Thank you Dr. Beaber for this very informative video. I am 70 now, just switched to an"MS expert " suggested by my neuro, I mentioned this video to her and she had never heard of Smoldering MS! I think this is what is going on with me since I am 70 y.o. now and was officially diagnosed in 2000 with relapsing remitting. My DSS score for my disability was 6 after several years of excerbations .For now , my copaxone has been stopped.
I just found this, thank you so much for this information and your video. My neurologists are now only looking at my future MRI scans from a 'smouldering lesion perspective' to warrant any new treatment. I didn't really understand what it meant for me but this all makes sense. Thanks for what you do for the MS community.
Thanks for the informative video. When I was dx 18 years ago I was told I was lucky that I had RRMS. It now appears that relapses are just the body’s response to “something” damaging going on in the CNS. Recent research points the finger at EBV. I hope BTK inhibitors will have a positive effect on smouldering MS. I suspect that what we really need are anti-virals or treatments that help our immune system clear our CNSs’ of EBV infection.
Yes..it turns out ppms is the real ms no relapse total Neurodegeneration. RRMS and relapses are just the effects of younger age coping with EBV Neurodegeneration. So rr and pp are same disease. See "ms is primarily neurodegenerative pubmed"
Great video. Dr. You are absolutely amazing. My wife has been diagnosed MS last three weeks back and we have been taking time to digest and adjust our life style. Your work and bringing the knowledge to the common man is stunning. I know this will be a journey for us going forward to adapt and change. Will follow more and keep up the great work!!🎉
Fascinating! Thank you for this. So much to think about. I’m 49, dx at 33, one flare that got me my diagnosis, and on Kesimpta now which I love. I do notice my existing symptoms getting worse with time- particularly heat intolerance, fatigue, musculoskeletal pain, and paresthesia. I’ve been thinking a lot lately about how to possibly tease apart what is MS, what is perimenopause, weight gain, and what is just aging. This just gives me more to think about! Very interesting. Thank you!
Oh, good it isn't all in my head, crap, it is. Thank you for the time you put in to getting this information to us, we are lucky to have you on our side.
Excellent video! It doesn’t leave many happy thoughts for where I am in my MS journey , or even how to proceed now. Or what DMT to take as a 58 year old who is PIRA.
Great presentation Dr. Beaber. I recently had worsening of symptoms and switched medications. The “smoldering” you described makes sense. Thanks for doing what you do.
Good vide, Thanks Dr Beaber. What a timing? I have been the "feeling the progression" in the last few weeks. Just got the MRI report yesterday and guess what? "No new lesions were found in brain and spine". According to the MRI, my MS stable; yet per my own assessment (and my wife and son), I'm doing worse the last few weeks with respect to balance and motor fatigue than before. I totally understand and agree with the "Smoldering MS" hypothesis.
Great video. We have been very good at stopping the fire of MS (MRI lesions and relapses) which is really important and definitely has helped a lot Now its time to focus more and more on the silent ember. We need less studies and trials talking about relapses and MRI lesions, and more about disability progression on the progressive stages
Dr Beabs ty for going in depth on smoldering lesions. We have all heard of it- ty for bringing the science/ evidence to our eyes and explaining it. Well done video. Sharing everywhere. Rock on 🤘🏻 Doc
@@DrBrandonBeaber I second this. The work you are doing here is absolutely incredible and gives people so much hope for the future. You are what every doctor should aspire to be.
Thank you so much for this video. I was always curious about the difference between damage seen on MRI and damage seen on autopsy. What all was getting missed? My neuro still seems very focused on lesions even when I complain of my symptoms getting worse. I hope that papers like this will convince more MDs to approach their MS patients differently.
look into (bio identical) estradiol loss or low numbers correlating to MS symptoms...also use bio identical progesterone to protect (and build) the myelin sheath which is what it was designed to do naturally.These are discoveries about how the human body works anyway. NIH library online
I love your videos on the topic of MS. I am currently 38 and was diagnosed in 2017 in the West Roxbury VA medical center with RRMS. I started my treatment with Ocravus and did that up until recently. Today I took my second dose of Kesimpta, making me the very first veteran in the Boston VA health care system taking this medication. The reason why I chose to change is simple. I got tired of sitting for 6 hours getting a fusion drip. I look forward to this new medication. Thank you for making these videos. They are so informative. Stay safe.
I've had 3 neurologists and described my disease course to each as a general worsening, punctuated by a handful of very noticeable relapses...and I did have residual, permanent damage some major, some minor following relapse....like your video....like smoldering MS. I'm glad people are uncovering more and challenging the old paradigms because those stifle creative thinking and problem solving.
Thank you for the information. My latest MRI has shown a slight increase in a parietal lobe lesion and a few other possible paramagnetic rim lesions. It validates what I have long felt about my disease activity, but at the same time; being on Ocrevus for five years I had gotten used to seeing no new activity on my MRI. This was a helpful video because I’m still two weeks away from my MS Specialist appointment. 🙏🧡
Wow!! Thank G_d this is finally being discussed. I’ve been Diagnosed since 2007 and have progressed tremendously, despite STABLE MRI’s. I’ve been begging to be validated. I’ve been thru Lemtrada, Ocrevus and now Mavenclad. I’ve progressed regardless. Thank you from the bottom of my heart
FDA doesn't approve medical procedures..only food and drugs..hsct chemo has been approved in 1959. If spms and still able to stand/move..it's not too late. Some in w/c do it just To preserve hands. India is 30k.. Russia/Mexico 50k. Wow..you've been through all the DMT..but yes people failed Alemtuz have then responded to hsct.
Wonderful video Dr. Beaber! It really give us MS warriors hope for more effective treatments to help stop progression in the future. I love seeing the articles and evidence to these findings. Can’t wait to hear more in future videos ☺️
This video just got you a new subscriber! I enjoy your teaching style, you explain things like a doctor but it’s understandable. I’m in! I was diagnosed with RRMS Jan, 2012. Thanks for making this video. It’s bringing me a bit more hope. I had no idea of the 3 different categories of MS drugs. 🤯🙏🏾👊🏾 🤌🏾
I’ve only just found your channel. My mri scans have been stable for over a year yet I’m still progressing, much to my neurologist confusion. I’m seeing him on Tuesday so will be discussing this with him ! Thank you so much for this video
I have been watching my uric acid level and more recently zinc and copper levels… they are highly indicative of oxidative stress. Zinc is super low, copper super high, ceruloplasmin high (I have easy access to labs…), and my uric acid has been literally undetectable for years now. I have RRMS and was told at diagnosis 8 years ago that I had benign MS (as I am currently recovering from my most recent relapse with foot drop…) I also have a super high early antigen EBV level. I totally believe in the shouldering MS, I have been incredibly frustrated over the last 8 years by doctors telling me that because there were no active lesions on my MRI that my symptoms weren’t related to my MS at all (this is at a major MS center) I am so happy to see videos like yours and to be honest, the fact that you support the OMS/swank way of eating is the final sign I need that it’s the right way to go after trying to figure out what to do diet wise for my MS. Thank you for providing us this info ☺️ I would love to hear more about oxidative stress and mitochondrial damage and possible supplements to treat or support
Thank you, Dr. Beaber, for yet another wonderfully explained video. I appreciate the walk-through and I learned something new today about anticholinergics. I take notes during your videos! Keep up the important work you're doing and we appreciate you!!!
