years. I'm in this category, but they are missing something. I have ataxia- severe resting and it is not MS related. I have achalasia, an auto immune disease not related to MS. But in this"box", it's hard to get a doctor to listen. Need to come to your side if the world for better docs
Thats good to hear im in Melbourne and had eye pain that was really annoying after a multitude of ophthalmology tests which I did fine in they said optic disc looks slightly funny but im ok, I obviously looked stress so they said MRI as a precaution. Sure enough optic nerve was inflamed I asked if there were lesions she said yes 50-50 you will get MS and referred me to a neuro and im still waiting 7 months later to see them. Im still hoping it was B12 deficiency (vegan) but every twitch or pain i have extreme anxiety i don't know when ill get any information.
With what exams they diagnosed you? Mri in the brain only?
@@skunkpireas6364 Brain and neck MRI
@@TheDrewpdog thanks
Thanks for this. I am 61 years old and have been having symptoms since a bout of measles when I was 25. Only one doctor joined the dots and sent me for an MRI when I was 53. Unfortunately I had a major panic attack and the MRI didn’t happen. Then I had to move due to domestic abuse. Now all these years later I am still battling to get a doctor to take my concerns seriously. In December 2021 I had an episode where my right leg decided not to walk anymore and I was hospitalised. An MRI on the spine showed nothing contributing to that problem. I went to see my doctor who has referred me to a neurologist as I told him I was worried it could be MS. However it’s nearly May and still no appointment. But your video has spurred me on to make a detailed list of symptoms. Thanks for the inspiration xx
I’ve just watched this. I’m at the point of waiting for mri for suspected brain tumour or ms. I had a diagnosis of fibromyalgia about 7/8 years ago and have been on medication to control it but new things are appearing and they are not associated with fibro. Especially the problems walking, like walking through waist deep water or treacle. So much effort. Other things I’d put down to peri-menopause but I’m questioning it all now. Was helpful to hear your experience. X
Such an open and honest account of your MS journey. Well done for sharing Rhian. Sometimes, just being able to put a name to something helps reduce the stress of not knowing. xx
Lisa Dixon Thanks Lisa ❤️ that’s exactly it, it felt like a relief when I was diagnosed. I know you’ve had your own health struggles so thank you so much for your comment - it means a lot ❤️
Hope you and bubs are doing well xx
@@rhiangibson1544 Rhian, how are you now?
God bless n hugs.
From Europe
Me …Ms since 2002 …. My sister died from uro-sepsis due to ms .the heat or any temperature change kills me the burning skin and itch u can’t scratch and fatigue . I had covid and now long covid. She describes things beautifully
I was recently diagnosed, thanks to finally getting an MRI and EEG. I, too, was relieved that it wasn't a brain tumor.
Tbh I would prefer a benign brain tumour than ms. Have my neurologist appointment next week
@@desklamp701 Me too. A tumour can be removed. MS is a lifetime sentence.
You are one heck of a brave lady. Thank you for doing this video. I will keep you in my prayers.
A lovely and great video about MS, thanks for sharing. One important tip: make sure, that You and Your kids are receiving plenty of vitamin D3. Plenty means sever thousand I.U. each single day.
My first MS symptom popped up in August 1997, followed by just a few small symptoms later. Finally a big relapse in January 2004 lead to a MS diagnosis. I can still walk and talk, even though according to my MRI that is highly unlikely :-) Have been taking 2x 5000 IU of vitamin D3 since 2004, D3 level in my blood is (just) 75. Everybody should have this value over 50, while MS patients should aim for a value around 80.
So does vit D helps?
Lhermites sign is a disturbance in sensation when you put chin to chest. I dealt with this since I was 11
Its funny how DRs miss this so often. I was diagnosed at age 20 in Feb 09"
@@laraibkhan8386 Yes, it does. Also lack of VitD during the first 15 years of life is pretty much the only undisputable factor for increased risk of developing MS. Extremely high dosed vitamin D3 is often used as the only available therapy for MS patients in poor countries (which cannot afford the super expensive fancy drugs).
@@christinearrand8208 Well some doctors..., when I came in with that giant attack back in 2004, she just said I should take a few days off. BUT, luckily she added that she must give me a recommendation to see a neurologist, due to the double-vision I had (among other symptoms, like complete loss of balance). She also added, that while she has to give me that paper, I do not have to go there and that a visit to a neurologist will just take a whole day of my time with zero result (!). After basic neuro exam, the neurologist called an ambulance for me due to the massive finding.
