This topic comes up quite often in FB groups. So many people say that their neurologist never gave them the full type of MS. Thank you so much for this info.
Thank you so much for all your vids about ms. My husband has RRMS for the last 29 years and is doing good..As had only 3 relapses in his life,even though he has over 40 lesions in the brain. He is walking and very strong. He is 52 years old and one of the first in Ireland to start on beteferon when it came to Ireland. He is on gilenya for the last 3 years,went on gilenya after his last attack. Thanks again for all you do Caroline from Ireland 😃
I just got re-diagnosed with MS. I was diagnosed 15 years ago, my neurologist retired and I've been left with the struggle of proving I have it. After many attempts with many different doctors, I found one. She performed an MRI, still didn't think I have it. She then ordered a lumbar puncture. 11 bands!!!!! 11! Thank you for your videos. They provide me with information I cannot get anywhere else
Long time no talk Dr B. I'm sorry I haven't been around for your videos. I recently just got a new neurologist because my doctor retired. The new doctor said that I have PPMS now. I was told I had RRMS originally. Over 5 years into this horrible disease and I'm still fighting. I'm going to be put on Lemtrada after I get my next MRI. I hope everything's good with your clinic Dr B
I got diagnosed two days ago, im from Dubai and randomly stumbled upon you. before my flare up that caused my right eye to go blurry i never even heard of MS. So i was so blessed to find you at such an early stage of my diagnosis because you've answered so many questions and gave great advice! And the comments under your videos reassured me that you have impacted the MS community positively. Ill be getting all my MS info from you and my neurologist. Not tryna stress myself and get another flare up😅
for me it was 26th of last month, it all started and even i was never heard of this disease. my hands are very stiff and heavy? Do you feel any difference in hand as well?
I was diagnosed yesterday with relapsing-remission. After watching some videos, the comments sections seem very bleak. But, just wanted to say good luck on your journey fellow MS Warrior.
I was diagnosed with PPMS 5 yrs ago, and it wasn't a slow increase...I was scrambling mountains just before I got diagnosed, then a slight limp about 6 months later, and a year later a permanent limp. Now it's a permanent limp and can't do too much physically such as changing bed sheets. No spinal tap, but I had many MRI's during the diagnosis.
Thanks Dr.B, I've had RRMS now for nearly 24 yrs, I've never asked any of any doctors, you included, to explain the difference between these two forns of MS. Thank you fur this and EVERY OTHER video you have ever made! WE APPRECIATE YOU SO MUCH! There are many NeuroChiefs in our MS Warrior battles, amoung whom YOU ARE one of THE BESTEST ONES! Thank you! 🫶🏽🧡💪👏🏻🫂
By me, it was a no-brainer: "I never HAD an 'attack', doctor, I'm ALWAYS like this". That was in 2018 after a brain scan full of lesions and a positive spinal fluid tap. PPMS diagnosis and straight onto Ocravus, stable around EDDS 6.5 - 7.5 ever since. 😔 🙏 Best regards from Jerusalem! 🤗 ❤️ ‼️ 🙌
PPMS. Wow now I understand. My onset was blind in one eye in brazil on holiday. 2000. saw Dr said it was the HEAT. ANYWAY over a few years i had the weirdest things happening to me, balance off, hated heat, slowly very slowly my mobility changed, 2006 i couldnt walk that well stiff legs, but i could still function and do my job. then I woke up and struggled to stand, the doctor came and my journey started. i saw neuro in 2007, and had VEP test confirmed O.N bilaterailly. I noticed i used to walk my dog across the park everyday, and slowly over time i struggled to do that, in fact one day i had to ring my hubby to get me i was exhausted. but still functioning. I never spent time in bed, but my life seemed to change drip by drip, more problems with eyes, i had 3 lesions on spinal cord, the LP my neuro said just confused more as muddied the waters. He said he knew i had MS but was confused. now this was back in 2015 in UK. Late 2015 i again had issues with eyes, colour vision off etc, and i was more disabled but still functioning. my bladder and bowel had been a nightmare as well oh i was signed off work several years before as my cognitive issues were dire. still functioning in late 2015 i had another VEP test, and in january 2016 was diagnosed with PPMS. so where am I now? oh yes still functioning, but mobility is very bad now, ad i struggle to walk, i am 73 now. I have such awful pain in my left leg i could scream, constantly have bladder and bowel issues, and my eye sight has deteriorated i have to now wear prism glasses. IN THE UK THERE ARE ONLY 1,500 with PPMS, but over 100,000 with RRMS. MY ISSUE is people dont believe I have MS because i do not lay in bed all day and still function to a certain point. its getting harder and harder, but i do it just. but overtime its robbing me of my life, i worked hard before i got MS, and bit by bit, slowly things were taken away from me. i didnt get to have ocrevus as i was too old and too far gone. I dont do stress well and feel hopeless now. I just want to give up and be with my husband. he passed in 2017. I JUST ALSO WANT care workers and people who work in the field to understad that there are DIFFERENCES in MS. The ignorance i come up with is draining. Oh funny enough my vision in 2000 happened about a year after i recovered from EBV. Anyway thanks for this video it makes it all so clear now.
