MS: Stem Cells Won't Work
Vložit
- čas přidán 17. 05. 2024
- In this video, I discuss my skepticism of stem cell treatments of multiple sclerosis. I explain why it would be very difficult for stem cells to get to the site of injury and remyelinate. At the end of the video, I offer hope for future improvements.
Comment or ask questions below! I would be happy to answer!
Subscribe on CZcams for more videos every Wednesday!
Make video requests in the comments section!
Check out my book “Resilience in the Face of Multiple Sclerosis” FREE on Amazon: amazon.com/dp/B07WP7H5LK It's about 5 people with MS who live incredible lives, the science and psychology of resilience, mindfulness, and ho’oponopono. Paperback priced to generate $0 royalty.
Dr. Brandon Beaber is a board-certified neurologist with subspecialty training in multiple sclerosis and other immunological diseases of the nervous system. He is a partner in the Southern California Permanente Medical Group and practices in Downey, California (South Los Angeles). He has several publications on MS epidemiology and has participated in clinical trials for MS therapeutics. You can follow him on twitter @Brandon_Beaber where he regularly posts about MS news and research.
Follow me on twitter: / brandon_beaber
Music: INNER GRACE - Copyright 2018 Wilton Vought Source: Really Really Free Music Link: • Video T
he video material by Dr. Brandon Beaber is general educational material on health conditions and is not intended to be used by viewers to diagnose or treat any individual's medical condition. Specifically, this material is not a substitute for individualized diagnostic and treatment advice by a qualified medical/health practitioner, licensed in your jurisdiction, who has access to the relevant information available from diagnostic testing, medical interviews, and a physical examination. To the extent that Dr. Beaber endorses any lifestyle change, behavioral intervention, or supplements, the viewer should consult with a qualified healthcare professional to determine the safety and efficacy of the intervention in light of their individualized information. - Věda a technologie
I'm an MS patient and a large amount of my lesions are in my cervical spine. I've been put into a wheelchair in less than a year, and that was 8 years ago. I have a SCI due to MS and was considering Stem Cell treatment but it's insanely expensive. This video really makes me think because all I hear are the 100% positive stories. I say thank you for this video! Hope you feel better soon!
I wouldn't say this is a downer video. It's good to be informed. Thank you Dr. Beaber.
Thanks. I didn't know what response this video would get.
Thanks, despite all that insidious progression, I now feel more reassured that going straight onto Ocravus upon diagnosis in 2018 and staying there is about the best I could have done. A speedy recovery and Happy Pesach from Jerusalem!
Same here, Ocrevus since 2019 first diagnose. I was considering aHSCT and even saved some money but the treatment is working so I don't see a point.
Working, and more important, well tolerated. I've heard of HCST survivors not getting back to themselves, in Israel and abroad. And I think I recall Dr. Beaber once comparing Ocravus to HCST and noting enough similarities. @grzegorzporada
@@Jerusalem_Warrior I previous did a video on an observational study comparing HSCT with ocrevus, tysabri, and gilenya: czcams.com/video/ybrfO7FkedU/video.html
I'm on ocrevus 4 years and it has been the best choice for me, I wish you all the best on it, stay positive
A doctor who never shares the negatives or any apprehensions is not a doctor that you can trust. Thanks for the great video as always!
Thanks
Thank you for specifically addressing the difference between these treatments and HSCT. I frequently advise people (non medically) to really research what they are looking at and what they are paying for.
Yep. I know a person with MS (like me) that got this done. She may have gotten it done at the same place you mentioned at the beginning of your video. Spent thousands of $. I think 16 thousand. Did not help at all. People try these treatments because they are DESPERATE. My friend had active SPMS and was on her way to being in a chair. Fear is a strong emotion, so a person may be warned about the futility of trying these treatments, but still spend the money and go through with it.
Thanks for sharing. No doubt people with poor results are less likely to share on social media.
Nice video Dr. B. This is an excellent discussion. Thank you for making this video!
As you say it, most of people are unfortunately confusing HSCT with stem cell treatments !!
Regarding BEAM vs Cyclophosphamide based regimen, check out talk at EBMT 2024 by Dr Fedorenko.
