How Bad is Multiple Sclerosis? [Average Prognosis from MS EPIC UCSF Study]
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- čas přidán 6. 10. 2020
- How aggressive is MS? There is a tremendous amount of individual variability, but in this video, I review data from the MS EPIC study at University of California San Francisco showing the proportion of individuals who require a cane or develop secondary progressive MS after a given period of time.
The MS-EPIC study: pubmed.ncbi.nlm.nih.gov/27464...
Of those who start with relapsing MS, the proportion who require a cane to walk 100 meters (EDSS 6.0) :
4.7% at 10 years
16.2% at 20 years
over 50% at 40 years.
Transition to secondary progressive MS is
6.4% at 10 years
24.2% at 20 years
over 50% at 40 years.
Comment or ask questions below! I would be happy to answer!
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My book "Resilience in the Face of Multiple Sclerosis" on Amazon: www.amazon.com/dp/B07WP7H5LK
Dr. Brandon Beaber is a board-certified neurologist with subspecialty training in multiple sclerosis and other immunological diseases of the nervous system. He is a partner in the Southern California Permanente Medical Group and practices in Downey, California (South Los Angeles). He has several publications on MS epidemiology and has participated in clinical trials for MS therapeutics. You can follow him on twitter @Brandon_Beaber where he regularly posts about MS news and research.
Follow me on twitter: / brandon_beaber
Music: INNER GRACE - Copyright 2018 Wilton Vought
Source: Really Really Free Music
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The video material by Dr. Brandon Beaber is general educational material on health conditions and is not intended to be used by viewers to diagnose or treat any individual's medical condition. Specifically, this material is not a substitute for individualized diagnostic and treatment advice by a qualified medical/health practitioner, licensed in your jurisdiction, who has access to the relevant information available from diagnostic testing, medical interviews, and a physical examination. To the extent that Dr. Beaber endorses any lifestyle change, behavioral intervention, or supplements, the viewer should consult with a qualified healthcare professional to determine the safety and efficacy of the intervention in light of their individualized information. - Věda a technologie
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My wife, who supposedly had MS for over 20 years, died in 1994. Because I had complained about her treatment during her last month in hospital there was an autopsy ... followed by a thorough examination of her brain and spinal cord at two medical research establishments ... in Birmingham and Southampton. Their conclusion was that she did not have MS ... that she had a Primary angiocentric T-cell lymphoma ... and that the cause may have been a viral infection she and her mother had when she was 14 and had been holidaying in a log Cabin in the Rocky Mountains (the family were living in Canada at the time). The doctors in Canada did not identify the virus .. other than it was "probably something they had picked up from an animal." She was diagnosed with MS in the UK (after the family had moved back to Britain) when she was 18. I did some research online about MS and came across a statement that people with MS in the part of Canada where she had been living often displayed atypical symptoms ... the description of the symptoms were very similar to my wife's. Her name was Corinne Peters ... possibly medical researchers can track down the details of the investigation into her condition. I understand that some specialists believe that MS may have multiple causes. The low incidence of MS in South Africa suggests to me that the virus(es) that cause it does/do not exist there. During my time with my wife my attempts to report her atypical symptoms (suggesting that she had "some other condition") were ignored ... she "had MS" ... CT scans had "established this as a fact". At her inquest it was said that her lymphoma "could have been treated". Her original diagnosis was that she "either had MS" ... or "something else" ... a few years later another neurologist's opinion was that she definitely had MS. The investigation after she died was organised by her original neurologist ... who I had been in contact with prior to her death. The reason for my complaint about her treatment was that her consultant had attempted to pressure me into standing back and letting him engineer her death (which I think he did ... this was at a time when the subject of euthansia was being widely discussed). At one point he said to me: "I have a duty to my patients' souls ... if they deteriorate too much their souls have difficulty passing over." The reality was that at that time the hospital, and many other hospitals in Britain and elsewhere, was/were running a "cost cutting exercise" ... euthanasing people like my wife would save them money. The reason why my wife ended up in hospital was because our GP had seen me in town, realised my wife was alone in the house, found the door unlocked and had entered and dispatched her to hospital ... by the time I got there she was "not conscious". Thankfully things have changed ... significantly since back then. The world came close to a "medical holocaust" of the chronically sick and the elderly. The reason ... I believe ... was that medical science was advancing at a rapid rate and there was concern that vast sums of money would be "wssted" on keeping such people alive ... money that could be better used elsewhere. Hopefully we'll not go down that path again. People with MS were a primary target of those with such views. On May 9th 1994 the House of Lords discussed 'The Lords Select Committee Report On Medical Ethics' ... the Media was calling it the "Euthanasia Bill" ... and many were expecting euthanasia to be approved. Much to their annoyance the Lords came out totally against any form of euthanasia ... because of, so they said: "The appalling attitude of a significant section of the population."
