I think many people with MS are very well informed about their disease. I would go so far as to say they know more about MS than many GPs do. I have had more than 1 neurologist compliment me on my knowledge of MS, and I am just the average layperson with no advanced education greater than an undergraduate degree.

@andrewreisinger6860

2 ай бұрын

@orbitingdecay6797 Exactly! We our experts in experiencing our symptoms. 💛

I love it ! Throwing out oldfashioned paradigms is necessary in each field on a regular basis. Clean it up and get clear.

Thank you so much for summarising the evidence on this! I'd heard about the single disease model before and I thought it made sense, but I didn't know the data so strongly supported it

Excellent video with great charts, analysis and summary. I wish more doctors would provide such details and supporting details. Keep it up.

Thank you for this. Broadening the pool of test subjects makes total sense. In the UK the not very meaningful subtypes mean that while Ocrevus can be prescribed for pwRRMS and PPMS, it is forbidden to prescribe it to pwSPMS. This seems nuts, but because the original studies were restricted to the artificial distinctions, those rules won't change because it's too expensive to run fresh trials.

@DrBrandonBeaber

Жыл бұрын

I agree with you.

This is so interesting! I hope discussion around this expands.

Such a great review of what a neurologist is seeing when working toward diagnosing the different types of MS!

I like all your videos including this one that is more technical. Really appreciated this one! The new study that came out a few weeks ago states they are different diseases. I’m fearful the insurance companies can use this to their advantage and start denying medications. So thankful for your interest in people suffering from MS!❤

I really appreciate this style of video. It’s information presented in a way that increases my understanding. No where else is information that is research based presented with so much clarity. I actually think your mix of video presentations strikes a perfect balance. Thank you!

Great info! Very comforting to know this.

To answer your question at the end: I LOVED this more research break down video. This was exactly what I'm looking for and would love more videos that are similar.

@MrMikk532

Жыл бұрын

A video I'd like to see: something addressing vision tests to diagnose optic neuritis. When I went to the doctor when seeking diagnosis due to optic neuritis, I got dismissed as I "didn't have any visual defects" despite not being able to see and having to move my eyes around (central vision) to try to make out the letters. It extended how long it took to get diagnosed. I later heard that a low contrast visual acuity test should have been used. Would love to hear your thoughts on these assessments that one would have prior to MRIs being ordered.

Theoretical information is absolutely useful. We simply do not know ex ante as patients when this type of information might affect our choice of medicine. And not all neurologists are always aware of all the research out there so even their judgement might benefit from a discussion with an educated patient. Thanks a lot. I am looking forward to your next video!

I do love this format of videos. For myself I love learning more about each subtypes. In my experiences with meeting other people online whom have MS, I personally never saw a huge differences between those with SPMS or PPMS. What I've noticed this difference in disabilities. Some who have secondary cannot move from the waist down, one friend is a quadriplegic (in less than 10 years from diagnosis), and another friend whom had MS since 19 now some is doing great does use a walker now. Often those I meet with PPMS Just have a lot of neuropathy pain, feet pain swelling and are older. That's been what I've noticed so far in my MS circles/ MS family. Myself I was diagnosed with RRMS 2021, however in my first MRI they found an eight ball size brain tumor. My MS neurologist said that this is a huge evidence of a MS:my brain tumor. I come to understand that it's a rare type of MS, tumefactive, often shows by larger lesions and or a brain tumor, and then as time goes on it moves to RRMS. Also seems the outcome is usually better for those like myself. I would love to hear your thoughts about this as well. (I've been told even Have to brain tumor surgery, My MS disabilities have increased, that having the brain tumor my outcome for future disabilities is less.)

@debraindxb

Жыл бұрын

Your friend who has had MS since they were 19... How much time has passed since diagnosis? I'm assuming "19" refers to age 19, not 2019. I ask because my daughter had her presenting symptom at age 18, 1 month, a lesion a year later and diagnosed with MS at age 19. She will be 21 in a few days and doing great but I am often curious to know about "long haulers" who began their MS journey young. Thanks.

@mary-vy3mo

Жыл бұрын

@@debraindxb your daughter has too much runway in front of her to avoid disability...about 80% of rr become spms. Hsct is best thing to stop progression. Watch "60 minutes Australia Ms KZread"

@missbee980

Жыл бұрын

Wondering if MS is correlated with tumor necrosis factor which can be increased by the allostatic load due to stress.

@MysticalDreamFire

Жыл бұрын

@@debraindxb I'm newly diagnosed but because of the size of brain tumor they said I've probably had MS since ages 15-20. My friend who has MS since 19 is 50 now. MS is a snowflake disease so you never know.