Thanks for your vids
Thanks for this video. A topic for a next video may be the results of the studies on Clemastine {REBUILD and RESTORE clinical trials). Best
Double blind studies have been the gold standard I hope we add robust quantitative biomarkers (quicker information) to evaluate therapies in an unbiased manner … can you make a video about biomarkers and their vetting process. Also have you done a video on Car T - cell therapy? Always appreciate your videos … good health to all!
Thank you for letting me know this information. I should not have said to others that this was a hope on the horizon. Failure of remylization seems to be the focal point of my interest going forward.
So glad you explain that stem cell treatment is not AHSCT for MS as Dr Fedorenko in Russia for the past 2 years has a 95% success rate for RRMS Patients. Same Protocall will soon be done in US!
No it won't. Big Pharma and Government will make sure of that.
Get well soon, Brandon. Thanks for the very good video.
Thanks for explaining the difference between BEAM and HSCT. I’ve been on ocrevus for 2 years but considered lemtrada to avoid long term suppression. Can you do a video comparing HSCT to Lemtrada?
How about HSCT doctor? Does it help in MS?
Get well soon ! Who knows what the future will bring - as you said.
Thanks. I have already recovered since filming this video.
@@DrBrandonBeaber I'm glad to hear that.
@DrBrandonBeaber, Could you please make a video discussing research and advancement in the area of re-myelination, for example, Nervgen's NVG-291 and Contineum Therapeutics' Pipe-307 and Pipe-791?
Thanks for your videos, you've been a great source of information since my dx 2 years ago! As a suggestion for a future video, we have a new test approved in Canada to track MS progression (ETNA-MS) and it would be great to have your opinion about it.
Thanks for the suggest. I would have to look into this.
Thx for the info
Interesting. Thanks. But if HSCT is a chemotherapy treatment, what would you call lemtrada and cladrabine? Are these also chemotherapy treatments, just not as potent? Can you please make a video specifically on the mechanisms of these 3 drugs and how they compare with each other. I'm on cladrabine now and it is wiping my immune system. Is that not chemotherapy?
I had BEAM treatment for PCNSL.
How did it go?
Where did you have it done?
There are many explorers in theMS Scientific Community - all leading to different discoveries- coming at the problem from various angles-❤ awesome video
Thanks
I agree with you 100%.
Get well soon, doc😊
Thanks
I'm beginning with Briumvi but I already infuse IVIG for CVID.
I've a collection not a fun one but it does make sense. Primary immune deficiency and the collection of autoimmunity.
The Basque genetic predisposition studies are very accurate in my case.
Thank-you for another very interesting video and get well soon sir
Thanks
@@DrBrandonBeaber I never would have known that you were sick until you told us at the end of the video. You are tough as nails Dr Brandon
Its worked in plenty of patients, there are various studies showing it. I think you might be a little misinformed.
VERY misinformed
How dose gadalenium penetrate the blood brain barrier and locate enhance new active lesions
Is this a silly question? Gad can penetrate the bbb intravenously but stem cells cant?
My father's stem cells were used to create the first shingles vaccine.
Get well soon
Thanks. I am doing fine now.
Thanks for making such a powerful case. Hopefully someone can work out how to wake the OPCs up. Get well soon!
Please make a video on Dr. Brooke Goldner's diet too. Thank you very much.
Thanks for the suggestion. I am familiar with her.
Any information on taking phytase?
Hi from Israel thanks for the update information always learn alot from you in order to help my daughter hopping to have a cure...
I'm anticipating your new video.
I need to know if you have seen laryngospasm as I have brief spasms only during inhaling which began a year ago and six months ago became more prevalent and now occur daily.
I had my briumvi loading dose yesterday and told my neurologist about this inhaling spasm and he ordered a laryngoscopy as I do have dysphagia and even if I'm not swallowing food or water but they seem to also feel like carotid and jugular spasms no fun.
I also got my MRV results as I have no headache hx but endured a Thunderclap Headache last November and I didn't ask him about my report because I do see him the first week of May but it seems I might need a shunt or stint if I'm understanding the report and that IIH which I'm not sure would be idiopathic if it is structural or a vasospasm...
The good news is I can now report for others what the loading dose of Briumvi felt like for me and so far the day after.