I was diagnosed with MS June 2022, found after a TIA. After talking with the neurologist the MS explained the past 20+ years. I guess I was trying to avoid learning about MS but your videos are very informative and helpful.
Thank you! I wish you were my doctor. Besides having MS (which is no walk in the park) - it's the doctors who are refusing to listen or offer adequate help. I didn't go to medical school for a reason - so I'm really not sure why I have to read medical journals and pharmacology reports on medications to "tell" my doctor my course of treatment. It's frustrating and adds to the depression and isolation this disease already causes. I appreciate how much care you offer your patients and the rest of us who watch your videos. Know that you are a very special doctor.
The medical system is truly broken in the US. I’m beyond frustrated and gave up. I’m suffering, without insurance at this point. Without the scam insurance you can’t get treatment. With insurance you can’t get treatment! So why throw away all that money 😞
This is my first experience with you, Dr. Boster. I was diagnosed with MS in 2009 and believe to have relapsing MS. Your explaination cleared it up for me and will be watching your channel from now on. Thank you for all the info.
I really appreciate your videos. I was diagnosed last year at 51. Since my early 20s, I have knowingly battled ulcerative colitis, depression and anxiety, endometriosis, and adenomyosis. Last June I was diagnosed with multiple sclerosis, and this past month with lipedema. Not lymphedema. Lipedema. And hypermobile ehlers danlos syndrome- which seems to partner with lipedema 🤔. Anyway, this past 1.5years have been a lot but your channel has helped me so much! The more I know the less out of control everything feels right now.
Thanks for another great video Dr. Boster! It seems PPMS is always described as a slow steady progression. I’d love a video discussing the less common, aggressive PPMS. MS that causes loss of walking ability in less than 5 years from first symptom. Thanks again for this video❤️
Thank you Dr Boster, this is absolutely excellent! In my experience medical professionals do not explain how they reach a diagnosis- it’s so important to explain the process. 🔥🔥❤️🔥🔥🔥
I seem to have both. No spinal lesions, many tipical brain lesions, postive spinal fluid, relapses (now under control) and constant progressive worsening independent of relapses. My feeling is that only the relapsing part of the MS is well treated, but most of my daily issues are come from the progressing part
My first Brain MRI came back saying most likely MS. Neurologist made a negative diagnosis with zero clinical interview or questions. Delayed care for almost 2 years. No attacks ever, but lesions on brain and spinal cord. PPMS
Thank you so much for this channel, this is all new to me, I was diagnosed last year, and they never told me which kind I have...I never really had an episode, per say. I guess it was a gradual decline and change of my gait that made me realize something was wrong. By the time all the tests were completed after almost 6 months, I was diagnosed with MS and quit working, since it was getting too hard to stand on my feet at work the entire time as required. Currently I am simply trying to fight it with a good diet and the neiurologist in the area where I'm moving to has me on Prednisone, which helps tremendously. It made such a difference, it's like night and day and I really would like to stay on it as long as I can. I tried weaning myself off of it and I just got so bad I could hardly walk. So I'm afraid to get off of it at this point. I hope the Dr. keeps me on it for awhile. Is it so bad to take it long term? It's affordable, unlike the other MS drugs, and available, and actually makes me feel better. Why wouldn't I want to take it as opposed to the other meds which don't offer any of that?
This was so good - a refresh in the basics plus you answered many questions I still had 24 years after diagnosis. Thanks for clarifying RRMS and PPMS ! My story is clear: first relapsing remitting, the last ten years definitely progressive. The only wiggly part is the middle. But that’s a whole other story for another video: SPMS. Thanks, doc!
I was diagnosed July 2023 after lots of body traumas. Surgeries, twin pregnancy with undiagnosed HELLP syndrome. Took 4 months to be approved for a treatment so while i waited for insurance to help several falls and hospitalizations. I have had one full dosage of OCREVUS back in March, however right now i’m experiencing really bad symptoms leading up to next dose. Nov 25th. I asked the dr yesterday which one out of curiosity she said RRMS. However, there are lesions on both my brain and spinal cord. I feel like this past year has been one long exacerbation. it’s like i improve back to my MS baseline for a few weeks and then i fall and then the cascade of events starts all over again. Dr wants me to consider Kesimpta vs Ocrevus bc the symptoms I AM HAVING all during the “crap gap” for OCREVUS IS KILLING Me right NOW.
I was diagnosed with RRMS after the one and only “attack” that I have ever had. However when I was diagnosed I have many lesions throughout my spine and a few in my brain. Since then I have had no noticeable attacks but I have declined at a high rate of speed anyway. In the last 4 years I went from walking up to 40 miles in a week to not being able to walk through the grocery store. I brought up possible PPMS with my last Nuerologist and he just brushed me off. My husband and I are seriously thinking about making the 4 hour drive to see you!
Thank u Dr B - you describe and explain my PPMS perfectly - I try to be positive and optimistic - knowledge is power eh? I'll go down fighting- best wishes all MS Warriors 🦋🌻
I am 39 and just got diagnosed, I don't know what to feel moving forward, can you please at least share your age and an insight in how it's been . I've notice we get more info from each other then our neurologist
Dec28/16 lost ability to grip pen, trouble spking loudly & clearly. I got btr in 2017 but 2yrs of investigations clued me in to why I had been having foot drop since 2013, balance issues & walking stiffly if I had been sitting for a while. Diagnosed w/PPMS Oct/18!