@MysticalDreamFire

Жыл бұрын

@@missbee980 they told me my brain tumor is MS, all related

I was not dx until 30 years after my first MS symptoms. I can literally trace my progression through RRMS and have now been labeled as SPMS. I truly believe progressive MS is all the same. Thank you for this video. Finally, a doctor that is willing to say it out loud.

@missbee980

Жыл бұрын

what were your RRMS relapses like?

@jlcmarietta

Жыл бұрын

Periods where I could barely walk, two bouts of optic neuritis (the second brought my dx), balance issues, falling, and I was always severely fatigued.

@mardaripaul5382

2 ай бұрын

@@jlcmarietta What are your symptoms now?

@jlcmarietta

2 ай бұрын

@@mardaripaul5382 spacisity, balance issues, and significant cognitive deficits. I am completely blind in my left eye from Optic Neuritis. It is very apparent that I am slowly progressing despite the Tysabri. My neuro believes that without it, I would be having relapses. Dx is active SPMS.

I love this type of technical video. Thanks so much. I especially like that you discuss pertinent studies to support your premises which helps convince me of the validity of your arguments. I was most interested in this topic as I am recently being considered for a change in diagnosis from RRMS to SPMS. My mother had PPMS. At age 61, I am doing very well while my mother died at this age from MS without any treatment options. The more information I can get about these subtypes, the better.

I love this type of video, Dr B.!

@DrBrandonBeaber

Жыл бұрын

Thanks. it's getting a better reception than I would have guessed.

I love this kind of informative video. Thank you!

Good video Dr. B. I think this information may help patients identify the stage of their disease.

I have always thought it is the same disease, just depends what stag you are diagnosed. I had many unexplained problems that would unexpectedly resolve, for 15-20 years before diagnosis. Quickly told that I was SPMS. I really enjoy your mix of video types. Suggestion for future video would be functional best practices

I had this exact conversation with my neurologist how he said the different subtypes are arbitrary and how it's all one disease. He even shared that the guy who created the distinctions has had keynote talks about how he no longer believes in categorizing it as a separate disease.

I liked this kind of video, it's very informative! Thank you

Thanks for this video, very informative and I actually find these types of videos most useful bc not many doctors are willing to provide such detailed scientific information yet in understandable way. Regarding SPMS/PPMS, I heard this opinion quite a few times in recent years and IMO makes sense. I don't think there should be so much distinction between MS subtypes in clinical practice considering progression is part of all subtypes (even RRMS just in milder form). Next video suggestion - CD20s higher vs lower dosing, does it matter?

“Survival from birth is the same.” Mind blown! Every thing I have seen or read has said PPMS is associated with earlier death. Thanks for sharing Dr. Beaber.

@DrBrandonBeaber

Жыл бұрын

It's easy to lie with statistics :)

@barbaradascalos4411

Жыл бұрын

No..ppms is just associated with more disability...Annette Funnicelo was dx at 45 and lived for 25 years till 70 but in the end she could not see..speak..eat.. or move...so much for benign ms.....:( see "wheelchair kamikaze ms ugly truth"

@RobdeKlerk-qg6lc

7 ай бұрын

It's not true ?

I do appreciate both types of vídeos. Both types ade very educational. Thank you

This video was informative and praise-worthy! You addressed a wide variety of MS questions; in fact this is the best information I’ve seen in a long while. The more evidence-based information you can feed to us, the better. I agree that more clinical trials need to happen. For future videos I would like to learn more about brain shrinkage and any mitigation that is available. Great video!

@barbaradascalos4411

Жыл бұрын

hsct is only therapy that results in normal brain atrophy of .2 see "normal brain atrophy after hsct for ms" see "ms brain atrophy"

@mary-vy3mo

Жыл бұрын

See "normal brain atrophy after hsct for Ms" DMT drugs Will not do this...why they only slow and do not stop Ms Progression.

I love your videos! Keep em coming! What do you think of the Tisch, NYC, finding about the MS-inducing antibodies ONLY present in PPMS?

I am edss 7 and I've only been diagnosed with multiple sclerosis primary Progressive for the last 2 years so it's very quick I love the leaking pool model by dr. Briar

Thanks doc!