Meanwhile I do hope you are making a full recovery so we can not just take credit when others find the cure but when you do... then naturally I'll take credit 😆 🤣 😂
P.S. I found videos on CZcams just now finally.
I've been trying to hear anyone else describe or make the sound trying to learn ahead of my laryngoscopy and I only found laryngospasm.
However in those videos they weren't making correlations to neuromuscular or neurological issues and I think they're wrong.
I don't have acid reflux and if anxiety were cause that would be unlikely at my age as I've had anxiety since my first decade.
Now that I just turned 937 and believe me... (that was a lot of candles) but...everyone at the cake bonfire had a great time even though the cake had a charcoal crunch topping instead of plain old boring frosting.
It was nearly the same as a roasted marshmallow or magma, same difference and once we could eat it safely it was indeed a couture experience.
What I found for laryngospasm so far here are 3 videos with imaging and sound.
The inhaling sounds were partially the correct sound but the duration isn't the same and it doesn't occur when I exhale at all which is good I hope.
Those I found demonstrated a far longer sound and duration with scope imaging and those people were extra scared because they were experiencing both inhaling and exhaling and were rightfully terrified they'd not make it through nor do others who witness and hear them and I feel compassion for them with all my heart, but I do not think medicine is doing those patients justice as they truly must be neurological or neuromuscular and not related to GERD etc.
I was surprised I did not find a single neurologist on the topic so I would love to hear your experience with this very much.
My occurrences do worry me because they have rapidly gone from beginning a year ago ( I'm able to ask my daughter how she is hearing it occur) as to when it began when it occurred more frequently (which I've been told was about 6 months ago) and at what point did it begin occurring daily such as now... no one it seems pays more attention than ones child.
I'm sure you'll know what it is if not a brief laryngospasm.... but I only worry as both CVID and MS can cause the D word with respiratory complications...
I probably repeated myself in words here...I do pray you'll see this topic 🙏.
I know it won't just be me who's curious and so far I'm not thrilled with how little I can find to compare and those I have found I feel are wrong in their beliefs as to what causes laryngospasm.
They don't get a gold foil star next to their name.
It isn't stridor and I don't think it is a bronchial spasm either.
I only told my neurologist yesterday during my infusion because I forgot to mention it at all on my first visit with him, as he is new to me and I'm new to him as of January 2024.
I told him yesterday though 😢😢along with edema and neurogenic bladder questions which he explained so my list is growing for great videos...
So yes, he's ordered the laryngoscopy and I forgot the medicine for NB because 😢 after 9 years, Lasix is not behaving the same as of one week ago and suddenly the edema (which people should know is everywhere in our bodies just more obvious to see in our appendages) has become very shocking in my feet.
The great news is he will be tuning in to your CZcams and we'll both get your book.
Oh boy..I should end my soliloquy here haha, sorry about that but I really hope I'm not the only one who wants to find out what on earth this is because I refuse to believe it has any other cause beyond neurological and part of racing tu the cure is most certainly playing whack a mole with misleading information and outright falsehoods.
Oh yes and Briumvi Infusion is an entirely different creature than my typical every 4 week IVIG for CVID and I would only share that here with your blessing- thank you and get well soon! As you tell your patients and viewers I'll remind you hydration, hydration, hydration!
My doctor friend died from cerebral haemorrhage 'caused' by AHSCT-related thrombocytopoenia.
But forgive my ignorance: isn't the goal of AHSCT nothing to do with repairing the demyelination, but entirely to do with replenishing the haemopoietic capacity of the body after it is deliberately ablated by the chemotherapeutics used to destroy the T&B cells responsible for acute damage and immune memory?
I'm very sorry to hear about your friend. No doubt this is a very rare complication of HSCT. You are correct about the mechanisms of action of HSCT.
I had undergone Stem Cell infusion twice, had other benefits like fatigue, but no change in disability progression
If relevant, can you do a video on "Treating MS with CRISPR gene editing" Could gather limited information only, may be you can give your educated opinions on availability of clinical treatments
Thanks
Excellent video, thank you - and I hope you soon feel better.
What about doing an interview with Selma Blair for a future video?
Or the risks of AI Neurologists, perhaps!!
Thanks for the suggestions, though I would have no way to reach out to Selma Blair.