Tingling in hands, back of head, and legs, muscle twitching, dizzy when I look up, dizzy when I look down, bad balance, shooting pain for no reason, tired, cant stay awake sometimes, drift to the right when I walk sometimes, bad balance, episodes of BAD Vertigo so bad I feel like I'm in a washing machine, hard to walk because legs are tired, cramps, headaches, toes are always numb, etc, etc
Now 5/31
Diagnosed with Optic Neuritis
How you feeling ?? I hope you Are doing good sending you a big hug
What kind of shooting pain?
Wanted to add that trauma as in child birth releases benign MS. Mine came from a traumatic head injury-
Good luck in your healing journey ♥️
I think the trauma of them vaxing new moms, pregnant moms and giving young woman so many shots.
My mom started having symptoms in her mid thirties, her equibrim and numbness and she went blind in one eye temporarily. She never drank alcohol but had trouble with balance. She had the worst case scenario, she lost weight to 90 pounds at 5 foot 6 inches tall and she passed away really young. The numbness in her legs was extreme and physical therapy was one of the last things we tried. Sending positive thoughts and I’m glad that there’s a lot more advancements in modern medicine. Hope you’re doing the best and thank you for this video. 🙏 my mom I miss her, she was basically paralyzed waist down and couldn’t walk, the depression was so bad before she passed.
😢 Hopefully your mum is now in peace
😢
@@Bboo-pl3wb thank you so much! I hope you’re doing well and there’s a lot more information now with modern medicine and technology! I appreciate you and thank you so much 💙💙
@@christinahurt7505 thank you 🙏🙏💙
The electrical sensation you are talking about is called Hermitte sign when you flex your neck you will have this tingling sensation
Lhermitte
I'm having numbness in hands and feet, vision problems, dizziness, tingling, bladder issues, all blood work is good..
MS won't show up in blood work
Yeah it sounds like you have to request to be tested for MS specifically-just going off of what others are saying in this comment sectio
What an amazing young lady. This video will help so many people. God bless you and sending good wishes for the future. xx
It took me 21 years to get a Fibromyalgia diagnosis and now they think it is possibly MS instead. I'm awaiting my Neurology appt!
Well 20 years ago most doctors didn’t even believe in fibromyalgia. They said it was just a made up condition. I did get diagnosed with it back then and I wouldn’t tell anyone, including new doctors because I would feel embarrassed because of the conflicting opinions on it. I really had MS back then, 12 lesions, but I didn’t meet the “McDonald Criteria” so they couldn’t officially give me a diagnosis. I was so frustrated with the drs back then I just stopped going and just dealt with the MS on my own for years.
Thank you for the upload and sharing. I got diagnosed with ms in 2012. My first symptones was quiet a bit. It started with having vertigo symptones..went to the doctor and got told that i had crystals in one ear. But it became worse, then the right side of my mouth started to hang from time to time and had troubles to talk. It was horrible because people looked at me weird and didnt know on whats going on. Then i couldnt move my right leg. I got send directly to a neurologist and then i got diagnosed with ms relapsing remitting. And i do have it too when i look down...it feels that my head weights heavy then. And yes i still struggle with balance problems but it got improved by actually doing weight training. I can talk and walk normal again. Hearing you talking about it really makes me emotional. Stay strong 💕 youre a ms warrior queen. Lots of love towards you and your family
Miss Nathalie j
I am in the middle of figuring out if I have MS or a related condition. The vibrating in my legs and the feeling of like I am going to drop. I also have a hard time getting up and down. And a lump and lower back pain was my first problem.
This is me
Ooh, girl! Low back pain is awful. I have many of these symptoms but after paying so much money with no answers and insurance rejecting all of the tests doctors want, and I feel better... I'll just have to stay focused on hydration, spinal alignment, anti inflammation diet/ lifestyle I'll have to crack on with life.
I had a brain MRI and was told I have a beautiful brain. They only did an mri in my low back and neck, no lesions.