The video was very informative 👍🏾

Thanks for this terrific video. There is so much research ongoing internationally, but how the neurology community reaches a consensus on new treatments /philosophies is the crux of the problem. What will it take for the community to 'glom on' to the EBV theory of MS as the primary driver? I am reminded of the resistance to accept the discovery of helicobacter as the cause of ulcers. I think it took about 5-10 years for antibiotic treatment to be accepted method of ulcer treatment. I'm 74 and have had MS for 16-17 years. I am progressive (EDSS of 6) and am losing hope of ever having the opportunity to get a DMT that addresses the EBV theory. Yet there is so much evidence for this. All us MSers want the progression to STOP! New MRI lesions are just a compass, but tells you nothing of the difficulty/disability progression down the road.

@DrBrandonBeaber

Жыл бұрын

You may appreciate this video on ATA-188 which is an anti-EBV therapy: kzread.info/dash/bejne/Y6ma3K9_nJvfm9o.html

great videos Dr Beaber can you do one on PoNS devices

I was quite disabled from onset, PPMS, there were no DMD’s then to treat it. I was progressing steadily, I had significant brain atrophy at onset, constant tremors, severe fatigue, and spasticity that bent my legs so I cloud not straighten them, mobility severely challenged, and more. Followed Dr Wahls before she wrote her Paleo Principle book, after reading her first book, Minding My Mitochondria, and had noticeable improvements in symptoms and disability following a Paleo Protocol. Background, I had a childhood spine injury which led to chronic back, disc disease, multiple disc injuries, and lifelong challenges. I worked, pursued my career, was very active, volunteered, albeit sometimes I had temporary bouts of disability, right sided weakness, a limp at times, disc related, multiple disc injuries cervical, thoracic, lumbar. Looking back it appears some symptoms believed related to disc injuries masked a earlier PPPMS diagnosis onset. Turns out I had another disc injury and PPMS concurrently. Appears clinically that SPMS and PPMS are parallel symptomology as this lecture suggests, makes sense. Still, those of us with PPMS did not get the RRMS relapse windows before onset of more severe disability so in that way it’s quite different.

Great video ! I am clear now that I have PPMS and I am taking the right medication UCREVUS

Terrific discussion. Informative and thoughtful. DF

Great! Thanks for asking. I did get a dog in anticipation of my diagnosis and that kept me active & I stopped using the trekking poles my physiotherapist recommended (because I was losing confidence with my walking). I do need to do more weight lifting & practice my balance. Probably stopping my high stress job was the best modification of all 😊

I like this type of video to understand my PPMS.

Thank you for your take on this info-I was diagnosed with ppms at 48yo but I’ve thought I might have had it much earlier but Dr.’s never did until I had a major episode. Now I know that my tx doesn’t need to be any different, I’m doing great btw😊

@DrBrandonBeaber

Жыл бұрын

Imagine the arbitrariness in trying to determine whether a vague symptom you had 5 years ago was a multiple sclerosis relapse. This is an impossible game.

@RobdeKlerk-qg6lc

7 ай бұрын

How are you doing ?

thank you Dr Beaber, off topic question, is there any contraindication between dmt s and anaesthesia?

Thanks for sharing Dr. Beaber! really interesting, but that's always true when I watch your videos😅

@DrBrandonBeaber

Жыл бұрын

Thanks

Love the theoretical videos! My doc believes I have ppms but has to label me as spms to get the medication she believes best for me. And as far as spms and ppms...I think they are both , same but different. Very hard distinction. Love your videos! Thank you Dr. Beaber

@DrBrandonBeaber

Жыл бұрын

Thanks Jodi. I have heard of doctors doing this (changing multiple sclerosis subtypes) to appease insurance companies.

4 your support 🙂

i can't remember where i heard it, but i watched a video from a neurologist that mentioned the subtypes of MS were originally distinguished purely to reduce the population size so that early treatment options could get approved for red tape reasons. if that's the case, now that we have all these approved DMTs, for most patients it may be doing us a disservice to continue with the discrete categories categories in favor of letting individual patients describe their symptoms and stages of progression. all that said, i wonder about the impact on rare presentations of MS, and if eliminating categories might delay diagnosis and treatment. as well as the issue with there being only one FDA approved drug for PPMS, currently.

This is very convincing! The marketing seems to be assigning a specific catalog of DMT's with arbitrary distinctions, and they have even manipulated the FDA to sew up corners of the market. I've waited for such a comparison of PPMS/RRMS compared by genetics, MRI, autopsy, disease progression etc. Typical flawless, honest and detailing by Dr. Beaber, who clearly lives by the Hippocratic Oath.