I finally feel that there is a treatment available for those who no longer fall into the RRMS category and/or have had MS longer than 15 to 25 years and their symptoms are classified as SPMS. This brings hope to many who are experiencing decline without MRI lesions to “prove” it. Addressing brain volume loss in MS is also exciting! I cannot speak for others, but I felt that having a diagnosis of nonactive MS meant that there was an abyss patients fell into where there were no treatment options and no studies undertaken for this patient population. Thank you for bringing this promising information to light.
@@ldjt6184 Right now it is only HSCT that gives normal .2 brain atrophy. The Atara 188 T cell therapy worked but only for 40% of people. BTK is just now starting trials but it may get in brain and stop progression..new drugs take years and years which you don't have..unless you are diagnosed yesterday.
I'm 33. I was diagnosed at 17. Was on capaxone until this year. I've honestly had barely any relapses but had one 2 years ago prompting me to switch to kesimpta. My MRI has many many lesions but I am fully functional and doing great. I feel great. I always wondered how I'm doing so well with so many lesions. I thank God I am but MS is a very weird disease and I can tell it's not even close to be fully understood I work in malignant heme and use the BTKis in CLL. A lot of side effects and definately decreases immunity. People tend to get weird opportunistic infections on them, hypertension, bleeding etc. Otherwise they are well tolerated and I'm sure it's dose dependant. In terms of total body mass of ocrevus. Larger people tend to replenish their b cells quicker than the average person
Awesome video with a lot of thought provoking information! Despite having many lesions, for years I've only had very mild attacks of numbness that would heal with no lasting effects. My neuro wasn't happy about the lesions, but I felt great. Yet despite having no new lesions for the past few yrs, now I have some mild leg spasticity. This disease is crazy! I remember reading about the iron in the brain right after my dx over 20 yrs ago and always wondered if that discovery would lead anywhere. As usual, your explanations and visual aids are on point!
Thank you for this. I have a deep reluctance to find a new neurologist since I've moved to a new state and it's been over a year since I've seen a PCP, over 2 years since I struck out on the last neurologist I visited. It's become degrading and my self image has suffered at their hands. According to them "I look fine", I haven't really relapsed, my multiple lesions on my brain, brain stem and spine are not enhancing or the new lesions are small, and I'm walking without a cane, even if I depend on a wall to keep my balance. I feel they doubt me. If not for my dx I would expect them to call me a liar and a person just seeking pills and disability status, one who just doesn't want to work. I pray to God that this smouldering MS becomes common knowledge because it feels right to me, I instantly recognize it in myself...dx 2004 RRMS. I would expect my next appointment, whenever that happens, will change that dx to SPMS. I think my EXTREMELY DEBILITATING fatigue can be legitimately attributed to this constant activity. I am so devastated by doctors erroneous conclusions. And my life and body and relationships have suffered disastrously. Walking into a doctor's office and crying the entire time has been unavoidable, unendearing and the many reasons it happens has become so convoluted that I just don't have the cognitive capacity anymore to unravel this mess. I can't be the only one and I hope, with more information about smouldering MS, that we can be better understood and achieve a better quality of life.
You just told the story of my life until my diagnosis in 2018 - believe me that I was relieved to learn that I'm not just a raving hypochondriac, as my GP and other doctors of every specialty (including a neurologist or two) related to me.
@@Jerusalem_Warrior I am glad that is not your story anymore. My perspective on life has changed so many times in the last 2 decades. I am both humbled and defiant. I have no doubt I have learned some hard lessons but, still, I can't transcend my need to see a doctor. Lol and lmao.
Nice Summary of the recent Barts publication! Failing proof to the contrary, I’m still going with their earlier paradigm that puts equal weight on the SEL, BVL, reduced functionality of Mitochondria and continued presence of stealth viral infection in the CNS. Given that there’s no way to clearly quantify the impact of any single factor, I’d consider it worthwhile to address each one on an ongoing basis. Would it be possible to share your views on current concepts to prevent BVL and/or improve Mitochondrial support for Neurons? In particular, concerning BVL, what do you think about the Portland studies with Alpha Lipoic Acid supplements? Has there maybe been any further follow up in this area? Concerning Mitochondrial function, I still think that a case can be made for concentrated Biotin here which did go all the way up to Phase 3 studies and was actually an approved treatment for progressive MS in France for several years. While the final study did fall short of primary endpoint, there was measurable improvement measured across all study groups, just not enough to qualify as significant. A more thorough analysis of subgroups and retests would have probably put MD1003 over the finish line IMHO. Anyways, I have personally been taking both supplements regularly for nearly 10 years now and feel complete stability, even slight improvements. It would be interesting to share your thoughts on this topic in some future clip. Thanks.
Excellent video. I especially liked the EDSS graphic axis scale at about 9 minutes into video. This does a great job of reminding us how the numeric scale relates to disability. The challenge is to do something similar for MSFC. I wish you well. PS. I suggest investing in a Shure SM7B microphone to significantly improve the quality of your recordings. This would be appreciated by my 70 year old ears. I do not want to miss a word of what you are saying. It appears you may be using a "stereo" mic with has phase distortion. Use a cardioid mic (like SM7B) instead.
Thank you for doing this video dr. Brandon, I apologize for being 14 hours late commenting. In my opinion you really nailed it in this video, every year I get an MRI it says no new lesions so I'm supposedly stable but I'll tell my friend I sure don't feel it some days. My one question is are we anywhere close to finding a good treatment for progressive MS? Thanks again for all your hard work sir , it's much appreciated and so are you. God bless you and have a great night.
@@marydascalos9673 thank you Mary but unfortunately at this time as I understand oh, you have to leave the United States to get this treatment. Also I'm told health insurance doesn't cover it in a lot of cases. And finally the fact that I'm 55 May exclude me from hsct.
Thank you for this. Had my annual Dr appt last week. I follow you and Dr Giovanion and understand smouldering quite well. I asked the question- what is your view of smouldering MS? The answer I got was it only incurs in Progressive MS so it’s not applicable to me. Gah! MS is frustrating alone let alone to having someone who isn’t up to date on the latest research. Thankfully to external circumstances I am able to transfer to a teaching hospital going forward. Thank you for all you do and educating so many patients.
Hi my son was put in a coma for over 4 weeks was diagnosed with marburg variant multiple sclerosis and weston hurst syndrome when woke up he was paralysis down his right side. It all come back magic his got drop foot. Put he can set up and shuf in to his wheel chair. He turned 18th two day after he woke up .we so proud of him we so lucky to have his with us ❤️ its e been 3 months now so going back for mri On Tuesday he had a very big lesson. Do you any information on marburg and weston hurst syndrome and how thay progress please 🙏 lennie noonan's like syndrome cbl not many cases of this syndrome to thanks love the way you teach 😘
One of the most informative videos you have ever done Doctor. Thank You. My thoughts are that this paints a very poor picture of the effects of current DMTs and courses of treatment strategies and therefore this type of honest data will push MSers away from accepting the known and sometimes unknown side effects of DMTs in favor of lifestyle improvements. According to my interpretation of this video this approach may be the best way to go. This has been the argument of people like Dr Wahls and a few others for many years. But scenically you cannot make big Pharma money off of that strategy can you?