I am a Gulf War Veteran who suffers from Gulf War Illness. GWI has similar/same symptoms of CIS or MS. I have swollen optic nerves and presumed neuroinflammation. Two MRIs in the last 6 years has shown no lesions. My fear is I will be misdiagnosed with CIS or MS. My Illness is the result of exposure to multiple neuro toxins to include chemical nerve agent sarin gas.
My original neurologist was obsessed with me not having abnormal fluid. I ended up having to have multiple LPs. When I sought another neurologist, I told him I didn't want another puncture. He eventually confirmed an RMS diagnosis.
So a slow run up of symptoms without an acute event seems to be more indicative of PPMS? My diagnosis is RRMS but I had a run of symptoms resulting in an acute event which was optic neuritis and gait problems. I’d had a fuzzy eye starting 6 months and numbness in my feet 1 month before the acute optic neuritis. I also had vertigo episodes 4 years prior. My spinal fluid was positive for oligoclonal bands. My ACE markers are normal. My eyes recovered completely. I was initially diagnosed with RRMS then quickly for Neurodarcoidosis instead, but I am being treated with Ocrevus for RRMS again now. My MRIs were never typical for MS. I refer to it as being treated “as an MS patient”. These conditions are tricky to diagnose! The constant pain in my glutes and legs is the most obvious current symptom. X
I was diagnosed with ppms last year. With me, after running distance, my ankle wouldn’t respond when I tried to move it. It gradually would happen with shorter distances. The last time I ran it was around 3 miles.
My Neurologist needs to learn alot of pointers from u. 've never seen my MRI ,ever. I will not go back to my neuroligist. I just get worse just by seeing him. Doesn't let u speak.
I will hear this Friday if i have MS. I can't imagine that it is NOT MS but we will see. The example with the cane is exactly what happend to me. I use my fathers (who died last year from cancer) cane to walk. In 3 years time i went from having a leg that just does not work after a 30 min walk to me using a scooter often. So yeah it does not look good.
Am I wrong in thinking that PPMS, RRMS, SPMS, etc are not different types of MS? I feel they are concurrent components of the same MS. It's just which is observed before, the progression or the accute relapses. And as it's hard to observe progression, most people are diagnosed with MS with a relapse. And since the immune system slows down with age, so do relapses and the accute component leaves and the slow progressive component gets eventually noticed. So if we have never had an accute event that was observed, we eventually will get diagnosed with the progressive component first. I guess this boils down to the leaky pool model. In PPMS the stalagmites all happened to be under the water level. If this makes sense, why do we even talk about different types of MS rather than concurrent MS components?
There are times i wish i had netter direct access to my neurologist. Im in the VA system it has happened several times that i have an issue that my referral is run out . I have to call my primary ,sometimes make an appointment that can be days or weeks out then get referral renewed then i can get to neurologist. Often i just wait for regular appointments and this happened weeks or months ago . Some of the testing he jas wanted is is in second or third time shooting for approval. It gets fun.
Dr Boster, can you evolve into another category the older you get? I am 71 now and was diagnosed with R& R when I was 38. Thank you for your updates !!!
If you can do a video about secondary progressive it would be super nice, my neuro is a moron, been diagnose since 2021 and she don't know what my kind are and don't want to tell me. "It's too soon to tell... " Hum... Sorry but I disagree... I relapsed 3 times, now I slowly decline, around 5.5 and 6.5, no relapse just new problem... Bowel, bladder, bedroom... My body's half numb.... Im sure I "switch" to secondary progressive. Please Doc.B Explain to me!!!
I’m not entirely sure what a good day is supposed to feel like. Dx in January, prescribed copax… took me 6 months to save up enough money to begin the injections … of which I’m halfway through. People keep asking if the shots are working & I didn’t know what to tell them. I don’t think the treatment works like that?
So how did you tell that your loved one had MS My wife refuses to see a neurologist after over a year and she has many of these types of symptoms after a time with long COVID. 😢
Good morning Dr Boster..I love your bedside manner! Your videos are so informative and easy to understand. I'm having an MRI with contrast of my head and brain and a spinal MRI without. About month ago I started experiencing numbness in my right arm and leg I felt it gradually moving up my my arm and leg . Then electric zingers in my arms started about 3 weeks ago. My right foot is constantly bothersome ,especially at night, itchy at times, numb and a little painful. I'm so tired, not sure if it's just from waking up from my foot bothering me and/or the night sweats. I have gotten vertigo 4 times in past year. And on occasion double vision. And constant hot flashes and night sweats...ALLLLL day everyday. Which I know could be construed as menopause, but they are constant. Having said all that.... In your opinion, should I have my Dr give me order to have contrast for my spinal MRI too?
Gina, the contrast is helpful when the doctor reads the results, but if you have some allergy to it or something, they can still get, say, 80% of the info they need without it.
Thank you Doc, well articulated. what about sudden onset due to long covid leading to lesion in the brain and loss of function of upper and lower limbs within few days of tingling sensation ? is it PPMS or relapsing ?