They couldn't tell me what caused me to lose vision completely in my left eye for about 45 minutes. They said I have chronic migraines. The guessed that the reason I couldn't walk or stand was due to a Herniated disc. They were quick to suggest back surgery but after I scolded that idea, they sent in another doctor that retracted the suggestion because I was young. She already knew I wouldn't go through with the surgery (too many I've met have had more issues within 5 years of back surgery than before they had the surgery).
Thank you!! I've just been told I've got MS and it scared the hell out of me. This has helped me to see it can be ok.
Yeah, doctors be like you're young, you're fine! But that's doesn't work always this way... Hope you're doing well!
I’ve been having these symptoms after I had a heat stroke at work last year. They can’t figure it out. But the more I research the more point out to MS.
My colleague with MS told me to contact my doctor as was concerned about my symptoms. I’ve always had periods numb/ hands, fingers and sometimes legs. Often when I look down I get a shooting electric pain in my lower back. I had awful back pain in February and couldn’t even shift my weight in bed, was given painkillers and figured it was a trapped nerve. My legs were wobbly, I was off balance. I’m always clumsy and off balance but my legs felt very shaky. Ive also been very lightheaded and dizzy every day. It hasn’t completely gone away, got really bad again on Friday and for the last few days and I have been in pain. I also was diagnosed with adhd this year for brain fog, confusion, lack of focus etc
Not sure if this is anything and is a bit embarrassing but for the last few months I can’t seem to empty my bladder fully. I’ll start to go and then it stops like I’m done but I can tell I’m not! Anyway, will mention these things to physiotherapist on Friday x well done for pushing and for getting diagnosed x I hope you’re well and this video is very helpful xxx
Thank you for this video. My GP thinks I have MS and has referred me to a neurologist. The symptoms you described are exactly what I have been experiencing and not knowing how to describe. Thank you so much!
How did it go? Did you get MRIs done?
I'm being referred to a neurologist as I over the last few months have had to have a suprapubic catheter fitted as I don't feel the sensation to wee until my bladder has alot of urine in it. Also I have difficulty sometimes getting out of my mouth what I want to say correctly. And keep laughing at things I don't usually find funny. I. Dont know if it's stress or neurological but seeing this makes me feel more not alone like. Hope your feeling better and great video.
Stay strong! I’ve been living with MS since ‘09.
How hard is it and is ms progressive? Will this just get worse?
Thank you for sharing all this. It helps to hear from other MS'ers about their symptoms, to remind me I'm not going nuts :-)
Judee Moonbeam Thank you. I was actually relieved when I was diagnosed because it confirmed that I wasn’t crazy 😂🙈 which seems strange to thing about.
I hope you’re doing well 🙂 x
@@rhiangibson1544 The neurologist who diagnosed me said that was a very typical response....relief/vindication....
The guitar string/strum is a great way to describe what I’m feeling!
I’m 66 years old and thought for years I have MS.. I have those symptoms .. some of them snd doctors seem to think I’m a hypochondriac..
Thank you for you video 🙏 I find some many things related as a young mom . I’m in the stage of having symptoms & finding answers / test . You are a light of hope for whatever it happens 💙
I am a newly diagnosed MS person I am older 79ys young. Your vedio was every informative. Thank you I will continue to get your info.
I was told by the radiologist that I have lesions all over my brain. That I either had ms or severe brain trauma at some in my life. The neuro doc said no way to test for Ms. So I dropped it. I now have a lot of problems that add up toMs . But no doc here will test. I'm 70 now and just deal with it. 🙏 bless you.
Same story here . Be 61 in March. Dealing with morons here where I'm at. I became 420 friendly 12 yrs ago and that's my medicine. 😊
Thank you so much. I realised just today actually that my latest symptom is difficulty swallowing. Haven't been offically diagnosed yet but, ja, I've basically had symptoms my whole life. My appointment with the neurologist is next week 11 May.
Good news. MRI shows I don't have MS but doctor says I have fibromyalgia.
Thanks for the video. It helps people relate and seek help. The earlier you get diagnosed is the key. All the best for the future.
This video makes me feel less isolated about everything. I tend to ignore alot of smaller things that go on mainly because they feel normal to me. I first got an mri done because i had optic neuritus and they done the scans as a precaution only. They found lessions in my brain and had lumber puncture which tested positive for ms markers. They dont want to give me full diagnossis and treatment as they say its not progressed. But i feel it coming and going in sometimes diffrent ways and i know its this so i feel pretty alone with it all. Im havung a bit of a bad day of it today so looked on youtube for what others have experianced . It all concerns me as i work a pretty physical job in construction and dreading that day i cant do it any more 😪. Thanks for the video its good to see others experiances and know im not alone
I hope you are well. Please get a referral to see an MS Neurologist, if you haven't seen already.