I just had MRIs on brain, cervical spine, and thoracic spine. Neurologist said no new lesions. But my balance and cognition have gotten far worse. I guess it is smoldering MS. I am grateful for this video because I knew I was getting worse even though my neurologist thinks there is no progression because of no new lesions.
HI Dr. Beaber...I loved your presentation! It's such a fascinating topic of discussion that we need more info on for sure in the MS world. How do you repair mitochondrial injury? Also, and this might be a dumb question, but do iron supplements contribute to or worsen these iron-rimmed lesions?
If MS is a complicated disease than what is ALS..ALZ..and PsP..the natural history studies alone..should have told people it was not a disease of relapses.
I am on Ocrevus and have a low bmi. It seems to be working quite well for me but would love it if they were able to do it every 3 or 4 months instead of 6 months as my symptoms start to worsen in the 6 weeks leading up to my next infusion. Also i use diet and lifestyle but I definitely do feel like it is always “smoldering”. Thank for the video, helps reinforce the importance of things i can manage to limit disease progression.
I’m contemplating Ocrevus and was curious about how it effects those of us with PIRA and low BMI. I haven’t had any new MRI activity since being diagnosed, but go between using a walker and wheelchair. I was walking independently a few months ago.
@@erinnicolefranco6807 I have only completed my first cycle and just received my second full infusion. I have noticed a worsening of symptoms for up to a weak after the infusion but from then on I believe it was a life saver for me. It got rid of fatigue, balance issue, spasticity and it almost eliminated a spasm in my left hamstring that pull on nerves and was excruciatingly painful, to the point where i frequently thought that if if this is the rest of my life I didn’t want to live it. My walking improved, i was on the verge of need a cane and after the treatment kicked walking improve a lot. Now from what i have read in reviews it seems that either is works great for you or it is bad. Reviews are one extreme or the others. I focused on the positive reviews as i know having a positive outlook is extremely important. So i hope this helps you in your decision and if you do go on it i hope it works as well or better for you than it has for me.
No particular reason (perhaps just because it is newer). I do have a video on kesimpta: th-cam.com/video/IIBBlvnPjS0/w-d-xo.html and another video comparing kesimpta with ocrevus: th-cam.com/video/BVhN4_sEi1s/w-d-xo.html
Smoldering microglia supports the idea that nitric oxide is the problem (not B cells), since that is produced primarily by the microglia, and kills oligodendrocytes.
By the way, inflammation does not show in my blood. But I have "flare up" every month or so. Not diagnosed. Lots of symptoms but no plausible definitive indicator. I'm 35. And I started having all the symptoms in 2019. Except leg pain. Leg pain started like age 23. They did determine that I have peripheral neuropathy with no known cause. Not diabetic. Also they have found abnormal protein in blood work.
Yes, yes, yes, YES! THIS is where it's at! I do NOT need a neurologist to tell me that my disability is progressing relentlessly, despite the Ocravus. And despite that the MRI reads stable. I COULD use some sympathy from the neurologist - when I asked her to consider moving up the Ocravus treatment by a few weeks (wonder what a bawling out I would have gotten had I asked her to increase the dose!), she claimed it's not allowed, and offered me a 3 day course of Solomedrol instead. The result of which would provide you with an interesting topic for your next video: As the steroids went down, so did I. Literally. Sinking towards the ground, and losing what little locomotion and bladder control I had left. Waiting to recover and go back to just plain bad!! 😟
:( I do not do well with steroids either. I went blind in both eyes temporarily (about 5-7 months)after the last time I had solumedrol. My Dr said I am no longer allowed to get it because my ms is aggressive and steroids don't work on aggressive ms I wonder if you would respond/improve to IVIG instead of solumedrol.
This sounds just like what I am experiencing; worsening of symptoms with no activity on MRI. Walking ability seems to be a big issue for me. I went from walking and running normally about 3 years ago to often needing a cane. I actually stopped Ocrevus as this decline seems to have started to occur right after starting it. My thinking is/was that Ocrevus is partly to blame. I don't know! I stopped Ocrevus about a year ago and started Tysabri a few months ago. Still don't see improvement on symptoms.
Thanks for the video. I'm wondering what your take is on Lion's Mane mushroom supplements for remyelination (if you've delved into those few studies at all). Fruiting body powder of LM in it's bioavailable form is said to be able to cross the blood brain barrier and is currently used in treatment for Parkinsons disease in the Far East.
Short question regarding the CNS microglia mentioned @ 7:20: Do you know if HSCT have an impact on this kind of inflammation? I.e will HSCT also target the innate immune activation?
And I think the article (and your presentation of it) is really good. It makes so much sense at all levels. I also particularly found it interesting to see how Prof Wahls, Prof Sinclair, and Prof Giovannoni all seem to talk about the same things, though from a functional medicine/genetics/neurology point of view in terms of aging.
Dr Beaber. I once asked you a question about not having heat sensitivity or lhermitte sign. What if having negative hoffman sign and babinski reflexes are also negative?
Hoffman's sign and Babinski's sign (upgoing toes) are signs of spinal cord injury, but they are not present in many people with MS even if they have spinal cord lesions. I can't comment on your specific situation.
Where do we get these scans? I'm 46, living in Spain, dx 2001. My standard MRIs are "normal" - but I can feel stuff getting subtly worse. EDSS measures walking. I make my living with my hands as much as my brain. I've lost strength and mobility in my hand and have obvious cognitive deficit (obvious to me, that is). I'm yet to find lucrative work that rewards ability to walk... whereas being able to type, being able to work with my hands and being able to think straight obviously are...
So... would remylination drugs stop smoldering? If that's the case...lifestyle changes, effective DMT, Remylination drug would pretty much be our "cure" ?! So many diseases with no cure. We just need to make ms boring. One more question... how many more yrs do you think for remylination drugs to come to market if the ongoing trials right now are successful? I'm trying to find a seed of hope to cling to and keep fighting I love these informative videos- even when they can be discouraging/scary.
Hi Dr Beaber - do you do consultations? Do you have a video on “what would I do if I had MS”- I am a Disabled Nurse- 54 years old, my disability came from anxiety issues. I am on Copaxone and I have 2 kids under 18- I want to be more aggressive- video suggestions appreciated. Thanks for you videos- they are very informative.
Thank you for this. I find it useful and live in UK. Was diagnosed with MS in 1991 when I was 18. Have been on glatiramer acetate for about 18 years. I think it is still relapsing remitting. I get regular emails from Gavin Giovanonni which are helpful as well. I am registered on the MS tissue donation register.
I hope you are doing well. I wasn't impressed with Glatiramer acetate and it did nothing to control my MS, and the research is that it very minorly reduces relapses but as the video says, relapses aren the whole story. Please consider other options if you feel like your disease isnt under control. Wishing you the best
Gavin has said he would get hsct if he had ms.. getting emails from him will inform you but it won't treat you ms..get hsct while you are still rrms..90% are spms by 25 years of ms..and once spms hsct doesn't work as well.