Yeah, "lucky" me- spinal cord damage, weakness of arms, legs and bladder and gut issues (but that one is harder to tell, as I also got IBS (irritable gut syndrome), which often accompanies ADHD). So far I can still walk 700-800m. In 2020-2021 it was 5-6km, in 2022 dropped to around 1-2km, yet when an emergency happened, I was able to walk 6,5km on July 2022.
It's not like a cane would be useful to me - most of time I got difficulty to lift up my left leg, seems like it would make more sense to attach a string to my left leg like a muppet. 🤣
On the bright side, when first crisis happened (not recognised as MS at that point) I was almost 40, and issues with walking started, when I was 43, so for most of my life I was not crippled.
i never thought id meet my twin. I got all the issues u said in the first sentence but im 23. You had me laughin my ass off on the thought u had about the cane. I felt the exact same at first, it actually does help though when you trip on your toes not lifting the foot high enough. You have to swing it out in a C-shape. cane does me justice, walker for when its bad for me
Man, your analysis is always so good. Really appreciate it. Thank you very much!
Thanks Spencer :)
Well I'm glad my diagnosis of MS was caught early on (at the age of 19 and 1 month before I turned 20) haha. From what you're saying, if I had gotten it later, it might have been way worse for me. I have high hopes for any future research in treating MS and I hope that I don't have to use a cane once I'm in my 30's. Love watching your videos as they are always so informative!
Using a can isn't so bad. Once they start telling you that you need a walker - OUCH!!
So how is it so far?
Thank you Dr for tackling this topic. Seems like Dr's in the US don't like the word prognosis or answering questions about the disease . They know lots of information but tend to be more inclined towards the word idiopathic . I mean avoiding saying that yiu might need a cane or you will be disabled unfortunately . The need to know is very important for Ms patients since they probably were diagnosed at a young age and need to have a normal life ( or that what they thought ) . Pursuing a career in medicine fir example seems illogical knowing that you need hand skills , thinking, sharp mind and long hours. Driving as well is not a good idea ( trucker ) . So it is important to have some sort of prediction and insight into what is possible and what is not . Thanks dr for this video please talk more about prognosis .
My husband is 69 & he has just been diagnosed with MS! We are just learning about MS. Please enlighten us about MS at a later stage in life .
Thanks for the video Dr. Beaber. Do you know of any studies that look at how fatigue and cog fog affects on people with MS? The EDSS scale doesn’t measure this and it seems like most people need to leave work because of fatigue and cog fog, not because they need a cane or wheelchair.
There are a lot of studies on these symptoms, and you are right that people with MS often report fatigue and cognitive problems as their worst symptoms, even if they are invisible to an external observer. The EDSS has its limitations. I have a video looking at diets which have been studied for MS fatigue: czcams.com/video/Xt28wVH7_38/video.html I may do a more comprehensive video on this in the future.