@@DrBrandonBeaber
She always comes across as wanting to support people and raise awareness - I thought it would be a great/helpful video, but understood 👍🙂
Adding one more inquiry: Now that fecal microbial transplants are approved by the FDA for candida overgrowth, any chance they could be used clinically “off label” to treat MS? Seems like that may be one way to reset the immune system. The key I believe is finding a proper donor with similar environmental factors (family member, etc…). If not FMT, perhaps more personalized probiotics? Since we know Ocrevus is not safe long term (plasma cell depletion), I’m searching for other options. Thank you
I have a video on this topic: czcams.com/video/JEgtVdF5gvs/video.html It would have to be proven in a randomized trial (still pending).
Thank you. Just watched the FMT video. Very interesting (read all the comments of course). Pathologist Dr. Alan McDonald reportedly found novel tapeworm larvae in all ten of the MS brains he studied. The larvae were only visible by microscope. The paper and slides of the parasites are available online to view. He is retired now, but would it be possible to discuss this with him on your channel? The fact that these were previously undiscovered parasites may explain why there is no other data available. This would explain many aspects of MS such as paravenular (spelling?) inflammation, as well as high lactic acid build up. Thank you!!
I don’t view this as a downer, it’s important to spread the true science. Pneumonia is horrible, I wish you a smooth and speedy recovery.
Do you have a video about hsct? I can't find the video
I have a whole playlist (16 videos) on the topic: czcams.com/play/PLjSA4_62xGprkLNhTcdz5XprqPp7waOwy.html
Thank you for the video. I wonder, do spouses of MS patients have a greater occurrence of having MS than the general population (any data on that)? Thank you. Get well soon
Yes there is data. Spouses of people with MS are not at increased risk (unless the couple met because they both have MS).
Thank you sir for the reply.
Love the honesty 💕 thx
metformin ,clemastine , and other drugs
Doc, I saw some small trials using umbilical cord stem cells and it turned out that people who had Edss up to 4 lowered their scores to 0-2. How is this possible?
citation?
@@ernietollar407 I can’t give you the link. YT doesn’t allow them. You can easily google it. It’s easy to find.
If you have a citation, I will take a look. Of course, as I suggest in the video, I think the results in an open label study will be very different from a blinded randomized trial.
EDS? As in, Ehlers Danlos Syndrome? Hypermobility?
I sorta believed in those, but didn't have the money. To be honest, never put much thought... Get well soon.
I got MSCT at Hope Biosciences in Houston, TX, and it did nothing for my PPMS disability. I got 100 million cells intrathecally and 100 million intravenoisly.
Big waste of money.
Thanks for sharing. Sorry you didn't have better results.
@@DrBrandonBeaber
Thank you, doctor. I had a terrible headache for 2 days after the injection, and a couple of months later, I developed trigeminal neuralgia, which may be a coincidence, since I do have a few new lesions, and my MRI showed no vascular compression of my trigeminal nerve root.
Still, I wonder if an injection of 100 million stem cells into my cerebrospinal fluid could make a blood vessel push against the nerve root. I'm leaning towards it being an MS-caused lesion on the nerve root. Luckily, the painful shocks stopped, came back after a year, and seem to have subsided again.
Either way, like you, I also wondered how stem cells would know where to go and how to differentiate into new oligodendrocytes. Apparently, they don't, and my basic skepticism was correct.
@@DrBrandonBeaber
Oh, and feel better!
Could stem cells create remyelinating oligodendrocytes?
Potentially, yes, but differentiation into oligodendrocytes is a complicated, regulated process. Presumably, they would have to be specifically modified and programmed to do this. Otherwise, they might have an equal change of differentiating into teeth or livers.
@@DrBrandonBeaber Even such remote possibilities gives hope so thank you and feel well soon.
I am waiting for results about phase 3 of CNM AU8. We will win this race❤
Studying naturopathy, I discovered vitamin B12 deficiency can mimic MS and cause demyelination. A nutritionist friend with MS agreed B12 injections are highly beneficial for MS.