I know that it is not connected to the topic of the video. But I’ve been wondering, can HIV cure MS? It sounds stupid but there is some logic to it. HIV weakens your immune system, DMT suppresses it. So can HIV work as DMT? Are there any recorded cases when people had both HIV and MS, and their MS was in a long remission? I tried to google it and ask my neurologist, she looked at me, as if I was crazy
Whatever kind I have makes it hard to say the right thing and answer questions the way I should. What kind does my doctor have if they don't ask the right questions and listen when I'm talking?
thank you your video was very helpful, one thing that has confused me though - I was diagnosed with RRMS but have lesions in both brain and my spinal cord, I have had at least 3 relapses in the last 2 years previous to starting Kesimpta a year ago. I have had no relapses in the last year MRI stable but I do have worsening of symptoms and gradually and slowly my walking is getting worse, neuro has been talking about progression of old lesions but says I still have RRMS. Is it possible to also have PPMS or SPMS at the same time as RRMS? thank you 🙏
Hi. I have a question for just about anyone that might be going through something similar, I have PPMS. My self care has gone down to about a 3 on a scale on 1-10. My biggest issue is water. It hurts so bad to be in water. Washing my hair is the worst. It hurts and I can’t do it all but twice a month. Is that normal?
I was diagnosised with RRMS due to the fact that my disabilities come and go without medication (parathesia & left homonymous superior quadrantanopia) but now adays I can barely even move on the regular due to the back pain which seems to be focused on the two spots I have clusters on. Due to this constant pain im wondering if my RRMS has turned into SPMS, of course this is youtube and I'll be seeking out my neuro soon lol
Hello Dr. Boster, trust all is well, I am 53 yrs old and was diagnosed with RRMS in 2002. Started off with Copaxone, then switched to Tecfidera and had a bad experience. My neurologist switched me to Kesimpta for the past 3 years which is a 1 time per month dosage . I recently switched to an FDA approved drug called Briumvi which is 2 times per year infusion..I had my first infusion on May 5 2024 and will have my 2nd infusion in November. Sometimes I feel like I should have stayed with Kesimpta as some days feel worst than before I switched.Im wondering if I should give it a year and take my 2nd infusion before deciding to go back to Kesimpta. Please let me know your thoughts as my main concern is my balance right now. I use a kane but i really have to be careful as I do not want to end up in a wheel chair..You feel me..Thanks Marc F.
At first I was diagnosed with RRMS and now my neurologist is saying it's aggressive relapsing ms. Haven't heard much about this kind. could you help me understand what this means.
Thanks for all the content. I was diagnosed with multi focal long segmented transverse myelitis about 2 years ago. I have yet to show any lesions on my brain but the lesion on the c spine has grown 3cm and I'm showing a "mccardle sign" - any insight or feedback? Thanks doc
thank you for making this video :) I have been in denial for 10 years, my seizure event, a new attack, made me believe it. He said my EDSS is 6.5 and there is no medication is available for 6.5 and higher - why is this. thanks again.
This topic comes up quite often in FB groups. So many people say that their neurologist never gave them the full type of MS. Thank you so much for this info.
Full type of MS??
@@RahatAsghar726I think she meant they were dx'ed with CIS or early MS?
Same
I didn't get a written confirmation/diagnosis of ppms until I had ms for >15 years
I wish you were still my Dr. Boster. This illness is awful. I appreciate what you do.
Thank you so much for all your vids about ms. My husband has RRMS for the last 29 years and is doing good..As had only 3 relapses in his life,even though he has over 40 lesions in the brain. He is walking and very strong. He is 52 years old and one of the first in Ireland to start on beteferon when it came to Ireland. He is on gilenya for the last 3 years,went on gilenya after his last attack.
Thanks again for all you do
Caroline from Ireland 😃
I also have RRMS nd had many relapse.
Can you please share your husband's lifestyle and diet. It will helpful for me.
I just got re-diagnosed with MS. I was diagnosed 15 years ago, my neurologist retired and I've been left with the struggle of proving I have it. After many attempts with many different doctors, I found one. She performed an MRI, still didn't think I have it. She then ordered a lumbar puncture. 11 bands!!!!! 11! Thank you for your videos. They provide me with information I cannot get anywhere else
Excellent video Dr. Boster! Thanks so much for sharing and being an excellent listener!
Glad you enjoyed it!
Long time no talk Dr B. I'm sorry I haven't been around for your videos. I recently just got a new neurologist because my doctor retired. The new doctor said that I have PPMS now. I was told I had RRMS originally. Over 5 years into this horrible disease and I'm still fighting. I'm going to be put on Lemtrada after I get my next MRI. I hope everything's good with your clinic Dr B
I got diagnosed two days ago, im from Dubai and randomly stumbled upon you. before my flare up that caused my right eye to go blurry i never even heard of MS. So i was so blessed to find you at such an early stage of my diagnosis because you've answered so many questions and gave great advice! And the comments under your videos reassured me that you have impacted the MS community positively.
Ill be getting all my MS info from you and my neurologist. Not tryna stress myself and get another flare up😅
for me it was 26th of last month, it all started and even i was never heard of this disease. my hands are very stiff and heavy? Do you feel any difference in hand as well?
I was diagnosed yesterday with relapsing-remission. After watching some videos, the comments sections seem very bleak. But, just wanted to say good luck on your journey fellow MS Warrior.