Same here rrms for 25 yrs am 50 now- have long-term cog probs cant drive or work anymore- other than that i walk my dogs, eat ok, and try to stay positive- so far so good fingers are crossed ☺
@@lorrainejohnson829 there are so many in your position. The cog fog and fatigue seem to be as debilitating as the physical losses.
I love how I'm here waiting to know when I'll have to buy a cane and you say: "Let's have some fun!"😂 Just kidding, thanks for the info! I'm ready for the worst but I know everyone is different, my mom had and is having a very different progression of the disease compared to me (in some ways better), and so are all the people I know with MS. There really is a huge variability from person to person, but it's useful to have an idea of what could happen.
:) I guess the catch phrase has become a habit.
Never went to a doctor often. Then an episode of very odd sensations in foot and numbness in hand lasting 2 eels sent me to urgent care. Astute doc found I couldn’t spell “world” backwards. Said if she wasn’t looking at me she’d say I’d had a stroke. That was over 30 years ago. I’m just occasionally using a cane. Resist could be my middle name I guess.
@@MsCmeehan thats great! Have you done mris?
My gf has ms . She loves weed . I have AS I love morphine . We grow bud has your mom tried weed for symptoms ? My gf just smoked a joint 11 am west coast .10am Vegas time
I wish I was given this information at diagnosis. I feel like I was told or given the impression that it gets really severe for most people and requires wheelchairs and such
Thank you for the video Dr B B. I've been diagnosed for a year and a half now and I've been using a cane pretty much from the start but I started with a walker. I am on Tysabri every 28 days. I am doing better but not at the pace that I would like to be at. Honestly the only thing that is bad with my MS is my legs hurting that affects my walking an my balance. Having osteoarthritis in my knees does not help and I'm only 40 years old
Thanks for sharing. I wish you the best of luck with your recovery.
Thanks ... I think I am Transitioning from RRMS to SPMS (I’m in uk btw). I was dx in 1996 so no DMT initially and then took rebif for 10 years or so. Really interesting video and I know it is unpredictable and unique .. e.g. I had a baby 10 years after dx ... I had a salivary malignancy 18 years after dx ... all linked to relapses. Not everyone encounters these. I am hoping my neuro will agree to benefits of Ocrevus for me when I next see him in clinic. Slowing the progression is my main focus now ... I aim to achieve ketosis, time restricted eating, daily cold showering plus keeping as healthy as possible. It’s all a learning game.
Looking forward to watching more.
Hi Dr Beaber! Your information filled CZcams‘s are immensely helpful and so appreciated, thank you! Wondering if you might be able to create + post a CZcams specific to people diagnosed with MS in their 60s? Interestingly,, I was diagnosed with parsplanitis at age 29, recall having occasional unusual vibration sensations when I turned my head in my 30s and 40s + was diagnosed w/ MS at age 60.
Thanks for the suggestion. There isn't a strong association between pars planitis/uveitis and MS but I have a few patients with both of these conditions.
Thankyou for these videos Dr. It is very much appreciated.
You're very welcome. I'm glad you enjoyed it.
Thank you so much for speaking on this topic Dr. Beaber! This is my favorite video yet! Would you be able to do this same video but on PPMS?
Thanks for the suggestion Cheryl. I will make a note of this. If you have access to the study, you can open the article and go to figure 1, and it shows some data on progressive MS: onlinelibrary.wiley.com/doi/10.1002/ana.24747
i have PPMS.
Thank you, this information lacks when I speak to my M.S. neurologists. Probably because they don't want to get my hopes up, or alternatively push me down into depression.
I'm glad you got something out of the video Sokwe. Like I said in the video, this information doesn't mean much for an individual person with MS, but it's nice to have a general sense.
This is important information to have for general life planning.
Another idea that's not been covered (by anyone): internal tremors.
My RRMS already 20 years old, no dmts edss 3.5. I still run, but every year I experience 3-4 exacerbations per year. But I don't treat them with steroids. I recover quickly without them.
Thanks for sharing. That is a very high rate of relapses, but it is great that you recover.