If SP MS and PP MS are the same (and PPMS can develop yearlier but without symptoms)why some people are diagnosed with PP MS at the age of 19? It would mean that their symptoms have been developing for many years from the day when they were infected by EBV (so during their childhool). I think all types of MS are the same disease. There is one trick- MS affects people differently. In RR MS it can activate bigger number of b cells and small number of microglia. In PP MS it can activate microglia and macrophages (thats why drugs used in RR MS are not effective in PP MS). But anyway we should focus more on developinh effective EBV drugs in MS so then maybe we will cure all types of MS. And maybe we will have only one drug for MS not 20 DMT.

@TankoxD

Жыл бұрын

I know a person who acquired MS in the age of 6 and by 20 he was severely disabled (he also have a KZread channel). He had so-called RRMS. It's very rarely but it's possible. The same goes for PPMS but even more rarely since PPMS is only 10 percent.

@mary-vy3mo

Жыл бұрын

What is their KZread channel..?

Good later morning to you Dr Brandon, I was diagnosed back in 2017 with relapsing-remitting at the age of almost 51 but my symptoms started ever so minutely back in 2012 and 13 so that tells me I've had it a heck of a lot longer than 2017. Anyway as of two years ago I'm now considered secondary progressive but I think it was sooner than later and my neurology team just didn't want to tell me or they weren't sure. MS it's definitely a baffling disease dr. Brandon. You said in past videos at Syracuse is one of the most highly prevalent places for Ms in the US. Very interesting cuz my new physical therapist said that although Syracuse has good neurologist he said there is really none in Syracuse that specialize in Ms and that Rochester and the Cleveland clinic are the better bets for that and that's pretty sad knowing how many people have MS here. We don't even have the MS society here anymore instead we have MS resources instead. Thank you again for the video.

@sarahdotcom

Жыл бұрын

I think doctors are reluctant to diagnose progressive MS because it reduces treatment options

@roberture5903

Жыл бұрын

​@@sarahdotcom yes I think you're very right about that Sarah, I'm on tysabri right now and my next step would be ocrevus. I'm 56 so I'm probably too old for stem cells but hey I'm still walking so it's all good.

@barbaradascalos4411

Жыл бұрын

No..if you are still walking stem cells or hsct is really your best chance to stop progression /improve...Tysabri and Ocrevus can not stop progressive disease at all.

@roberture5903

Жыл бұрын

​@@barbaradascalos4411 thank you Barbara oh, I just look back on this video and really looked at your comment and that sounds great but my problem is being able to afford stem cell treatment and if I can go somewhere in the US to do it also because it this time I don't have a passport. But thank you for thank you for your comment because I'm hearing this more and more all the time. I'm sorry for being late I'm commenting and I hope you had an awesome Easter

@barbaradascalos4411

Жыл бұрын

Ucirvine is starting to do hsct on insurance.. cheapest foreign clinic is India at 30,000 see "ucirvine ms reboot"

Do you have a video regarding parasite cleanses with MS? Harmful or beneficial?

I had RRMS since 2017 (not diagnosed yet) and it went to SPMS late in 2019 (still not diagnosed) and got diagnosed in 2020, initially with PPMS, which has been corrected. I'm 29 now and nearly bedridden which seems abnormally fast for progression...

@aditya50499

Жыл бұрын

Had my symptom onset in 2011 at the age of 17, diagnosed in 2015 as RRMS (though I strongly feel that I had already transitioned to SPMS by the time. The diagnosis was later changed to SPMS in 2018 and my then neurologist considers SPMS and PPMS as one type. The progression of MS has been really rapid in my case too making me severely disabled and my bladder really very weak.

@barbaradascalos4411

Жыл бұрын

This early spms always has fast progression since you get PIRA worsening and RAW worsening at the same time... see "how ms patients acquire disability" If you have big/numerous active lesions then hsct can work to shut off the active disease.

I've been on many MS drugs. Copaxone was like putting a bandaid on a gaping wound. Currently on Ocrevus and I'm still getting worse, just a bit slower.

new research has now said that PPMS is a disase on its own. Rare, so nothing to do with RRMS etc. it was on the news last week.

@DrBrandonBeaber

Жыл бұрын

I do not agree with this, and I think my video makes it very clear why. If you have a source to this claim, I would be happy to take a look at it.

@58209

Жыл бұрын

seconding the desire for the source of this research you're referencing. i'd like to learn more about it.

@DrBrandonBeaber

Жыл бұрын

@@58209 Please see the notes below the video with links.

@mary-vy3mo

Жыл бұрын

@@DrBrandonBeaber your video is just a video...it is not Original published research.. Dr. Sadiq at Tisch published his research in Brain...his lab Used the csf of ppms patients To induce a ppms mouse model...they also used CSF wash out to lessen disease. See "ppms it's own disorder Ms news today" This is new.. research which is why it is published in Brain.. You video is educational only...not new research.