Does this suggest that specialized PET scans should possibly become more widely used as a standard scan for MS patients, and are these types of scans widely available in most hospitals? Also, would microglial inhibitors be envisaged to be used in combination with standard b/t cell depleters at the same time or separately at different stages in the disease? I wonder if there is a risk that targeting microglial instead of b/t cells is just moving from one problem to another, unless they are expected to be used together
The problem with PET scans right now is the obtained information would not be actionable. What would we do in response to a PET scan showing smouldering inflammation? In the future, this could be a different story. In the future, it is possible that combination therapy (say a b-cell depleter plus a medication which works on microglia) could be shown to be beneficial. Of course, there may be additional risk in combining therapies.
Hello doctor. I want to ask you what do you think is the best medication for newly diagnosed aggressive MS? I'm on Rituximab, but my doctor told me that Cladribine is great. Which one is better? And do you think about other medications I can look about? Thank you a lot 🌹🌹
This is really interesting, thanks! It is evident how little the current western medical systems really understand about MS. And they're so trapped in doing whatever the drug companies tell them that few doctors are willing to look outside the box and see what else we might learn and what else might really help patients. MRIs are an amazing invention, but they don't tell use every single thing about this complex condition.
But people think if they have no relapse/lesions from Ocrevus ms is under control and they won't progress...the big lie of ms..it is not a disease of relapses but rather brain atrophy..And hsct is only DMT to give normal. Brain atrophy of .2 and avoiding brain smoldering. Someone posted it took 50 years for him to be spms and it was night/day difference so don't think ms ever stays mild.
Hmmm now I’m super confused my Nuero says it’s impossible to progress with a stable MRI are you saying otherwise, can smoldering MS cause new symptoms or does it only cause worsening of old symptoms.
I just found this and that explains my progression over the years. Thank you for pointing this out. I will tell my new doctor and hopefully she’s up on this research. I don’t know what the fuck we could do about it. At least she knows.
@@SO-te5cl thanks so much, I have MS symptoms for many years, like spasticity In finger, tingling, pinch and needles feeling all over my body, but no typical onsets like no mobility issues or eye problem. Maybe this video will explain some of it.
@@arr2820 3 years.. burning sensations, tingling, pinch and needles and in the most random parts of my body. But recently more often in feet. But I’m a very fit person, working out 6 days week, maybe I’m sort of holding my MS at bay.. neurologist did head MRI but said it looks fine. It literally feels like I’m just waiting for onset. Nothing else is matching these symptoms. Oh and I have autoimmune skin condition.
Thanks for the video! But it is a reality check I wasn't prepare to hear. I was super hopeful for the new class of ms drugs (BTK) but it makes me scared to think that we're only now talking about smouldering MS while I think it has pretty obvious that relapses have nothing to do with general progression. How many 70+ year olds with ms do we have that have a normal life no matter the relapses? That should've been a clue. Even though it's hard to hear all of this please continue giving us updates regarding this!
Don't see how..it's progressive disease..as we age we get shingles as immune system can't control viruses..and ms becomes progressive..as ebv is less controlled.
..woman posted it took 40 years for her to turn sp..man then posted took 50 years for him and then it was night/day difference symptom wise. So if they had been diagnosed at 30 they would have reached 70-80 but then they both started a decline.
Why don't they correct the natural problem presented?...MS has low estrogen and progesterone is gobbled...bio identicals may help with fewer repercussions...
Confusion here..if they so stable..are they even on treatment..and why are these patients still coming to see you..? I know Atara and ms society say 80% never turn progressive..but never seen a study that proves this..you'd have to follow people to the grave to prove it.
@@arr2820 no..wrong..you don't have to wait to see..you just look at their brain atrophy rate. If they are at .2 they are at normal atrophy and not progressing. But we know people w/ms are at .5-1.3% atrophy rate google "Normal atrophy after hsct for ms" and read The papers that come up. Also "does rrms always progress to spms"
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Thank you Dr. Beaber for this very informative video. I am 70 now, just switched to an"MS expert " suggested by my neuro, I mentioned this video to her and she had never heard of Smoldering MS! I think this is what is going on with me since I am 70 y.o. now and was officially diagnosed in 2000 with relapsing remitting. My DSS score for my disability was 6 after several years of excerbations .For now , my copaxone has been stopped.
I just found this, thank you so much for this information and your video. My neurologists are now only looking at my future MRI scans from a 'smouldering lesion perspective' to warrant any new treatment. I didn't really understand what it meant for me but this all makes sense. Thanks for what you do for the MS community.
Thanks for the informative video. When I was dx 18 years ago I was told I was lucky that I had RRMS. It now appears that relapses are just the body’s response to “something” damaging going on in the CNS. Recent research points the finger at EBV. I hope BTK inhibitors will have a positive effect on smouldering MS. I suspect that what we really need are anti-virals or treatments that help our immune system clear our CNSs’ of EBV infection.
Yes..it turns out ppms is the real ms no relapse total Neurodegeneration. RRMS and relapses are just the effects of younger age coping with EBV Neurodegeneration. So rr and pp are same disease. See "ms is primarily neurodegenerative pubmed"
Great video. Dr. You are absolutely amazing. My wife has been diagnosed MS last three weeks back and we have been taking time to digest and adjust our life style. Your work and bringing the knowledge to the common man is stunning. I know this will be a journey for us going forward to adapt and change. Will follow more and keep up the great work!!🎉
Thanks for the kind words. I will keep making videos.
Fascinating! Thank you for this. So much to think about. I’m 49, dx at 33, one flare that got me my diagnosis, and on Kesimpta now which I love. I do notice my existing symptoms getting worse with time- particularly heat intolerance, fatigue, musculoskeletal pain, and paresthesia. I’ve been thinking a lot lately about how to possibly tease apart what is MS, what is perimenopause, weight gain, and what is just aging. This just gives me more to think about! Very interesting. Thank you!
Oh, good it isn't all in my head, crap, it is.
Thank you for the time you put in to getting this information to us, we are lucky to have you on our side.
Excellent video! It doesn’t leave many happy thoughts for where I am in my MS journey , or even how to proceed now. Or what DMT to take as a 58 year old who is PIRA.
Great presentation Dr. Beaber. I recently had worsening of symptoms and switched medications. The “smoldering” you described makes sense. Thanks for doing what you do.
Good vide, Thanks Dr Beaber. What a timing? I have been the "feeling the progression" in the last few weeks. Just got the MRI report yesterday and guess what? "No new lesions were found in brain and spine". According to the MRI, my MS stable; yet per my own assessment (and my wife and son), I'm doing worse the last few weeks with respect to balance and motor fatigue than before. I totally understand and agree with the "Smoldering MS" hypothesis.
Unfortunately, your experience is very common. We must do better with our treatment of progressive MS.
I'm in the same situation and this has been on my mind recently. So your video is ever so timely. Thanks.
Great video.
We have been very good at stopping the fire of MS (MRI lesions and relapses) which is really important and definitely has helped a lot
Now its time to focus more and more on the silent ember. We need less studies and trials talking about relapses and MRI lesions, and more about disability progression on the progressive stages
Exactly
Not only do we need more studies, but the upper age restrictions should include the elderly since they fall into this group.