I have a video on b12 deficiency and associated neurological diseases here: czcams.com/video/OPHWGDIGDLw/video.html
Dr Beaber, would you please disambiguate ( that is clear) but my question is :
what is Dr. Burt looking at in (new) areas of Pluripotent Stem Cell research?. .. or are you stating that Pluripotent Stem research which Burt is doing looks futile for MS? What is Burt's NEWER interest in?
opinion: with great respect Dr. Beaber the 'hopeful' part ( in AI) seems baselessly over hyped - not just in the extent to which it can be used ( I don't doubt it to be very great in its area), but don't see it doing well 'out of its lane'
A thought: while I always appreciate an expert's scientific logic even if it quells dubious hope. But a strong argument based on blood brain barriers doesn't cover yet unimagined modes of action. (Are most previously unimaginable discoveries not happy accidents.)
As they say at the fairground games for prizes 'ya don't win if ya don't play' :)
Have a happy day and recover (in that order) from pneumonia good Dr. Beaber
I don't know the technical details of Dr. Burt's new research. Unfortunately, unless he is able to address some of the problems I describe in this video, I don't think he will be successful. I think making this type of treatment work would be extremely difficult, though not necessarily impossible.
I worry as rare early sign but my child has Erythromelalgia and at least I'll be aggressively watching her... unlike my battle of decades to find the good doctors...
High five on repair and bypass i thought it right before you said it. That's the ticket indeed and we'll achieve that if Elon will share his facilities and innovations at NL with these most realistic ideas.
I fully agree with you.
I know folks who have tried stem cell for MS. They are worse off than before they started.
“Stem Cells” is so vague - I’m not trying to be rude…But if we don’t know what kind of cells they got, we can’t really make determination…Or, did everybody you know get the same kind or did they get different kinds?
People are doing all kinds of stuff with “stem cells”… Some of it is really experimental…Are people using their own cells or cells from someone else?
I would guess you know people who did not get umbilical because it’s way harder to get those here and less people are offering that as a treatment plus it’s wicked expensive…Maybe I’m wrong?
But knowing what kind of a treatment they got is absolutely essential for the conversation, and I say this to you as a patient myself who is also a clinician/scientist. ❤
Well, this should make big pharma happy.
Not everything is a conspiracy. Would encourage you to increase your media and scientific literacy
@Elem70 The fact that you think I should expand my media platform tells me a lot about you. You probably would be surprised to know my scientific background. I do think big pharma has an agenda when it comes to making money. I also think there are genuine individuals who are a part of big pharma who want to help people. My comment is my opinion. Sometimes people's opinions form due to hardship. You should be more compassionate.
You are not to synical, we have only known about ms since 1836. Even after first describin MS, up untill 1971 we did not have a good way of diagnosing or displaying it pre death. Up until 1993 there were not a lot of good treatments for MS (if any). The understanding of and treatment of MS is still evolving. While some new ideas may not pan out they are still helpful in so much as they can guide us to were we ought to go. Perhaps feeding all of our data into a robust AI will provide us with a new and safer treatment, and eventually a cure.
I am definitely interested to see how AI will influence medicine in the future.
Treatments are biased towards complaining.... failure.....
What do you mean?
You are great. Thank you for these very clear explanations. Get well soon doc. PS it'll be impossible for AI to substitute you. AI doesn't have empathy!!!
You may be wrong about this. Some studies suggest AI has superior empathy to doctors. ;) Who knows what AI will be capable of this in the future.
I have been stable since my last stem cell transplant, and had a huge improvement in symptoms. I got umbilical stem cells.
Exactly! Umbilical is the only kind worth it from what I’ve been learning…Did you do this in the United States? I would love to know where you went for yours! I hope you continue to improve! ❤
@@ciarasullivan1379 I went to DVC stem in Cayman Islands. I had a great experience. I'm going for another transplant in Mexico (heavily researched the docs & labs) in hopes of seeing even more improvement. My first transplant took me from 20% to about 50%. I'm hoping this next one brings me back to a point where I can work a normal job. And thank you
kristine where did you have this done? What type of MS do you have?
DVC stem in cayman islands, and I have RRMS. I was later diagnosed with Lyme + coinfections, and since treating those, my symptoms have also improved.
@@pattischmitz2680
Implants doctor.
That's how we should deliver new therapies.
Better be informed, than wasting money on promises of a miracle cure.