Thanks for this informative video. You make a persuasive argument that PPMS and SPMS are the same disease. I was diagnosed with benign MS 33 years ago at 34 and SPMS 10 years after my initial diagnosis. My initial symptoms never remitted. I am also convinced that I had MS lesions long before my initial diagnosis. I had ignored what I now know was was Lhermitte's syndrome some 7 years before my diagnosis. Question- has there been research on location of lesions and progression? My lesions are in my spine. I no longer can walk and have been using motorized WC for 3 years. I know folks who had lesions in their brains causing visual and speech deficits and facial pain. Their symptoms were severe at the time but they have been symptom free for two decades. They haven't been on DMT for many years. Spinal lesions are in a narrow space. Perhaps brain and occular lesions have more room for neuroplasticity to be a factor. Thanks.

@barbaradascalos4411

Жыл бұрын

Lesions do not really cause disability... cortical.. gray matter..and spinal atrophy are what causes disability. see "usual suspect lesions ms"

@mary-vy3mo

Жыл бұрын

Lesions do not usually cause disability...it is gray matter atrophy and spinal atrophy.. See "usual suspect lesions zivadinov"

Great talk! my RRMS MS began 25 yrs ago and i started with avonex shots- now theres pills wow 😜 i keep healthy-ish with exercise, nutrition, and doing dog care- thanx 4 the updated info- I will stay posted 😜

Does MS effect the myelin in peripheral nerves or just in the CNS?

@DrBrandonBeaber

Жыл бұрын

Just the CNS. myelination of the peripheral nervous system is different and executed by different cells (Schwann cells). Similarly, inflammatory peripheral demyelinating diseases such as chronic inflammatory demyelinating polyneuropathy (CIDP) do not affect the central nervous system.

I tend to agree with you multiple sclerosis is multiple sclerosis it's just a trend chart is the difference

I was told to chill out when I saw my first neurologist 10 years before my diagnosis of MS. Even offered Valium to help me chill out! Just had some weird sensory symptoms that I knew were not normal, and this was in 2000. That was 10 lost years of treatment.🙁

@RobdeKlerk-qg6lc

7 ай бұрын

Does starting earlier with treatment makes difference ?

The information is very helpful. Not so scary

@Sandi533

Ай бұрын

@@orbitingdecay6797 agree

The wonderful HSCT Dr. Richard Burt treats SPMS but not PPMS. Why?

I am a 64 year old male, was DX'd with MS 17 years ago. MRI then revealed lesions on my spinal cord. I have not tried diets and have done Avonex, Tysabri, Copaxone, Techfidera, Aubagio, Mayzent and now Ocrevus (last 2.5 years.) I felt best on Tysabri and then 2nd would be Ocrevus. However I have advanced and would be a 6 on the EDDS scale. My experience makes me believe that DMTs work and should not be stopped once started. My worst advances in disability occured when I stopped Aubagio (actually flushed it out with cholestrime sp?) when transitioning to Mayzent. It was like the Aubagio was holding back the disease. Anyway, I am curious if there's any evidence, other than ancedotal, that a specific diet works. I suspect a good diet helps slow down the progression but doesn't cure it or stop it.

@barbaradascalos4411

Жыл бұрын

DMT are not very effective for ms progression...only stopping by 3-5 years time to edss 6 see "how ms patients acquire disability"

If SPMS and PPMS look the same on MRI, what are the differences (or are there differences) from RRMS? I could have been looking at my own MRI there - I've been told I have a large number of periventricular lesions, moderate brain volume loss, basically my brain sounds like a mess. But I have no physical disability and still run marathons. I work full time and only have mild cognitive symptoms like brain fog and trouble with word finding (I can always remember the term "word finding" though!) I also had five relapses before I was diagnosed: two within six months, three years of remission then three in the year I was eventually diagnosed (in February, April and October 2017). Your mention of arthritis made me smile as I actually do have arthritis, confirmed by X-ray. What sort of symptoms do people have when they think they have arthritis but actually have MS?

@TankoxD

Жыл бұрын

Progressive MS is kind of Aging changes that's why it is being prevailing diagnosed after 40s

@barbaradascalos4411

Жыл бұрын

Yes..that sounds like bad MRI..your best bet is to get hsct and stop the progression to spms. watch "60 minutes Australia ms youtube"

I agree that different types of progressive MS is misleading. I was diagnosed in 2011 and I have just gotten steadily worse ever since. No flair ups or episodes that came and went. I just keep getting worse little by little. All my MRI reading comments essentially say "no significant change", "stable", "unchanged" or the like while I decline every year. MS is MS I'm afraid. Progressive or not. Everyone just seems to get worse over time. So it's always progressive to me.