I also got diagnosed same time as yourself, I started kesimpta, would you be able to share with me what medication you chose and how your doing
I was diagnosed with PPMS 5 yrs ago, and it wasn't a slow increase...I was scrambling mountains just before I got diagnosed, then a slight limp about 6 months later, and a year later a permanent limp. Now it's a permanent limp and can't do too much physically such as changing bed sheets. No spinal tap, but I had many MRI's during the diagnosis.
Thanks Dr.B, I've had RRMS now for nearly 24 yrs, I've never asked any of any doctors, you included, to explain the difference between these two forns of MS. Thank you fur this and EVERY OTHER video you have ever made! WE APPRECIATE YOU SO MUCH! There are many NeuroChiefs in our MS Warrior battles, amoung whom YOU ARE one of THE BESTEST ONES! Thank you! 🫶🏽🧡💪👏🏻🫂
By me, it was a no-brainer: "I never HAD an 'attack', doctor, I'm ALWAYS like this". That was in 2018 after a brain scan full of lesions and a positive spinal fluid tap. PPMS diagnosis and straight onto Ocravus, stable around EDDS 6.5 - 7.5 ever since. 😔 🙏 Best regards from Jerusalem! 🤗 ❤️ ‼️ 🙌
PPMS.
Wow now I understand. My onset was blind in one eye in brazil on holiday. 2000. saw Dr said it was the HEAT. ANYWAY over a few years i had the weirdest things happening to me, balance off, hated heat, slowly very slowly my mobility changed, 2006 i couldnt walk that well stiff legs, but i could still function and do my job. then I woke up and struggled to stand, the doctor came and my journey started. i saw neuro in 2007, and had VEP test confirmed O.N bilaterailly. I noticed i used to walk my dog across the park everyday, and slowly over time i struggled to do that, in fact one day i had to ring my hubby to get me i was exhausted. but still functioning. I never spent time in bed, but my life seemed to change drip by drip, more problems with eyes, i had 3 lesions on spinal cord, the LP my neuro said just confused more as muddied the waters.
He said he knew i had MS but was confused. now this was back in 2015 in UK. Late 2015 i again had issues with eyes, colour vision off etc, and i was more disabled but still functioning. my bladder and bowel had been a nightmare as well oh i was signed off work several years before as my cognitive issues were dire.
still functioning in late 2015 i had another VEP test, and in january 2016 was diagnosed with PPMS. so where am I now? oh yes still functioning, but mobility is very bad now, ad i struggle to walk, i am 73 now. I have such awful pain in my left leg i could scream, constantly have bladder and bowel issues, and my eye sight has deteriorated i have to now wear prism glasses. IN THE UK THERE ARE ONLY 1,500 with PPMS, but over 100,000 with RRMS.
MY ISSUE is people dont believe I have MS because i do not lay in bed all day and still function to a certain point. its getting harder and harder, but i do it just. but overtime its robbing me of my life, i worked hard before i got MS, and bit by bit, slowly things were taken away from me. i didnt get to have ocrevus as i was too old and too far gone. I dont do stress well and feel hopeless now. I just want to give up and be with my husband. he passed in 2017. I JUST ALSO WANT care workers and people who work in the field to understad that there are DIFFERENCES in MS. The ignorance i come up with is draining. Oh funny enough my vision in 2000 happened about a year after i recovered from EBV. Anyway thanks for this video it makes it all so clear now.
I wish you were located here in Charlotte, NC. I gain so much information about my MS from your videos. Thanks
Thanks Doc this helps me understand what I'm going ppms is what I'm dealing with and Jesus is my hope and joy through this trial.
I was diagnosed with MS June 2022, found after a TIA. After talking with the neurologist the MS explained the past 20+ years. I guess I was trying to avoid learning about MS but your videos are very informative and helpful.
Thank you! I wish you were my doctor. Besides having MS (which is no walk in the park) - it's the doctors who are refusing to listen or offer adequate help. I didn't go to medical school for a reason - so I'm really not sure why I have to read medical journals and pharmacology reports on medications to "tell" my doctor my course of treatment. It's frustrating and adds to the depression and isolation this disease already causes. I appreciate how much care you offer your patients and the rest of us who watch your videos. Know that you are a very special doctor.
I hear you. This is my experience too.
The medical system is truly broken in the US. I’m beyond frustrated and gave up. I’m suffering, without insurance at this point. Without the scam insurance you can’t get treatment. With insurance you can’t get treatment! So why throw away all that money 😞
This is my first experience with you, Dr. Boster. I was diagnosed with MS in 2009 and believe to have relapsing MS. Your explaination cleared it up for me and will be watching your channel from now on. Thank you for all the info.
I really appreciate your videos. I was diagnosed last year at 51.
Since my early 20s, I have knowingly battled ulcerative colitis, depression and anxiety, endometriosis, and adenomyosis.
Last June I was diagnosed with multiple sclerosis, and this past month with lipedema. Not lymphedema. Lipedema. And hypermobile ehlers danlos syndrome- which seems to partner with lipedema 🤔.
Anyway, this past 1.5years have been a lot but your channel has helped me so much! The more I know the less out of control everything feels right now.