Thank you for your video. I think as women we have so much to do Sometimes we ignore Our own symptoms
I had no symptoms before being diagnosed with MS the one and only symptom I had was I woke up and lost sight in my left eye, once that happened it took 3 months of tests and I was diagnosed..
I even had an MRI three years prior( for an unrelated reason) of being diagnosed and my neurologist told me that there was no signs of MS whatsoever at that point
Don’t know what changes in hormones go on when you’re pregnant but it seems like replicating that process could provide MS patients quite a bit of relief long term.
Oh my. I’ve been doing research because of a series of health things that I haven’t been able to get diagnosed. Your story sounds an awful lot like mine. Now if I could only a doc to take me seriously....
Same! They don’t take me seriously. Years and years of them not listening . First I was misdiagnosed with lupus, then they said it’s fibromyalgia. I’m in the process of getting the proper testing done from a new physician. Every single last symptom I experience . Doctors favorite lines are “ you’re too young for anything to be that wrong with you” HUH . If I can put the pieces together… how come the doctors can’t? It sucks . ANA kept coming back positive and they dismissed that. We just gotta keep advocating for ourselves!
@@keannadawson2366 I ended up getting a new doctor who immediately sent me for an MRI. I just got the results which showed several lesions. I hope you get some answers soon!!
Doctors that don't take patients seriously, shouldn't be doctors.
I definitely agree with your advice that you should write down all of your symptoms and bring the list to the consultation. And get those pathology diagrams and draw all the parts of your body where you're feeling tingles, pains, or numbness. If you show it to them it will be quicker than explaining everything. Very often GPs or specialists will want to rush you out of the room before you've finished explaining, because they treat you like you're 'whinging' or won't shut up about all the stuff that you are feeling. So they'll miss connecting the dots and delay diagnosis.
Writing it down will also help you keep a record of progress and potential triggers, such as exercise, heat, cold, etc.
Thank you for your videos. It has given me courage to see my doctor because I’m having similar symptoms. I hope you are doing well! I noticed that you haven’t posted a video in awhile 🙂
I thought i had MS, neurosurgeon told me i was being dramatic and was very dismissive. Mri came back with a brain tumours..so not ms but goes to show doctors can be quick to say..unlikely or very low chance of finding something on a brain mri .
Thanks for sharing glad to here you talk about again we with Ms suffer every day its a struggle thanks!
I never wait for Dr to tell me what tests he wants. I usually tell him what I want. I investigate everything, and working at a hospital 45 years, ordering everything there is to order for patients, picking the brains of all the Dr's I come across, I have usually figured out what tests I need. I had my Dr order a neurologist because of MS symptoms. It could be my cervical spine causing symptoms and that I asked to have checked out also. I ofcourse don't know everything, but you have to be your own advocate anymore. Either Dr's are too burnt out or have too many patients,. They don't spend enough time with you. Especially GPs . They have so many patients to take care of.
Yes, am a fighter MMA, and coach for more than 29 years experience, now dealing with MS and Paraneoplastic syndrome,,, similar symptoms and I still keep my track going to the gym and others,,, but it really hit you, I mean I know I have it when I try to do normal things always do, and my body shoot down,, thank yoj for info, be strong be champ
I'm waiting for testing to come back I also have cerebral palsy and cancer so we were attributing all of it to that and my new doctor is figuring it out thank you for this video
Prayers
I have Cerebral palsy too and Bell’s palsy how are you doing?
Thank you so much for this video. To sit with you and hear your storey helps with my fear and frustrations in this process of getting down to what’s happening with me. My Dr’s are on it and for sure it takes time to get diagnosed. Love your videos on this .
I have been having these spells- I will get up and all the sudden my body shakes and if I don’t reach for something, I fall. It’s been freaking me out. They are checking my heart, but I believe it’s an MS symptom. It’s scary.
You’ve literally described everything I currently experiencing. I’ve had moments where my legs don’t work, I’ve got numb patches, tingling etc. I’m still having trouble getting drs to listen. I previously had an mri for some of my earlier symptoms but came up clear, and was sent on my way. This was a helpful insight into the process.