Dr Beabs ty for going in depth on smoldering lesions. We have all heard of it- ty for bringing the science/ evidence to our eyes and explaining it.
Well done video. Sharing everywhere. Rock on 🤘🏻 Doc
:)
@@DrBrandonBeaber I second this. The work you are doing here is absolutely incredible and gives people so much hope for the future. You are what every doctor should aspire to be.
Thank you so much for this video. I was always curious about the difference between damage seen on MRI and damage seen on autopsy. What all was getting missed?
My neuro still seems very focused on lesions even when I complain of my symptoms getting worse. I hope that papers like this will convince more MDs to approach their MS patients differently.
EXACTLY!! 👌👌‼️
look into (bio identical) estradiol loss or low numbers correlating to MS symptoms...also use bio identical progesterone to protect (and build) the myelin sheath which is what it was designed to do naturally.These are discoveries about how the human body works anyway. NIH library online
I love your videos on the topic of MS. I am currently 38 and was diagnosed in 2017 in the West Roxbury VA medical center with RRMS. I started my treatment with Ocravus and did that up until recently. Today I took my second dose of Kesimpta, making me the very first veteran in the Boston VA health care system taking this medication. The reason why I chose to change is simple. I got tired of sitting for 6 hours getting a fusion drip. I look forward to this new medication.
Thank you for making these videos. They are so informative. Stay safe.
Best of luck to you with Kesimpta.
@@DrBrandonBeaber thank you. I remember watching one of your videos about the two and thought I’d learn more and ultimately decided to go this way.
Come si chiama il nuovo farmaco?
I've had 3 neurologists and described my disease course to each as a general worsening, punctuated by a handful of very noticeable relapses...and I did have residual, permanent damage some major, some minor following relapse....like your video....like smoldering MS. I'm glad people are uncovering more and challenging the old paradigms because those stifle creative thinking and problem solving.
Thank you for the information. My latest MRI has shown a slight increase in a parietal lobe lesion and a few other possible paramagnetic rim lesions.
It validates what I have long felt about my disease activity, but at the same time; being on Ocrevus for five years I had gotten used to seeing no new activity on my MRI.
This was a helpful video because I’m still two weeks away from my MS Specialist appointment. 🙏🧡
This helps me understand why I have so few lesions but, at age 54, am disabled. Based on walking alone am 6.5 - 7.5 on EDSS. Thank you
Same exact here. Smoldering is a good term for it.
Yep, same here. 👌 ‼️
Absolutely brilliant video Dr. B! I look forward to hearing more about this.
Check out Professor Giovannoni's blog as he talks about this often. I will definitely do a follow up on the bruton's tyrosine kinase inhibitors.
@@DrBrandonBeaber thanks!
Wow!! Thank G_d this is finally being discussed. I’ve been Diagnosed since 2007 and have progressed tremendously, despite STABLE MRI’s. I’ve been begging to be validated. I’ve been thru Lemtrada, Ocrevus and now Mavenclad. I’ve progressed regardless. Thank you from the bottom of my heart
Have you thought to try hsct..?
@@barbaradascalos4411 it is not FDA approved here as of yet. I’ve thought about it but not seriously. I feel like being SPMS might mean it’s too late.
FDA doesn't approve medical procedures..only food and drugs..hsct chemo has been approved in 1959.
If spms and still able to stand/move..it's not too late. Some in w/c do it just
To preserve hands. India is 30k.. Russia/Mexico 50k. Wow..you've been through all the DMT..but yes people failed Alemtuz have then responded to hsct.
Wonderful video Dr. Beaber! It really give us MS warriors hope for more effective treatments to help stop progression in the future. I love seeing the articles and evidence to these findings. Can’t wait to hear more in future videos ☺️
This video just got you a new subscriber! I enjoy your teaching style, you explain things like a doctor but it’s understandable. I’m in! I was diagnosed with RRMS Jan, 2012. Thanks for making this video. It’s bringing me a bit more hope. I had no idea of the 3 different categories of MS drugs. 🤯🙏🏾👊🏾 🤌🏾
I'm glad it was helpful. Let me know if you have a video suggestion.
I’ve only just found your channel. My mri scans have been stable for over a year yet I’m still progressing, much to my neurologist confusion. I’m seeing him on Tuesday so will be discussing this with him ! Thank you so much for this video
Get hsct if you can to stop the progression.
See "normal brain atrophy after hsct"
I have been watching my uric acid level and more recently zinc and copper levels… they are highly indicative of oxidative stress. Zinc is super low, copper super high, ceruloplasmin high (I have easy access to labs…), and my uric acid has been literally undetectable for years now. I have RRMS and was told at diagnosis 8 years ago that I had benign MS (as I am currently recovering from my most recent relapse with foot drop…)
I also have a super high early antigen EBV level. I totally believe in the shouldering MS, I have been incredibly frustrated over the last 8 years by doctors telling me that because there were no active lesions on my MRI that my symptoms weren’t related to my MS at all (this is at a major MS center)
I am so happy to see videos like yours and to be honest, the fact that you support the OMS/swank way of eating is the final sign I need that it’s the right way to go after trying to figure out what to do diet wise for my MS. Thank you for providing us this info ☺️ I would love to hear more about oxidative stress and mitochondrial damage and possible supplements to treat or support
Thank you, Dr. Beaber, for yet another wonderfully explained video. I appreciate the walk-through and I learned something new today about anticholinergics. I take notes during your videos! Keep up the important work you're doing and we appreciate you!!!
Thanks. I appreciate it. Let me know if you have any video suggestions.
A video on anticholengenics? (I don't even know how to spell it lol!)
Great video! Thank you! Can’t wait until all of these puzzle pieces fit together!
I finally feel that there is a treatment available for those who no longer fall into the RRMS category and/or have had MS longer than 15 to 25 years and their symptoms are classified as SPMS. This brings hope to many who are experiencing decline without MRI lesions to “prove” it.
Addressing brain volume loss in MS is also exciting! I cannot speak for others, but I felt that having a diagnosis of nonactive MS meant that there was an abyss patients fell into where there were no treatment options and no studies undertaken for this patient population.
Thank you for bringing this promising information to light.
So what is the name of the treatment to treat smouldering MS?
@@ldjt6184 Right now it is only HSCT that gives normal .2 brain atrophy. The Atara 188
T cell therapy worked but only for 40% of people. BTK is just now starting trials but it may get in brain and stop progression..new drugs take years and years which you don't have..unless you are diagnosed yesterday.
I'm 33. I was diagnosed at 17. Was on capaxone until this year. I've honestly had barely any relapses but had one 2 years ago prompting me to switch to kesimpta. My MRI has many many lesions but I am fully functional and doing great. I feel great. I always wondered how I'm doing so well with so many lesions. I thank God I am but MS is a very weird disease and I can tell it's not even close to be fully understood
I work in malignant heme and use the BTKis in CLL. A lot of side effects and definately decreases immunity. People tend to get weird opportunistic infections on them, hypertension, bleeding etc. Otherwise they are well tolerated and I'm sure it's dose dependant.