Thanks for another great video Dr. Boster! It seems PPMS is always described as a slow steady progression. I’d love a video discussing the less common, aggressive PPMS. MS that causes loss of walking ability in less than 5 years from first symptom. Thanks again for this video❤️
I just love how you explain things! Thank you!
You’re such a great teacher! Thanks for making this information so easy to understand.
My Internet Dr. of Choice. Thank you Dr. Boster.
THAT IS A GREAT QUESTION....
Thank you Dr Boster, this is absolutely excellent! In my experience medical professionals do not explain how they reach a diagnosis- it’s so important to explain the process. 🔥🔥❤️🔥🔥🔥
I seem to have both. No spinal lesions, many tipical brain lesions, postive spinal fluid, relapses (now under control) and constant progressive worsening independent of relapses. My feeling is that only the relapsing part of the MS is well treated, but most of my daily issues are come from the progressing part
My first Brain MRI came back saying most likely MS. Neurologist made a negative diagnosis with zero clinical interview or questions. Delayed care for almost 2 years. No attacks ever, but lesions on brain and spinal cord. PPMS
I used to be a golf professional
You are the best ❤❤
As usual fantstic video -thanks
This Dr. is the best at describing MS thank you ‼️‼️‼️‼️🫡🫡🫡🫡
Thank you so much for this channel, this is all new to me, I was diagnosed last year, and they never told me which kind I have...I never really had an episode, per say. I guess it was a gradual decline and change of my gait that made me realize something was wrong. By the time all the tests were completed after almost 6 months, I was diagnosed with MS and quit working, since it was getting too hard to stand on my feet at work the entire time as required. Currently I am simply trying to fight it with a good diet and the neiurologist in the area where I'm moving to has me on Prednisone, which helps tremendously. It made such a difference, it's like night and day and I really would like to stay on it as long as I can. I tried weaning myself off of it and I just got so bad I could hardly walk. So I'm afraid to get off of it at this point. I hope the Dr. keeps me on it for awhile. Is it so bad to take it long term?
It's affordable, unlike the other MS drugs, and available, and actually makes me feel better. Why wouldn't I want to take it as opposed to the other meds which don't offer any of that?
This was so good - a refresh in the basics plus you answered many questions I still had 24 years after diagnosis. Thanks for clarifying RRMS and PPMS ! My story is clear: first relapsing remitting, the last ten years definitely progressive. The only wiggly part is the middle. But that’s a whole other story for another video: SPMS. Thanks, doc!
I was diagnosed July 2023 after lots of body traumas. Surgeries, twin pregnancy with undiagnosed HELLP syndrome. Took 4 months to be approved for a treatment so while i waited for insurance to help several falls and hospitalizations. I have had one full dosage of OCREVUS back in March, however right now i’m experiencing really bad symptoms leading up to next dose. Nov 25th. I asked the dr yesterday which one out of curiosity she said RRMS. However, there are lesions on both my brain and spinal cord. I feel like this past year has been one long exacerbation. it’s like i improve back to my MS baseline for a few weeks and then i fall and then the cascade of events starts all over again. Dr wants me to consider Kesimpta vs Ocrevus bc the symptoms I AM HAVING all during the “crap gap” for OCREVUS IS KILLING Me right NOW.
Thank-you Dr Aaron ,excellent Monday morning video, so much appreciated sir. 😊
funny you used golf as an example. i walked off a golf course before my ppm diagnosis. good video
my biggest synlmptim was getting light headed after walking a short distance
I was diagnosed with RRMS after the one and only “attack” that I have ever had. However when I was diagnosed I have many lesions throughout my spine and a few in my brain. Since then I have had no noticeable attacks but I have declined at a high rate of speed anyway. In the last 4 years I went from walking up to 40 miles in a week to not being able to walk through the grocery store. I brought up possible PPMS with my last Nuerologist and he just brushed me off. My husband and I are seriously thinking about making the 4 hour drive to see you!
👋😃🧡 Hi Dr B! Thank you for always being our source of great information. It helps to take a bit of the scariness away!
This is a great video.
Ty for explaining all of this.
It breaks it down to the quick nitty gritty.
❤
#sharingiscaring
Glad it was helpful!
@@AaronBosterMD very - this is a HUGE area of confusion for MANY MS’rs. ❤️ what a great quick reference video.
Thank u Dr B - you describe and explain my PPMS perfectly - I try to be positive and optimistic - knowledge is power eh? I'll go down fighting- best wishes all MS Warriors 🦋🌻
Thanks Dr Boster- living with my diagnosis ppms for over 30 years least now I understand way better now 👍
I am 39 and just got diagnosed, I don't know what to feel moving forward, can you please at least share your age and an insight in how it's been .
I've notice we get more info from each other then our neurologist
Thank you Dr Boster…i always learn something new from your videos! you provide a great service.
Dec28/16 lost ability to grip pen, trouble spking loudly & clearly. I got btr in 2017 but 2yrs of investigations clued me in to why I had been having foot drop since 2013, balance issues & walking stiffly if I had been sitting for a while. Diagnosed w/PPMS Oct/18!
What’s the difference between PP MS and Secondary Progressive MS
Thanks Aaron!