What’s happened to PRMS? (Me.) I noticed extremely subtle neuro impairment at age 31 in 1995 during the first trimester of my second pregnancy then have progressed continuously over these past 29 years. My first flare was about ten years in, followed by a couple more big ones within the next couple of years. I then continued progressing until having another flare or two just this past summer. I have NEVER had an enhancing lesion. I would seem to have cord PRMS but those few of us are now “a man without a country”, it seems.

Great video Dr. Beaber! This is especially poignant for me. I don’t ever remember recovering from a “relapse” but early on in my diagnosis my neurologist labeled me with RRMS so I could try a DMT as there were no approved DMT’s for progressive MS at that time. Now I’d like to try ocrevus but my neurologist says I won’t be covered by my provincial Pharmacare insurance program (I’m from Canada) because ocrevus is only approved for RRMS and PPMS, not SPMS. I’d have to pay out of pocket for ocrevus which isn’t feasible.

My disease course is really aggressive. My EDSS has increased by about 1pt for each year since my first symptoms/diagnosis in 2015 at age 40. So today my EDSS is at least 7.5. Is it possible to have both RRMS and SPMS concurrently? My disability progression seems mostly driven by a significant old cervical lesion that I had upon diagnosis, yet in the past two years I have had new symptoms along w/ new lesions on my brain.

@barbaradascalos4411

Жыл бұрын

PIRA is the spms and RAW is the rrms... sometimes you get both occuring at same time.....this is the fastest progression. And yes more disability comes from gray matter and spinal atrophy where the brain connects to the spine. see "how ms patients acquire disability" see "usual lesions zivadinov"

@lt7587

11 ай бұрын

This sounds so challenging, I'm sorry for what you've gone through. I also believe it's not too late to make some improvements - if you haven't already used it before, I can so recommend OMS- Overcoming MS - an international charity, helping very many people. It's based on evidence based information and provides hope but also has improved many people's health thanks to sustaining certain lifestyle changes.

Also interesting that both men and women are about 50-50 even on primary Progressive

Seeing what type of MS I had at my autopsy... Prob a little too late of a diagnosis for my taste.

Perhaps they are the same disease but with different etiologies and the different etiologies affect the course. Or perhaps the degree of the continuing etiology, for example stress, affects the progression of the disease. Does ms take a different course if the persons life is stressful during the illness for example vs a less stressful life leading to milder relapses? Perhaps RRMS is due to traumatic or chronic stress during the course of the disease whereas PPMS patients have overall less stress and few to no traumatic events during the course. I really think allostatic load plays a role in this disease. I am hopeful that the relatively new field of neuroimmunology holds the answer. Stress is highly linked to flares and relapses, therefore, maybe stress is a big part of the equation. In the west, we have largely forgotten the mind body connection in medicine.

Is there an average time period for someone moving from relapsing to progressive forms of MS? Also, what percentage of people diagnosed with RRMS never develop a progressive form of it? I'm guessing a majority of RRMS patients (>50%) go on to develop a progressive form of MS.

@barbaradascalos4411

Жыл бұрын

Atara Bio says 80% will become spms.. time has huge variance...from 2 years to 50..yes someone posted it took 50 years and it was night/day difference. This is why critical to get hsct before rr turns progressive and hsct is no longer effective. Most these days seem to transition between year 15-30

My Nuro says just about same thing once it hits progressive

Also I wonder if estrogen plays a part in the relapsing and but then again men have it too so

Does it matter if my Ms is passive!

10-year disability outcomes from Phase III Ocrevus open-label extension (OLE) trials After 10 years of continuous Ocrevus treatment, 77% of patients with RMS were free from disability progression based on 48-week confirmed disability progression (CDP) events and 92% of patients were still walking unassisted. In patients with PPMS, 36% were free from disability progression based on 48-week CDP events and 80% of those patients treated continuously with Ocrevus over 10 years were still able to walk. These long-term data reinforce the critical importance of early treatment in preserving function across the MS spectrum, showing a lower risk of reaching disability events in patients with RMS and PPMS who initiated Ocrevus treatment earlier (initiating at the start of the double-blind studies vs. the start of the OLEs). Very different outcomes supports two different diseases. I’m 65 years old recently diagnosed with PPMS.