Until you suddenly don’t recover ... been there..
with older age or spms you can't recover...hsct is your best hope to stop progression..look into it.
Why do people who take dmt medications always end up in a wheel chair. My good friend who is in a wheel chair regrets taking dmt medications.So why does that happen??
Yes..it's cruel to give dmt and imply they stop progression. But they don't stop ms brain atrophy..they only stop relapses.
Hsct is only thing that gives normal .2 brain atrophy search "normal brain atrophy after hsct for ms" watch "youtube 60 minutes Australia hsct ms" also "beaber smoldering ms youtube"
Thank you for the content you’re sharing!!!🙏🏻💫👏🏼
I'm glad you enjoyed it :)
thank you, it was interesting. I guess it does differ during first ten years :) someone takes it after a couple of years, i started using a cane after about 7-8 years. Mostly I and my friends took it after 5.5 - 6 EDSS. Not just because of weakness in legs, but also due to balance issues (my case).
Great presentation as always, what would you consider a lot of attacks in the beginning?
From modern clinical trials, the annualized relapse rate (average relapses per person per year) is around 0.4 (or 1 relapse per 2.5 years), so if someone has 3 relapses in a year for instance, that would be a lot.
Dr. Brandon Beaber ok thank you 🙏🏼
Dr. Brandon Beaber I had 2 one being subtle tingling feeling in my leg to the next attack being full blown vertigo taste change and double vision for my second attack, once I finally got to my neurologist I had already suffered about 4 attacks luckily orcrevus has helped me and I have some residual damage from those attacks like the tip of my tongue is slightly weird like a tight feeling, my leg gets a vibration feeling and on the odd day I feel light headed when I go from a standing position to laying down suddenly for example on a bench press. I sure hope one day they can reverse some damage but I also understand that it could be a lot worse considering how many attacks I had and I hope the most aggressive attacks are behind me one can only hope.
Thank you for clarity.
Does this assume that people were diagnosed at disease onset? For example I had symptoms in 2009 and has a clean MRI and LP but was just diagnosed this July after additional new symptoms and now have lesions on MRI.
The data which I showed were based on "disease onset" (implied by symptom onset) rather than the time of diagnosis.
I suppose the study you’re referring to will need some updating with the advent of high efficiency DMTs?
I was wondering if this autoimmune condition actually affects your emotional state before symptoms start? I think symptoms can be so vague that they are often so overlooked,so by the time you have a significant relapse damage can be permanent. I think one significant relapse after the age of 49yrs of age should warrant DMT meds? It's an insidious disease so vague symptoms should be taken seriously by GPs.
Hello and thank u for shearing MS information. I found it useful and interesting
Hi! Do you have any information about how MS relates to thyroid conditions? Thank you!
they are both EBV driven autoimmune diseases...many people have both.
Love your channel. Im currently studying MS for my master's and your channel is the most comprehensive overview of the illness i could find online.
Your dedication to MS is admirable, but its probably also why your channel will not grow in the long term, cause it's too specific of a topic for a youtube audience. But maybe im thinking too much about business here as opposed to science, it all depends on what you strive to do but i think if you were to extend your channel to other illnesses or perhaps even other science topics you could really grow an audience.
Will be interesting to see how our DMTs affect these stats... In another 30 years though right 😀
Indeed
Why aren't you sure about the positive effect of DMDs used nowadays and the prognosis?
I’m not yet diagnosed with ms, but have inflammation on my brain and spinal cord, they found bands in my lumbar puncture. I’m hoping for diagnosis in September.
I’ve been housebound for the past two years and before starting the oms diet I was bed ridden and using a wheel chair, unable to use hands and feet properly and seeing double.