Thank you Dr. Boster. I really love your channel. It has helped me SO much and continues to help me navigate my MS. ❤
I am a Gulf War Veteran who suffers from Gulf War Illness. GWI has similar/same symptoms of CIS or MS. I have swollen optic nerves and presumed neuroinflammation. Two MRIs in the last 6 years has shown no lesions. My fear is I will be misdiagnosed with CIS or MS. My Illness is the result of exposure to multiple neuro toxins to include chemical nerve agent sarin gas.
Thank you.
Thanks Doc. I hadn't realised that spinal tap markers could help determine which type of MS it is...
Thanks for a clear explanation Dr B! Another great video!!
Thank you explained brilliant
You are a rock star. Thank you for sharing your experience and wisdom 🙏 🙌 😊
My original neurologist was obsessed with me not having abnormal fluid. I ended up having to have multiple LPs. When I sought another neurologist, I told him I didn't want another puncture. He eventually confirmed an RMS diagnosis.
I really enjoy your videos. Thank you for doing them.
You are great! I hope you have the same binge with yours patients that they don’t understand much!!!😊
So a slow run up of symptoms without an acute event seems to be more indicative of PPMS?
My diagnosis is RRMS but I had a run of symptoms resulting in an acute event which was optic neuritis and gait problems. I’d had a fuzzy eye starting 6 months and numbness in my feet 1 month before the acute optic neuritis. I also had vertigo episodes 4 years prior. My spinal fluid was positive for oligoclonal bands. My ACE markers are normal. My eyes recovered completely. I was initially diagnosed with RRMS then quickly for Neurodarcoidosis instead, but I am being treated with Ocrevus for RRMS again now. My MRIs were never typical for MS. I refer to it as being treated “as an MS patient”. These conditions are tricky to diagnose! The constant pain in my glutes and legs is the most obvious current symptom. X
I was told my MS is “smoldering” any insight on this until I get back to my neurologist…..
And now with smoldering ms do these distinctions continue to hold?
Curious about what information you have about tumefactive MS.
I really would like to move out to Ohio and be your patient. I learned so much from listening to you and watching your videos.
Came here hoping to learn about how SPMS is differentiated as well, but disappointed that it wasn't included. I'm no less confused lol
I was diagnosed with ppms last year. With me, after running distance, my ankle wouldn’t respond when I tried to move it. It gradually would happen with shorter distances. The last time I ran it was around 3 miles.
These videos are so helpful.
Hi from Israel thanks for the simple explanation keep going
I don't have PPMS, I have SPMS. Because of what happened yesterday, I will have an emergency MRI today
My Neurologist needs to learn alot of pointers from u.
've never seen my MRI ,ever. I will not go back to my neuroligist. I just get worse just by seeing him. Doesn't let u speak.
Don’t find a neurologist! Find an neurologist who specializes in MS!!
I will hear this Friday if i have MS. I can't imagine that it is NOT MS but we will see. The example with the cane is exactly what happend to me. I use my fathers (who died last year from cancer) cane to walk. In 3 years time i went from having a leg that just does not work after a 30 min walk to me using a scooter often. So yeah it does not look good.
Obsoluntly extremely helpful. A big thank you.
Am I wrong in thinking that PPMS, RRMS, SPMS, etc are not different types of MS? I feel they are concurrent components of the same MS. It's just which is observed before, the progression or the accute relapses. And as it's hard to observe progression, most people are diagnosed with MS with a relapse. And since the immune system slows down with age, so do relapses and the accute component leaves and the slow progressive component gets eventually noticed. So if we have never had an accute event that was observed, we eventually will get diagnosed with the progressive component first.
I guess this boils down to the leaky pool model. In PPMS the stalagmites all happened to be under the water level.
If this makes sense, why do we even talk about different types of MS rather than concurrent MS components?
There are times i wish i had netter direct access to my neurologist. Im in the VA system it has happened several times that i have an issue that my referral is run out . I have to call my primary ,sometimes make an appointment that can be days or weeks out then get referral renewed then i can get to neurologist. Often i just wait for regular appointments and this happened weeks or months ago . Some of the testing he jas wanted is is in second or third time shooting for approval. It gets fun.
Dr Boster, can you evolve into another category the older you get? I am 71 now and was diagnosed with R& R when I was 38. Thank you for your updates !!!
Yes! I know of a few people who had their rr dx changed!
Great explanation, very useful video 👏🔥
Great topic . Thanks
spms, im secondary ms which gives epilepsy seizures, coma, etc summer time..
If you can do a video about secondary progressive it would be super nice, my neuro is a moron, been diagnose since 2021 and she don't know what my kind are and don't want to tell me. "It's too soon to tell... " Hum... Sorry but I disagree... I relapsed 3 times, now I slowly decline, around 5.5 and 6.5, no relapse just new problem... Bowel, bladder, bedroom... My body's half numb.... Im sure I "switch" to secondary progressive. Please Doc.B Explain to me!!!
I am also wondering the same thing, I have very similar symptoms to you, let’s hope we both get a definite answer soon x
Wish you were in the uk😢
I’m not entirely sure what a good day is supposed to feel like. Dx in January, prescribed copax… took me 6 months to save up enough money to begin the injections … of which I’m halfway through. People keep asking if the shots are working & I didn’t know what to tell them. I don’t think the treatment works like that?