@DrBrandonBeaber

Ай бұрын

Respectfully, I don't agree with the statement "Very different outcomes supports two different diseases." 20 year olds with pneumonia have a better prognosis than 80 year olds with pneumonia. People with walking pneumonia have a better prognosis than people with pneumonia, sepsis, and multiorgan failure. Do they have "two different diseases"? Many diseases have a highly variable prognosis. In many disease, treatments work well for certain people with the disease but are less effective in others.

@philsylvain4241

Ай бұрын

@@DrBrandonBeaber Thanks for the reply. I watch your videos regularly.

Can anybody help me for ppms eating and sport please need your help

A rose by any other name. Is this similar to PPObesity, SPObesity and RRObesity? Can we tell the difference?

Thanks for this information, Dr. Beaber! I have a question about EDSS: what does it mean to "need a cane"? For support? For balance? I can walk without a cane for >500 meters, but I like to use a cane because my balance is unpredictable.

@TankoxD

Жыл бұрын

Using a cane is usually regarding your legs not balance.

@TankoxD

Жыл бұрын

If you CAN walk 500 meters without a cane but prefer using it anyways means you have an EDSS 4 not 6

@youandmeandmultiplescleros402

Жыл бұрын

@@TankoxD That's what I hoped would be the case!

@barbaradascalos4411

Жыл бұрын

Do everything you can now because once edss hits 4 it is very difficult to stop it and progression just continues.

@youandmeandmultiplescleros402

Жыл бұрын

@@barbaradascalos4411 You may be right, Barbara. I'm taking care of my general health as best as I know how; it's really impossible to predict what MS will do.

How many people have old leasions with no symptoms and die in old age with no problems?

Can number of oligoclonal bands have anything to do with the type of MS you have?

@DrBrandonBeaber

10 ай бұрын

There is some association between bands and prognosis, but they are not strongly associated with subtype. You may like this video on OCBs and prognosis: kzread.info/dash/bejne/nqpquNGym6S2kso.html

Hi, enjoyed the video. You only present data that supports your case. There is other research, someone already mentioned a recently published paper, that suggest ppms has a least one different mechanism. Why don’t you include this and debate why you still hold your view. I’ve heard others that seem to agree with you who suggest it is one disease composed of a range of different mechanisms that may be more or less prevalent in different individuals.

@DrBrandonBeaber

Жыл бұрын

If you think there is research which goes against my argument, please feel free to post a link, and I will take a look at it. In my opinion, the evidence is completely overwhelming.

I used to think they were different diseases but with what you say it looks to me they are the same. When I look at the symptom list for both, I can identify strongly with both so I now think they are the same.

@DrBrandonBeaber

10 ай бұрын

:) I'm glad I convinced you. The evidence is unequivocal.

@zeezedd-nq6ht

10 ай бұрын

​@@DrBrandonBeaberplease Dr help me me ppms i need to learn eating habits and sport please send me url or whatever else i need help please Dr me so bad((

All the same, progressive. Loved the video. However the ending points to study’s not including the older MS pt. Or better yet say EDSS 7 pt. Has anyone and would you treat a 63yo with Active lesion with Ocrevus knowing it had not been researched in that population? Or say stick with old school steroid burst treatment. Is there an “Ageism” in. This area a research?

SPMS and PPMS are ultimately the same diseases, just different stages really, I'm currently active SPMS so I still get relapses unfortunately

@07broly

Жыл бұрын

​@@orbitingdecay6797 same except that it targets the immune system specifically rather than targeting the whole body with chemotherapy.

@07broly

Жыл бұрын

@@orbitingdecay6797 I'm starting the safer Lemtrada for now as I would really love to have a child 😓

Great video thanks Dr. Brandon. MS Base study is confusing me. EDSS-wise, data shows RRMS is more disabling than PPMS. Is it just another proof that EDSS is somewhat lacking disability grading? I mean if I have PPMS or SPMS sooner, I will need a cane later. Do I miss something?

@DrBrandonBeaber

Жыл бұрын

I could make another video arguing against the distinction between RRMS and SPMS. I am not familiar with the MS base study suggesting RRMS is worse. Do you have a link?

@1nsanetr

Жыл бұрын

​@@DrBrandonBeaber I purely comment on the graphic that you share. If I accept the EDSS as a disability progression, after T0+7 years RRMS patients are worse compared to PPMS patients. Either I interpret the data wrong or it is simply confusing. @8:20 You say that RRMS, the dark line actually does worse. I just try to figure out the reasoning. Thank you very much.