In terms of total body mass of ocrevus. Larger people tend to replenish their b cells quicker than the average person
Awesome video with a lot of thought provoking information! Despite having many lesions, for years I've only had very mild attacks of numbness that would heal with no lasting effects. My neuro wasn't happy about the lesions, but I felt great. Yet despite having no new lesions for the past few yrs, now I have some mild leg spasticity. This disease is crazy!
I remember reading about the iron in the brain right after my dx over 20 yrs ago and always wondered if that discovery would lead anywhere. As usual, your explanations and visual aids are on point!
Leg spasticity is often the first sign of rr becoming more progressive..look into hsct or Mavenclad.
Good informative video Dr. thanks.
Words I wasn't aware of, that I'll try to take to my consult in a couple of weeks (MRI this Saturday!)
Thank you for this. I have a deep reluctance to find a new neurologist since I've moved to a new state and it's been over a year since I've seen a PCP, over 2 years since I struck out on the last neurologist I visited.
It's become degrading and my self image has suffered at their hands. According to them "I look fine", I haven't really relapsed, my multiple lesions on my brain, brain stem and spine are not enhancing or the new lesions are small, and I'm walking without a cane, even if I depend on a wall to keep my balance. I feel they doubt me. If not for my dx I would expect them to call me a liar and a person just seeking pills and disability status, one who just doesn't want to work.
I pray to God that this smouldering MS becomes common knowledge because it feels right to me, I instantly recognize it in myself...dx 2004 RRMS. I would expect my next appointment, whenever that happens, will change that dx to SPMS. I think my EXTREMELY DEBILITATING fatigue can be legitimately attributed to this constant activity. I am so devastated by doctors erroneous conclusions. And my life and body and relationships have suffered disastrously.
Walking into a doctor's office and crying the entire time has been unavoidable, unendearing and the many reasons it happens has become so convoluted that I just don't have the cognitive capacity anymore to unravel this mess.
I can't be the only one and I hope, with more information about smouldering MS, that we can be better understood and achieve a better quality of life.
You just told the story of my life until my diagnosis in 2018 - believe me that I was relieved to learn that I'm not just a raving hypochondriac, as my GP and other doctors of every specialty (including a neurologist or two) related to me.
@@Jerusalem_Warrior I am glad that is not your story anymore. My perspective on life has changed so many times in the last 2 decades. I am both humbled and defiant. I have no doubt I have learned some hard lessons but, still, I can't transcend my need to see a doctor. Lol and lmao.
Excellent! Thank you!
I'd be interested to hear more about metformin and MS.
Nice Summary of the recent Barts publication!
Failing proof to the contrary, I’m still going with their earlier paradigm that puts equal weight on the SEL, BVL, reduced functionality of Mitochondria and continued presence of stealth viral infection in the CNS. Given that there’s no way to clearly quantify the impact of any single factor, I’d consider it worthwhile to address each one on an ongoing basis.
Would it be possible to share your views on current concepts to prevent BVL and/or improve Mitochondrial support for Neurons?
In particular, concerning BVL, what do you think about the Portland studies with Alpha Lipoic Acid supplements? Has there maybe been any further follow up in this area?
Concerning Mitochondrial function, I still think that a case can be made for concentrated Biotin here which did go all the way up to Phase 3 studies and was actually an approved treatment for progressive MS in France for several years. While the final study did fall short of primary endpoint, there was measurable improvement measured across all study groups, just not enough to qualify as significant. A more thorough analysis of subgroups and retests would have probably put MD1003 over the finish line IMHO.
Anyways, I have personally been taking both supplements regularly for nearly 10 years now and feel complete stability, even slight improvements.
It would be interesting to share your thoughts on this topic in some future clip.
Thanks.
Excellent video. I especially liked the EDSS graphic axis scale at about 9 minutes into video. This does a great job of reminding us how the numeric scale relates to disability. The challenge is to do something similar for MSFC. I wish you well.
PS. I suggest investing in a Shure SM7B microphone to significantly improve the quality of your recordings. This would be appreciated by my 70 year old ears. I do not want to miss a word of what you are saying. It appears you may be using a "stereo" mic with has phase distortion. Use a cardioid mic (like SM7B) instead.
Thank you for doing this video dr. Brandon, I apologize for being 14 hours late commenting. In my opinion you really nailed it in this video, every year I get an MRI it says no new lesions so I'm supposedly stable but I'll tell my friend I sure don't feel it some days. My one question is are we anywhere close to finding a good treatment for progressive MS? Thanks again for all your hard work sir , it's much appreciated and so are you. God bless you and have a great night.
Hsct is only thing that gets down to .2 brain atrophy
@@marydascalos9673 thank you Mary but unfortunately at this time as I understand oh, you have to leave the United States to get this treatment. Also I'm told health insurance doesn't cover it in a lot of cases. And finally the fact that I'm 55 May exclude me from hsct.
@@roberture5903 age is not issue..u.k. woman 75 went to Russia..cost is as India is cheapest at 30,000 ..most are 50,000..:(
Basically we're screwed no matter what we do.
Terry Wahls
@@Earthoceanfire435 Con lady
Haha , negative but you probably right..
Thank you for your MS videos 🙏
Thank you for this. Had my annual Dr appt last week. I follow you and Dr Giovanion and understand smouldering quite well. I asked the question- what is your view of smouldering MS? The answer I got was it only incurs in Progressive MS so it’s not applicable to me. Gah! MS is frustrating alone let alone to having someone who isn’t up to date on the latest research. Thankfully to external circumstances I am able to transfer to a teaching hospital going forward.
Thank you for all you do and educating so many patients.
Hi my son was put in a coma for over 4 weeks was diagnosed with marburg variant multiple sclerosis and weston hurst syndrome when woke up he was paralysis down his right side. It all come back magic his got drop foot. Put he can set up and shuf in to his wheel chair. He turned 18th two day after he woke up .we so proud of him we so lucky to have his with us ❤️ its e been 3 months now so going back for mri
On Tuesday he had a very big lesson. Do you any information on marburg and weston hurst syndrome and how thay progress please 🙏 lennie noonan's like syndrome cbl not many cases of this syndrome to thanks love the way you teach 😘
I am gonna cry, theres no fucking hope for us with MS
One of the most informative videos you have ever done Doctor. Thank You. My thoughts are that this paints a very poor picture of the effects of current DMTs and courses of treatment strategies and therefore this type of honest data will push MSers away from accepting the known and sometimes unknown side effects of DMTs in favor of lifestyle improvements. According to my interpretation of this video this approach may be the best way to go. This has been the argument of people like Dr Wahls and a few others for many years. But scenically you cannot make big Pharma money off of that strategy can you?
Same with hsct...pharma..ms societies..and neurologists are all against it because none can make money off it.
Thank you for the education
I just had MRIs on brain, cervical spine, and thoracic spine. Neurologist said no new lesions. But my balance and cognition have gotten far worse. I guess it is smoldering MS. I am grateful for this video because I knew I was getting worse even though my neurologist thinks there is no progression because of no new lesions.
This is very frustrating but unfortunately quite common.