Vitamin d deficiency also causes those symptoms. Dr rarely check for vitamins d deficiency
Any update?
Not yet, gp referral processes in Australia are notoriously slow.
A proper mri n ct scan is recommended n blood testing for cns
@@deekelly952did you get a diagnosis?
Hi , I made a list for my doctor after going for many years with ms symptoms, he screwed my list up and through it in the bin luckily my wife was there and insisted on further investigations , the doctor said I will refer you to neurology but when they find nothing don't come back with the same symptoms , a year later after mri blood tests and lumbar puncture I was diagnosed with ms and put on ocrevus, the trouble is doctors always blame everything on anxiety , my neurologist thinks I have had ms for around 20 years
Exactly! It's NOT anxiety!
your description about the guitar string vibration is perfect😊 hope you are doing well nowadays dear.
Sneha Paudel I’m doing really well. Thank you so much, I hope you’re well too 🙂
Sneha Paudel That’s a well-known MS symptom called Lhermitte’s Sign. It’s pronounced ler-meets.
Hey Rhian thank you so much for the guitar string description 😊 iv been having difficulty describing that sensation as i also have ms diagnosis 18mts ago and like yourself seemingly have had ms for 10yrs plus undiagnosed. Thanks for ur videos ❤ take care ❤
Your stories have really hit home for me , I was diagnosed with MS 5 months ago (October 25 2021) I am 19 years old I I just found out I am expecting baby number 3 . I have numbness throughout my body , with tremors , fatigue , MS Hug , weakness throughout my legs .
Do ur babies have any autoimmune conditions
Cos i (age 56)have ms (diagnosed in 2020)
My son (aged 25) has mystenia Gravis (diagnosed in 2017)
My daughter (aged17)diagnosed with lupus(in 2016)
My babies didn’t have any autoimmune disease coming out , not sure about the future though . Praying for your family
Are they all vax'd? @@shireenramnarain4005
Hi did was your 3 Rd baby full term , dint it cause any issues in delivery
Hi. What happened to you? I used to love your channel. I've been looking for it for a while and finally found it to notice you haven't posted a video in 3 years. And now it's all about MS. I have MS too. Been living with it for 11 years.
I've had noticeable MS for 20 years and my first signs when I was younger were pins and needles in my legs. I've had the neck thing for about a year too as has one of two of my mates who strangely developed MS AFTER we were friends. I'm now going through constant agony since early May in my right side and right leg. I have a lesion in my spine and my brain can't reroute the signals as the spine is very narrow. I'm just having to ride it out on major painkillers. However, I'm still functioning and I put this down to approaching my life with the mentality of a boxer. To me, I have an invisible sparring partner who will attack me at any moment and when I am able, I need to prepare myself for the next fight. It works for me and has kept me fit and healthy in the long run despite all the battles. Also, yes, it wasn't a brain tumour, phew! That's how I felt when I got diagnosed too.
I have done my own research over the years and my hunch is that MS is bacterial in its origin (Clostridium Espringens Type B to be exact) and that the condition begins in the gut before spreading to the spine and around the brain. A Canadian experiment revealed that this is where the bacteria travels to in mice and caused MS symptoms in some of them. It was their toxins (their poo) that caused the issue for some of the mice. The bacteria is prevalent in farming (mostly calves and lambs) and I am not surprised that the areas where the pioneers of farming, the Vikings, is where MS is most prevalent. This is Norway and Scotland, with the highest occurrences per head of population in Orkney (about 1 in 100 people). Also, I wonder if there is a genetic link to having Viking DNA and being more prone to developing MS. I have Viking ancestry and several people I know with the condition could too judging by their looks and surnames.
I'm sorry I can't back any of this up with links but just giving some pointers. Keep strong when you can. Approach it as a challenge and not a problem.
Interesting my grandfather had Viking ancestry to
Wow how interesting! Food for thought
Wow that's a GREAT analogy with the boxer sparring thing! 👏🏻 i need to use it too, thank you! I don't know about the viking ancestry thing.. maybe it's about the location, being in the north..? Because ms is very prevalent in Finland too. I don't know.. 🤷🏻♀️ anyway, keep on sparring!! 💪🏻💪🏻
@@lamppuu1 Thanks, good luck and try to be positive.