I am now walking in the house but very weak, dizzy and have no energy. I’m hoping when on medication I’ll have more energy to exercise as my left leg muscle as completely wasted away after surgery (knee operation before symptoms started )
Thank you for sharing. Any update? ❤
@@kdlee3316 I’m now diagnosed with ms. Still on the oms diet. And I’ve starting taking cannabis syrup with has helped a lot I can move a lot better and have even more energy. I still have a long way to go as I’m still very weak, but much happier as I can get around the house alot better. I’m now going to gym once a week with a trainer and I’m hoping I can try swimming when a little stronger. I’m on a medication called baclofen which isn’t a ms spefic drug. It’s usually for stroke patients. It helps relax the muscles. I’m hoping for ms meditation soon but not holding my breath as everything seems to take along time. Hope you are well ❤️
@@paulkeelan7465 thanks for update. So glad you can move and see better. The pool sounds like a great idea❤️
Still working with this
Hello
I have question please
How it’s possible to have ms and vasculitis
I am a male (29) and was just diagnosed today with MS. What, in your opinion, are the best drugs/ treatments to take to halt MS in its tracks / slow it down? Feeling pretty depressed about it - thank you for the statistics though - I know they are averaged but it gives me a sense of what I can expect. Cheers :)
I can't give you personal advice, but I have a video looking at various head-to-head treatment trials comparing efficacy of different medications-czcams.com/video/L7WObDeq_Nc/video.html I wish you the best of luck.
You want to get down to normal brain atrophy of .2 because Ms atrophy is .3-1.3% a year... search
"Normal brain atrophy after hsct for MS" and read everything.
@@DrBrandonBeaber Thank you for your reply Dr. Brandon!
@@marydascalos9673 mhmm HSCT is pretty scorched earth though - potentially putting my life on the line while I am still young or dealing with lifelong complications. If I were in my 40s or 50s I would definitely consider it but I am not even 30 yet :(
.
:( Wow..you have a lot to learn..hsct has only .2 mortality..it works best early in disease..it prevents disability..it does not repair it once you have disability. So you have it backwards. Who told you that..???
Thanks, Doc - Great video! It will be interesting to see how/if the stats landscape changes in the future when the current ~20-30 year old newly diagnosed patients who start out on modern DMTs eventually age into that 20-, 30-, 40-years-since-diagnosis bracket.
Side note: Apologies if you've already touched on something like this and I missed it, but I'd be very interested in a video (or portion of a video) on how the number and/or locations of lesions does or does not impact a patient's prognosis. Or average # of lesions on an early MRI. Just something I've always been curious about and would enjoy your take on.
I am hopeful that the prognosis of MS will continue to improve, especially with early initiation of high-efficacy disease modifying therapy and other advances. The phenomenon you are describing in the side note is known as "clinicoradiologic dissociation." It has long been known that T2 lesion volume does not correlate well with disability. There are multiple reasons for this. One is that many lesions have associated remyelination, particularly if they are T2 bright but normal on T1 sequences, so the tissue may appear abnormal but function well. Also, lesions in the spinal cord (rather than the brain) correlate more with walking problems. Thirdly, we know that a lot of MS is invisible on conventional MRI including cortical lesions, microglia in "normal appearing white matter," and mitochondrial failure in the individual neurons.
@@DrBrandonBeaber that is what I was looking for! Thank you for clearification. I do have a very mild ms with T2 hyperintense tesions that are not enhancing on T1.
Hi doc! Could you make a video about how MS impacts super young onset patients? Let’s say range 10-15. I fall in that category and know a lot of people who fall into this category. The way Ms impacts us and progresses for us doesn’t seem like the way it impacts the older patients. From my experiences and from what things other patients told me, we seem to progress faster and have a more aggressive form. Also, what’s your opinion on the current Ms types? Do you think they are fine the way they’re or would you like them to evolve a little. Eg: My Ms would match the definition of progressive relapsing more so than the others. There is all this evidence present showing progressive nature to be true for all Ms patients Yet relapsing remitting category doesn’t really talk much about it and the neuros don’t really see relapsing remitting type as a progressive Ms. Also, I saw your video about brain shrinkage. If you don’t mind me asking, what do you think is the cause of that? And is that something which should be addressed. Sorry for a super long comment. Promise one more and I’m done. I recently decided to monitor my heart and see my heart variability and the nervous system aspect of my hearts function in more detail. Prior to a relapse ( rn I’m having one) my scores and numbers were amazing. As soon as my relapse started, my numbers dropped significantly. I have always wondered if Ms impacts other organs. I mean, it’s the nervous system, so would these lesions not cause problems for every day to day function and for other organs? Is so, how bad could this be? What would the implications of this be? Again, apologies for the long comment and thank you so much for making these videos. You are one of my favorite people on earth, and these videos are thought provoking and amazing. I learnt more from 10 of your videos than I learnt from all my time with my neuro and so on.