@DrBrandonBeaber

Жыл бұрын

@@1nsanetr The graphic at 8:20 is % who have NOT progressed from EDSS to 4.0 to 6.0 (a survival curve)

@1nsanetr

Жыл бұрын

​@@DrBrandonBeaber More PPMS onset patients remained below EDSS 6 after the year 7. I expected the opposite hence my confusion :) The median age difference between the groups maybe? I totally understand EDSS 6-7 graphics that may support SPMS and PPMS are the same. I feel much better and more secure when I learn more about MS. I really appreciate the time that you spend with us. Thank you so much.

@hotpastrami

Жыл бұрын

Thank you for the good reasoning against the PPMS/SPMS distinction. Why don’t you also back it up with the tactics used by Biogen in the 80’s to boost the chances of FDA approval for Interferone treatments by artificially segmenting patient populations in order to achieve orphan drug designation. That way listeners could understand that these medical concepts are also motivated by clear commercial considerations..

Hello. Thank you for the video. It seems to me that discussing MS only in terms of the inflammatory process and demyelination is foolish. The focus should be on the application of multidisciplinary approaches, and the ideas of pruning and neural network darwinism are extremely important here. When discussing the problem of secondary progressive multiple sclerosis and primary progressive multiple sclerosis, much of their difference compared to the relapsing-remitting form will lie in the fact that the patient has not recovered well after relapse, which is often an error in recovery due to the high development of neural networks in the lesion area. Is it reasonable to judge from these perspectives that SPMS and PPMS are, to some extent, a localization of the lesion in the CNS? In my view, partly, yes.

@DrBrandonBeaber

6 ай бұрын

I think doctors tend to think in terms of treatment targets (i.e. smouldering inflammation or mitochondrial dysfunction). I'm sure there are other factors in determining whether an individual person experiences progression.

Hi doc what are the chances that someone with MS has a normal brain MRI (without contrast) and how often should we do an MRI to find out if it's MS if the symptoms don't subside Thanks

@soravrathi2273

Жыл бұрын

Same query have u got any answer

I wish I knew wats wrong with me

❤

If your first ms symptoms are very mild, you could be relapsing and not even know it. I can remember having episodes of tingling in my neck back in 1990, but it was such a minor symptom, I didn’t even report it to my doctor. I had optic neuritis in 1996 and neurologist said I might have ms. I wasn’t diagnosed until 2004, but not conclusively, because my main symptom was pain. At that time many neurologists were still saying that pain was not an ms symptom. The lesion in my spine was not found until 2005. I didn’t even hear the term PPMS until 2013. I think it’s highly probable that SPMS and PPMS are the same thing

Need a European Union country or some Mott open government to try the Epstein-Barr vaccine I would love to see if that would work in a country

Progressive is progressive. Period! 63.75 yo female began RRMS began progressive disability 16 years ago. Dx. Age 30. Powerchair 7 years. No meds since Avonex and Copaxone prior to 2007. Waiting on death I guess.

Sign me up!

I think I have had MS since birth and that was before I had mono or car accident, so I believe it’s PPMS. If I didn’t suffer from coordination issues and struggle with memory from my early childhood. Otherwise I would say SPMS but they are both progressive!!!

Its 1 disease, 1 person get worse faster than others..same with cancer for example..

HAS anyone taken 1,000 RRMS and 1,000 PPMS and followed their journey? How many RRMS actually turn into SPMS, i actually dont know anyone. All i know is out of all the people I know with RRMS their disease is nothing like mine. In actual fact I would rather have PPMS. well i would rather have neither. ALL MY FREINDS who are in wheelchairs are RRMS. maybe its diffrent in UK. in UK we have about 110,000 RRMS, and only 1500 PPMS.

@barbaradascalos4411

Жыл бұрын

rrms is more common than ppms... It is thought that 80% of rr will become sp.

@hedgehogwildlifejunction9119

Жыл бұрын

@@barbaradascalos4411 yes i know 130,000 in uk against 1500 PPMS. the disease is not the same as RRMS.

@barbaradascalos4411

Жыл бұрын

When rrms turns into spms at age 45 then they are exact same disease...age of ppms dx and age of spms converdion are both same age range...usually 35-55...same disease...ms is one neurodegenerative disease.

Can you please place me in a study?😊

giant killers are trained in the wilderness -Shallua

I think it’s the same disease it just presents/progresses a little bit differently in different people. I also think that all drugs should be available to patients no matter the stage of their disease. you never know what might help someone. Dalfampridine, for example is approved to assist with walking, but I know that it also helps with hands. I know it isn’t a DMT.