So how did you tell that your loved one had MS My wife refuses to see a neurologist after over a year and she has many of these types of symptoms after a time with long COVID. 😢
Good morning Dr Boster..I love your bedside manner! Your videos are so informative and easy to understand. I'm having an MRI with contrast of my head and brain and a spinal MRI without.
About month ago I started experiencing numbness in my right arm and leg
I felt it gradually moving up my my arm and leg .
Then electric zingers in my arms started about 3 weeks ago.
My right foot is constantly bothersome ,especially at night, itchy at times, numb and a little painful.
I'm so tired, not sure if it's just from waking up from my foot bothering me and/or the night sweats.
I have gotten vertigo 4 times in past year. And on occasion double vision.
And constant hot flashes and night sweats...ALLLLL day everyday. Which I know could be construed as menopause, but they are constant.
Having said all that.... In your opinion, should I have my Dr give me order to have contrast for my spinal MRI too?
Gina, the contrast is helpful when the doctor reads the results, but if you have some allergy to it or something, they can still get, say, 80% of the info they need without it.
Hi I have a electricity feeling hitting my body. Do you know what this is?
Thank you Doc, well articulated.
what about sudden onset due to long covid leading to lesion in the brain and loss of function of upper and lower limbs within few days of tingling sensation ?
is it PPMS or relapsing ?
How do I go about getting a costing to see you
I know that it is not connected to the topic of the video. But I’ve been wondering, can HIV cure MS? It sounds stupid but there is some logic to it. HIV weakens your immune system, DMT suppresses it. So can HIV work as DMT? Are there any recorded cases when people had both HIV and MS, and their MS was in a long remission? I tried to google it and ask my neurologist, she looked at me, as if I was crazy
If you have a library card, you can access science journals and research databases. That's a good place to start.
Whatever kind I have makes it hard to say the right thing and answer questions the way I should.
What kind does my doctor have if they don't ask the right questions and listen when I'm talking?
thank you your video was very helpful, one thing that has confused me though - I was diagnosed with RRMS but have lesions in both brain and my spinal cord, I have had at least 3 relapses in the last 2 years previous to starting Kesimpta a year ago. I have had no relapses in the last year MRI stable but I do have worsening of symptoms and gradually and slowly my walking is getting worse, neuro has been talking about progression of old lesions but says I still have RRMS. Is it possible to also have PPMS or SPMS at the same time as RRMS? thank you 🙏
Hi. I have a question for just about anyone that might be going through something similar, I have PPMS. My self care has gone down to about a 3 on a scale on 1-10. My biggest issue is water. It hurts so bad to be in water. Washing my hair is the worst. It hurts and I can’t do it all but twice a month. Is that normal?
I was diagnosised with RRMS due to the fact that my disabilities come and go without medication (parathesia & left homonymous superior quadrantanopia) but now adays I can barely even move on the regular due to the back pain which seems to be focused on the two spots I have clusters on. Due to this constant pain im wondering if my RRMS has turned into SPMS, of course this is youtube and I'll be seeking out my neuro soon lol
Is a lumbar needednfor ms diagnosis?
Hello Dr. Boster, trust all is well, I am 53 yrs old and was diagnosed with RRMS in 2002. Started off with Copaxone, then switched to Tecfidera and had a bad experience. My neurologist switched me to Kesimpta for the past 3 years which is a 1 time per month dosage . I recently switched to an FDA approved drug called Briumvi which is 2 times per year infusion..I had my first infusion on May 5 2024 and will have my 2nd infusion in November. Sometimes I feel like I should have stayed with Kesimpta as some days feel worst than before I switched.Im wondering if I should give it a year and take my 2nd infusion before deciding to go back to Kesimpta. Please let me know your thoughts as my main concern is my balance right now. I use a kane but i really have to be careful as I do not want to end up in a wheel chair..You feel me..Thanks
Marc F.
At first I was diagnosed with RRMS and now my neurologist is saying it's aggressive relapsing ms. Haven't heard much about this kind. could you help me understand what this means.
Thanks for all the content. I was diagnosed with multi focal long segmented transverse myelitis about 2 years ago. I have yet to show any lesions on my brain but the lesion on the c spine has grown 3cm and I'm showing a "mccardle sign" - any insight or feedback? Thanks doc
I’ve had PPMS for 6 years now. My muscle function is worse every month. The last muscle I move will buy trigger finger. This is a horrible disease.
Can relapsing evolve into progressive?
Usually does, eventually. Then it's called SPMS.
What kind is it when you really feel like you never had an incident because me nothing strange has ever happened to me, but I have MS
I've been told I now have "simmering" MS. Diagnosed 1997.
Interesting. I'll have do some googling on "simmering". I feel like I could be in that boat. I've only had MS for 2 years.
No just give a like 👍 you just got a new Sub that you Sir!!
What is RRMS
Relapsing remitting multiple sclerosis
I have RR, which I refer to as pirate MS-you know, aargh. 😉 My neuro laughed when I told her.
I super love you have a cat tree...ie you're a cat person😺
Thank you😅❤
I woke up with complete numbness it my crotch and feet
🫵
thank you for making this video :) I have been in denial for 10 years, my seizure event, a new attack, made me believe it. He said my EDSS is 6.5 and there is no medication is available for 6.5 and higher - why is this. thanks again.