God bless you! Have a beautiful day/night.
Thank you… thank you thank you thank you.
You're very welcome
When you are diagnosing someone with MS is it quite clear what type of MS they have ie. RRMS or PPMS? Is it based on symptoms and history? Thanks
Usually it is clear. For primary progressive MS, the history suggests a prolonged insidious worsening of symptoms over months and years. For RRMS, distinct relapses are described, usually evolving over days or weeks, peaking, and then possibly improving. There are some cases where it is ambiguous.
@@DrBrandonBeaber thank you
I needed a cane right after being diagnosed with RRMS at the age of 27 and I’m 33 now
How are you doing ?
Kind of off topic but my friend was in the initial ms dmt drug trials so she's been on dmts for 30 years. After about 10 years she really went down hill physically but she is very active but has used a Rollator for years. Left leg drags. VWhy do you think some decline so much physically despite the dmts? She was rrms initially. First symptom (exacerbation) around age 17. Now she's 50.
Unfortunately, many people with MS do eventually develop secondary progression at some point despite disease modifying therapy. There is a large range of outcomes, and some people are unlucky enough to have severe disease. Also, the DMTs used 30 years ago were primarily low-efficacy agents such as glatiramer and interferons , and many people have relapses and make new MRI lesions despite taking these drugs. I am hopeful that early initiation of high-efficacy disease modifying therapy will make a big difference 30 years later for younger people being diagnosed today.
@@DrBrandonBeaber Very unlikely as the DMT's don't influence ppms they are unlikely to influence progression in rrms.
Ok, that's not bad.
I have TMS I got it at 14 now I’m 24 young lady. I’ll REALLY REALLY like to be your friend if you’ll like. I had DR. E Waubant from UCSF as my MS doctor she’s VERY VERY smart
I want to appreciate Dr Madida on CZcams for treating my Dad of his Multiple sclerosis with their natural meds🎉.🎉🎉
That is me😢
Question .My gf has ms . Can she spread it to me .? Spread lol .I give her kesempta .we both think it helps . $ thank you for the info Dr
There is strong evidence that MS is not contagious. Multiple studies on spouses of people with MS show no increased risk.
"Let's have some fun." 👎
My thoughts exactly were....WTF!
Can you please explain Doctor what you meant by saying...."let's have some fun" !!!??????
Have only just found your channel.....I won't be subscribing!
@@angiemcdonald4248 It's fun for him because he's not the one suffering.
No mask, Dr. Beaber??? Tut, tut...
What's the root cause of ms? There is a root cause for everything. The autonomic nervous system and central nervous system is affected. The cause of my nuerological immune suppression disease is lyme and mold and my autonomic and central nervous system is affected. Ms is a symptom(s) and a secondary disease which does have a cause(s). But conv medicine doesn't look for pathogen disease causes. This is Healthcare and should not be playing games with human Lives.
I do not agree that lyme disease is the cause of MS generally speaking, and I comment about this in the following video: czcams.com/video/Ak04PIcxbTg/video.html In rare cases, neurological manifestations of lyme disease can mimic and be misdiagnosed as MS. I speculate about the potential causes of MS in this video: czcams.com/video/qXmMFusqons/video.html