Hello from sunny South Africa
Thank you for making sucha great video
HI Dr. Beaber...I loved your presentation! It's such a fascinating topic of discussion that we need more info on for sure in the MS world. How do you repair mitochondrial injury? Also, and this might be a dumb question, but do iron supplements contribute to or worsen these iron-rimmed lesions?
I unfortunately do not know the answer to either question.
What I got from this video is that after all these years, all the studies and drugs, we still don’t know jack about MS
We are definitely still learning. MS is a complicated disease
I didn’t mean to be unpleasant, I love your videos and watch all of them…just frustrating that there hasn’t been more breakthroughs.
@@kellyjohnson1702 I understand
If MS is a complicated disease than what is ALS..ALZ..and PsP..the natural history studies alone..should have told people it was not a disease of relapses.
@@DrBrandonBeaber "still learning" after all these year's y'all are still learning!!!!!!!
I am on Ocrevus and have a low bmi. It seems to be working quite well for me but would love it if they were able to do it every 3 or 4 months instead of 6 months as my symptoms start to worsen in the 6 weeks leading up to my next infusion. Also i use diet and lifestyle but I definitely do feel like it is always “smoldering”. Thank for the video, helps reinforce the importance of things i can manage to limit disease progression.
I’m contemplating Ocrevus and was curious about how it effects those of us with PIRA and low BMI. I haven’t had any new MRI activity since being diagnosed, but go between using a walker and wheelchair. I was walking independently a few months ago.
@@erinnicolefranco6807 I have only completed my first cycle and just received my second full infusion. I have noticed a worsening of symptoms for up to a weak after the infusion but from then on I believe it was a life saver for me. It got rid of fatigue, balance issue, spasticity and it almost eliminated a spasm in my left hamstring that pull on nerves and was excruciatingly painful, to the point where i frequently thought that if if this is the rest of my life I didn’t want to live it. My walking improved, i was on the verge of need a cane and after the treatment kicked walking improve a lot. Now from what i have read in reviews it seems that either is works great for you or it is bad. Reviews are one extreme or the others. I focused on the positive reviews as i know having a positive outlook is extremely important. So i hope this helps you in your decision and if you do go on it i hope it works as well or better for you than it has for me.
@@robhruska7611 thank you!
I feel worse after Ocrevus
@@teakara that’s good to know and I’m sorry to hear that 😞
Great video.
Thanks
Great video Doc, one of your best.
I’ve enrolled in one of the phase 3 studies in BTK inhibitors (Tolebrutonib) fingers crossed.
Come gai fatto a iscriverti?
Thank you Dr. As always very interesting and informative, need to talk to my Dr about this. 👍
My favorite video so far. Curious to why you rarely mention Kesimpta when discussing the b-cell depleters?
No particular reason (perhaps just because it is newer). I do have a video on kesimpta: th-cam.com/video/IIBBlvnPjS0/w-d-xo.html and another video comparing kesimpta with ocrevus: th-cam.com/video/BVhN4_sEi1s/w-d-xo.html
Do conventional MRI"s show gray matter?
I have heard that is where MS does the most damage during progressive stage.
I would like to know about this as well.
Great question
Smoldering microglia supports the idea that nitric oxide is the problem (not B cells), since that is produced primarily by the microglia, and kills oligodendrocytes.
By the way, inflammation does not show in my blood. But I have "flare up" every month or so. Not diagnosed. Lots of symptoms but no plausible definitive indicator. I'm 35. And I started having all the symptoms in 2019. Except leg pain. Leg pain started like age 23. They did determine that I have peripheral neuropathy with no known cause. Not diabetic. Also they have found abnormal protein in blood work.
Yes, yes, yes, YES! THIS is where it's at! I do NOT need a neurologist to tell me that my disability is progressing relentlessly, despite the Ocravus. And despite that the MRI reads stable. I COULD use some sympathy from the neurologist - when I asked her to consider moving up the Ocravus treatment by a few weeks (wonder what a bawling out I would have gotten had I asked her to increase the dose!), she claimed it's not allowed, and offered me a 3 day course of Solomedrol instead. The result of which would provide you with an interesting topic for your next video: As the steroids went down, so did I. Literally. Sinking towards the ground, and losing what little locomotion and bladder control I had left. Waiting to recover and go back to just plain bad!! 😟
:(
I do not do well with steroids either. I went blind in both eyes temporarily (about 5-7 months)after the last time I had solumedrol.
My Dr said I am no longer allowed to get it because my ms is aggressive and steroids don't work on aggressive ms
I wonder if you would respond/improve to IVIG instead of solumedrol.
This sounds just like what I am experiencing; worsening of symptoms with no activity on MRI. Walking ability seems to be a big issue for me. I went from walking and running normally about 3 years ago to often needing a cane. I actually stopped Ocrevus as this decline seems to have started to occur right after starting it. My thinking is/was that Ocrevus is partly to blame. I don't know! I stopped Ocrevus about a year ago and started Tysabri a few months ago. Still don't see improvement on symptoms.
Thanks for the video. I'm wondering what your take is on Lion's Mane mushroom supplements for remyelination (if you've delved into those few studies at all). Fruiting body powder of LM in it's bioavailable form is said to be able to cross the blood brain barrier and is currently used in treatment for Parkinsons disease in the Far East.
Very smart of you Doc. I thought it would be obvious that conventional MRIs don't show what really pushes progression ahead
Short question regarding the CNS microglia mentioned @ 7:20: Do you know if HSCT have an impact on this kind of inflammation? I.e will HSCT also target the innate immune activation?
I don't know.
And I think the article (and your presentation of it) is really good. It makes so much sense at all levels. I also particularly found it interesting to see how Prof Wahls, Prof Sinclair, and Prof Giovannoni all seem to talk about the same things, though from a functional medicine/genetics/neurology point of view in terms of aging.
Dr Beaber. I once asked you a question about not having heat sensitivity or lhermitte sign. What if having negative hoffman sign and babinski reflexes are also negative?
Hoffman's sign and Babinski's sign (upgoing toes) are signs of spinal cord injury, but they are not present in many people with MS even if they have spinal cord lesions. I can't comment on your specific situation.
@@DrBrandonBeaber Thanks for the reply. I appreciate your taking time and answering the questions here not only posting videos.
Where do we get these scans?
I'm 46, living in Spain, dx 2001. My standard MRIs are "normal" - but I can feel stuff getting subtly worse. EDSS measures walking. I make my living with my hands as much as my brain. I've lost strength and mobility in my hand and have obvious cognitive deficit (obvious to me, that is). I'm yet to find lucrative work that rewards ability to walk... whereas being able to type, being able to work with my hands and being able to think straight obviously are...
These specialized scans are used only for research purposes at this point.
So... would remylination drugs stop smoldering?
If that's the case...lifestyle changes, effective DMT, Remylination drug would pretty much be our "cure" ?!
So many diseases with no cure. We just need to make ms boring.
One more question... how many more yrs do you think for remylination drugs to come to market if the ongoing trials right now are successful? I'm trying to find a seed of hope to cling to and keep fighting
I love these informative videos- even when they can be discouraging/scary.
Hi Dr Beaber - do you do consultations? Do you have a video on “what would I do if I had MS”- I am a Disabled Nurse- 54 years old, my disability came from anxiety issues. I am on Copaxone and I have 2 kids under 18- I want to be more aggressive- video suggestions appreciated. Thanks for you videos- they are very informative.