Another thing to back up my bacteria hunch is what you just mentioned about locations. If it is bacterial in origin, do they require specific temperatures and climates in order to exist, like Scandinavia for example? Also, I think it has been scientifically proven that the bacteria toxoplasmosis can influence your brain to like cats, since they thrive in cat litter.When I overheat or encounter a humid environment I often feel like I'm going to pass out. What if its a bacterial defence against conditions it doesn't like?
@@markjscottfilms I haven't had the time to study MS yet, but that seems very plausable! I've been thinking, could fibromyalgia be MS "cousin".. ? Because they have very much same symptoms. They both seem to be linked to gut bacteria. 🤔
Hiya Rhian I've now been suffering with MS now for 23 years and have been on various MS treatments and because of PML I was taken off of the previous treatments but I'm now on gilenya which is doing its job by keeping me Relapse free,
I know what you're talking about when u described the tingling feeling from the top of your spine to the bottom of it when u look down,
I've been in & out of my wheelchair to many time's to remember which isn't a hard thing to do as my memory has got really bad over the past few year's. I really hope you find the right treatment for yourself, your video has been most helpful to me so thanks a bunch please keep them coming ✌ peace✌ from Dulwhich London
Thank you for sharing your experience. I was just diagnosed with MS this year to noticing the numbing in my right hand. The year before I was also diagnosed with a pituitary tumor after dealing with migraines for 13 years. I know I should of went sooner but after last year I had enough because they were getting worse. Seems like I was having symptoms long before and didn’t know because I had trigeminal neuralgia, which is nerve pain in the face. I also had visual disturbances in my left eye. Light would seem brighter than the other eye.
Artistic Wolf Prints Bizarrely I also have Trigeminal neuralgia but mine is very mild - I have so many mild symptoms I sometimes forget about all of them. I struggle to brush my hair due to scalp sensitivity and get shooting pains. I can’t imagine having the same in your face ❤️
I’ve never had visual disturbances which I am thankful for. I’m so sorry you have all of that to deal with ❤️ sending you love and I hope you’re doing well
Rhian Gibson thank you for replying! I am taking gabapentin to stop the nerve pain in my face. I haven’t had pain since last year. It was pretty bad. I was in the bathroom beveling over the sink with a warm compress after every time I ate anything. The light flare part of that would happen then too. I too had the hair sensitivity but not too bad. The told me I probably never noticed the tingling in my hand until I asked to cut back on the Gabapentin doses. Thank you for sending your love, means a lot! I am doing better, just mostly tired a lot. I hope your doing well yourself. Sending you my love as well. 🤗
This is so interesting. I have a large cyst on my pineal gland. It needs to be checked out as it is large and could be a tumor.
I have many ms symptoms, but my MRIs were clear from lesions. It is interesting that your diagnosis story did not end to the diagnosis of pituitary tumor! You are in good hands!
@@SatumainenOlento ahh it is quite possible that the lesions aren’t showing because the Pineal Glad could be covering it. Like mine was. Once the tumor shrunk that’s when they noticed the lessons. Definitely go get it checked out. Don’t wait years like I did. Best of luck to you.
I really relate to this so thank you for posting. I was diagnosed seven months ago and like you I was relieved it was MS and not a brain tumour.
Bless you. What a struggle for a young woman and new mum.
I am 54 and have had symptoms for a few years.
Recently diagnosed with low vitamin B12 levels.
But despite injections, symptoms are worse.
I also went to gym before 2020 and had to hold on for the treadmill.
I walked into walls and was clumsy. My bloke at the time kept telling me to be careful.
Walking in the street... wow... I have that.
Not every day, but often enough. I simply find it hard to coordinate.
I have since then left the UK so just getting injections of B12 and not sure what to do next.
(Can't afford extensive tests here in Africa).
The cognitive impairment was a big problem with the bloke I lived with.
We lived together for 5 years and he expected me to be the same as when he met me.
But, I had actually kept a diary in 2015.
I was doing weird things like put the coffee powder in the water section of the coffee maker.
I was married at the time and he also had no tolerance.
So I kept that diary, because I have no-one to speak too.
Thanks for your video.
Sorry he didn't have patience for you!!! 🙏🙏
Thanks so much for sharing your story! May I ask did you have to get a spinal tap (Lumbar puncture) in order to get diagnosed?
I have MS! Great analogy with the guitar string!!
Hey Rhian..great to hear your story. Have you heard about NMO? NMO more commonly has spine lesions. You can always ask your neurologist for a NMO anti body and MOG anti body test
I am 42 now, and live just outside of Johannesburg, South Africa. I was diagnosed with MS in early 2009, aged 28. I had needles & pins in my lower left leg since early 2007. The GP I first consulted in 2007 could not make a definite diagnoses but suspected that that I either had a stroke or MS. I eventually found an excellent neurologist in Johannesburg, whom had one look at my MRI and confirmed that I have MS. This neurologist specialise in MS and confirmed that more than 5 clusters, on the MRI of the brain confirmed that it was indeed MS. He then referred me to my current neurologist and am currently on Tuvigin 0,5mg capsules, like many other MS patients in South Africa, due to the efficacy of the meds.
How do you feel
Great video. Do you suffer from the dreadful fatigue related to MS and other auto immune diseases and how do you cope with it?
Karen Myers I do, but sometimes I feel better than others. I cope because I have excellent family support and my other half is brilliant and recognises that I need a break sometimes.
I hope you’re doing well x
Lovely video. I have had this (diagnosed) since 1987, although I had very mild symptoms in my late teens - now in my 60s and no further symptoms (very lucky). In my case I find the fatigue is the worst symptom. I think all you can do is give in to it and rest until you feel better - not much option really! I had a second child late in life and struggled as family support too far away. You manage, it's frustrating but we struggle on! Thank you for making these videos, I am sure you will be making this seem a lot less scary for newly diagnosed. Good luck! 🥰
The guitar strum vibration (or electrical jolt) you feel down your body is called lhermitte's sign and can be caused by a number of different things. It's best to get a referral to a neurologist as a primary care physician won't do anything for you. You are 100% correct when you say that a physician will not connect the dots if you've experienced multiple subtle symptoms over the course of years.
Hey what are some of the causes for it?
It reminds so much of my journey. It took 15yrs to diagnosis. I even stopped going to doctors as they would do a blood test and more and will tell me all results are fine. that I am growing, etc....
I was about 15yrs old at the time and felt like they don't listen and they think it is in my head only. So I had to deal with my strange sensations and pain by myself.
I didn't want to go back to doctors and nurses and get a look like it is all in my head 🤪. I still feel like that when I hear that everything is normal. Which should be good news.
In my case IT IS NOT GOOD NEWS and I am left in an "unknown state".I feel what I feel and I am told that everything is OK. It is not a happy moment as I know something is wrong. I feel it.
For an example, my MRI came back stable but I can't see almost anything with one eye (like everything is washed off, mostly grey color maybe white and black. I just saw an eye doctor and he looked at picture and showed to me the collor difference in both eyes and explained that it indicates that I have demaged or dead nerves. That is not good news, but such a big relief 😅. I am fine it is not only in my head and I have a proof.
I think that is hardest part where I feel that I need to document, research and bring a proof to Dr so I wI'll be taken seriously. I am not 15 years old anymore. But still I feel same
When I got diagnosed it was a relief. Finally I have THE diagnosis: MS. Dr showed my MRI and brain full of white spots and said: " Good news, you don't have a brain tumor. If these white spots were tumors, I would have to give you only 4 months. It is MS." A note in my MRI said about lesions: "To many to count " That's my brain MRI. Luckily I have only 3 or 5 in my spine. And that is so in reverse from your lesions. But it is such a relief to finally get a validation.
I knew about disability side of MS. Wheelchair, canes and I was OK 👌and ready to deal with it when time comes. " I HAVE MS, BUT MS DOESN'T HAVE ME!!!"
However, I was not ready. I am not ready for a cognitive part. "MS got me here" I don't like to walk like a drunk and falling but I have an assistance dog 🐕🦺. Big help. Google assistant is annoying at times but a big help too. Note. Sticky notes, reminders, alarms and I still forget what I was doing or wanted to do
Best of luck on your MS Journey!
P.s. I take Ocravus now.
Aw that's awful. I feel for you. I gave up for 3 years cuz I wasn't getting anywhere. It was my boss telling me to go back because I was getting worse.
Next mri is dec though