I do have a video on this exact topic (What I would do): th-cam.com/video/WW2KfxvfUTc/w-d-xo.html However, there are a lot of individual variables.
Howdy from Australia
thanks Dr. !
You're very welcome. I hope the video was helpful
Thank you for this. I find it useful and live in UK. Was diagnosed with MS in 1991 when I was 18. Have been on glatiramer acetate for about 18 years. I think it is still relapsing remitting. I get regular emails from Gavin Giovanonni which are helpful as well.
I am registered on the MS tissue donation register.
I hope you are doing well. I wasn't impressed with Glatiramer acetate and it did nothing to control my MS, and the research is that it very minorly reduces relapses but as the video says, relapses aren the whole story. Please consider other options if you feel like your disease isnt under control. Wishing you the best
Gavin has said he would get hsct if he had ms.. getting emails from him will inform you but it won't treat you ms..get hsct while you are still rrms..90% are spms by 25 years of ms..and once spms hsct doesn't work as well.
Does this suggest that specialized PET scans should possibly become more widely used as a standard scan for MS patients, and are these types of scans widely available in most hospitals? Also, would microglial inhibitors be envisaged to be used in combination with standard b/t cell depleters at the same time or separately at different stages in the disease? I wonder if there is a risk that targeting microglial instead of b/t cells is just moving from one problem to another, unless they are expected to be used together
The problem with PET scans right now is the obtained information would not be actionable. What would we do in response to a PET scan showing smouldering inflammation? In the future, this could be a different story. In the future, it is possible that combination therapy (say a b-cell depleter plus a medication which works on microglia) could be shown to be beneficial. Of course, there may be additional risk in combining therapies.
Do any of the current MS DMTs at all touch smouldering MS, such as dimethyl fumarate, perchance?
They may have some effect, but certainly some people have clinically progressive MS despite taking these therapies and having stable MRIs.
Hello doctor.
I want to ask you what do you think is the best medication for newly diagnosed aggressive MS?
I'm on Rituximab, but my doctor told me that Cladribine is great.
Which one is better? And do you think about other medications I can look about?
Thank you a lot 🌹🌹
HSCT...
Thanks Doc. In addition to MS, I have hemochromatosis. Could these two be linked?
This is really interesting, thanks! It is evident how little the current western medical systems really understand about MS. And they're so trapped in doing whatever the drug companies tell them that few doctors are willing to look outside the box and see what else we might learn and what else might really help patients. MRIs are an amazing invention, but they don't tell use every single thing about this complex condition.
I'm glad you liked the video. More on this topic later.
Well, this is terrifying. It's also the most discouraged I've been about my future in a while :(
There have also been study done during 30 years. The more years your progress in edss is small(or none) the more probability it will stay mild
@@arr2820 Thank you, that helps.
Not really..90% progress to spms by 25 rrms years..google "does rrms always progress to spms"
@@barbaradascalos4411 even google can show a table if 30 year study dine and the progress over the years and levels of edss statistics.
But people think if they have no relapse/lesions from Ocrevus ms is under control and they won't progress...the big lie of ms..it is not a disease of relapses but rather brain atrophy..And hsct is only DMT to give normal. Brain atrophy of .2 and avoiding brain smoldering. Someone posted it took 50 years for him to be spms and it was night/day difference so don't think ms ever stays mild.
Hmmm now I’m super confused my Nuero says it’s impossible to progress with a stable MRI are you saying otherwise, can smoldering MS cause new symptoms or does it only cause worsening of old symptoms.
that's exactly what this says..new symptoms without a relapse or mri lesion.
see "smoldering ms the real ms"
so basically it is true that no new lesions not equals no disability progression, so current treatments are not best solution? remylination is ?
I hope BTK-inhibitors will soon be approved.
Hey how do you think about botox therapy maybe next week
Is ruxience good for ms ????
Dr. Brandon. My name is Smolder. is there anyway on the face of this earth that I can talk to you personally for five minutes?
I just found this and that explains my progression over the years. Thank you for pointing this out. I will tell my new doctor and hopefully she’s up on this research. I don’t know what the fuck we could do about it. At least she knows.
Hello Dear, I want to talk with you personally. I am a patient of MS(spinal). Please help me.
Information for me to know
Is it possible to only have smouldering MS and no onsets? Or is that just called progressive MS.
th-cam.com/video/EHVXJpDBcmU/w-d-xo.html
@@SO-te5cl thanks so much, I have MS symptoms for many years, like spasticity In finger, tingling, pinch and needles feeling all over my body, but no typical onsets like no mobility issues or eye problem. Maybe this video will explain some of it.
@@save400 how long do you have it
@@arr2820 3 years.. burning sensations, tingling, pinch and needles and in the most random parts of my body. But recently more often in feet. But I’m a very fit person, working out 6 days week, maybe I’m sort of holding my MS at bay.. neurologist did head MRI but said it looks fine. It literally feels like I’m just waiting for onset. Nothing else is matching these symptoms. Oh and I have autoimmune skin condition.
@@save400 did you have both brain and spinal cord mri's?
Are the cells like some kind of cancer??
Thanks for the video! But it is a reality check I wasn't prepare to hear. I was super hopeful for the new class of ms drugs (BTK) but it makes me scared to think that we're only now talking about smouldering MS while I think it has pretty obvious that relapses have nothing to do with general progression. How many 70+ year olds with ms do we have that have a normal life no matter the relapses? That should've been a clue. Even though it's hard to hear all of this please continue giving us updates regarding this!
There are 70 year-olds with MS with low-disability. More on this later.
@@DrBrandonBeaber Waiting for it Doc. I don't know such persons unfortunately
Don't see how..it's progressive disease..as we age we get shingles as immune system can't control viruses..and ms becomes progressive..as ebv is less controlled.
@@TankoxD They're out there. Trust me.
..woman posted it took 40 years for her to turn sp..man then posted took 50 years for him and then it was night/day difference symptom wise. So if they had been diagnosed at 30 they would have reached 70-80 but then they both started a decline.
Why don't they correct the natural problem presented?...MS has low estrogen and progesterone is gobbled...bio identicals may help with fewer repercussions...
What is basis of your statement that "MS has low estrogen and progesterone"?
But there are many who live normal life
Yes absolutely. I also have many older patients with progressive MS who are very stable.
@@DrBrandonBeaber I guess there are also some subtypes of smouldering ms. When the progress is too slow to affect much after 15, 20 years or so
Confusion here..if they so stable..are they even on treatment..and why are these patients still coming to see you..? I know Atara and ms society say 80% never turn progressive..but never seen a study that proves this..you'd have to follow people to the grave to prove it.
@@barbaradascalos4411 they are stable without treatment. We'll just wait and see
@@arr2820 no..wrong..you don't have to wait to see..you just look at their brain atrophy rate.
If they are at .2 they are at normal atrophy and not progressing. But we know people w/ms are at .5-1.3% atrophy rate google
"Normal atrophy after hsct for ms" and read
The papers that come up. Also "does rrms always progress to spms"
smoldering.. :P