Briumvi isn't at all a me too drug..
It is a drug used in several forms of Leukemia and lymphoma and my diagnosis was delayed by obtuse physicians who have my brain damage on their hands... it's hard when you're smarter than those you go to for help....
I'm all for the genetic studies and future drugs that will alter our DNA even if it is to stop hereditary disease but I hope I'm witnessing science going in this direction.
The term "me too" refers to a "copy cat" drug in the same class as an existing drug for the condition. The MS drugs rituximab, ocrevus, and kesimpta also deplete b cells. This is in opposition to an innovative drug with a unique mechanism of action (some examples in MS include betaseron, novantrone, tysabri, tecfidera, gilenya, etc).
@@DrBrandonBeaber yes I fully understand but Briumvi (a "mab") attaches to the B cell in two locations so it is not merely about class and obviously I will be a test subject just as those before me when they had the newest therapy etc.
For God's sake they had no options so shortly ago as the 90's which is absurd but it mostly effects women so we all know why the advance has been less important despite the fact that it takes women to bring new people to the earth.
Anyway more importantly apart from you replying instead of resting yourself and healing...a stubborn genius rarely rests...
Is that your vision and your way of thinking is exactly what I believe.
I've not tuned into enough of your videos but there's always a time and a place and long before the middle of this lecture I found my mind was going dead center to where you concluded so the only next question is...
How do we create the bridge and the programming to activate or regrow (a nod to Frankenstein and electricity).?
I've already been thinking about that knowing I would hail your reply.
Think of how we do RFA .... now drill small holes in the skull and deliver "X" with a biologic apoxy as the method of intracranial delivery backs out.
The skull stays open to prevent swelling, then closure and suddenly we have an entire new direction and..I jump to?
You will develop this and you will lead the way to the cure. Your legacy.
Introducing your destiny.. that's the only reason I commented.. normally I prefer looking in from the fray...
Rest.
I'm sure we will meet again.
@@tuesdayafternoon13 I probably won't invent the cure to MS, but I'll be sure to take the credit for it if someone else does ;)
Have some oscillococcinum delivered to you for comfort and get well. You'll risk relapse if you refuse to rest yourself... animals do it but we're stubborn huh 😆 🤣 😂
Prayers for you good doctor. You must not abuse yourself. We need you.
Sadly, it’s clear from this video that you’re very uninformed about the current state of research and understanding about stem cells. Not all stem cells are the same - there are various sources (alleogenic vs autologous to start, then bone marrow, fat-tissue, teeth, embryonic, fetal, placenta, umbilical cord blood, umbilical cord tissue, etc), which all affects the viability and potential side-effects.
I’ve left several comments with some studies referencing questions and claims you’ve made.
Unfortunately, you are correct on one thing. There haven’t yet been any major randomized-controlled trials, which I would LOVE to see. But who’s gonna fund that when doctors like yourself keep going around making claims that stem cell treatments are worthless and dangerous, when there is actual literature proving otherwise, and instead you all keep endorsing the drug companies.
It’s also so strange to me that you’ve insinuated that patient success stories are due to placebo effect, simply based on the fact that they’ve spent large amounts of time and money to receive these treatments. Shame on you. I won’t even bother to share my mother’s success story with you.
Seems like he is confused and very biased.
Yes its the tone, clemastine levels to take are heavy, metformine no results, what els can we do, accept heavy and expensive DMT's and hope for something new? No. With aHSCT at least you halt progression (new) and live a life, with DMT's the side effects are so heavy you will suffer. Its an easy choice, or simply said no alternative.
I thought this was a great video and quite helpful. He doesn't seem confused at all. Were you able to understand he was not talking about aHSCT? From your comments I don't think the full scope got through to you, but I could be wrong. I'm really happy with my highly effective DMT, it's been working better than I had expected and with no side effects. I would love to take aHSCT in several years if it's still as promising, but I'd be more than happy to still take a DMT after, just in case. We are extremely lucky science has this medicine for us now. I wish my family member had it 60 years ago... Her life might have had so much more joy.
@@stevenveldstra
HSCT is not effective for Progressive MS.
@@demoskunk have a link to data showing this?
The title of your presentation is very misleading. So much so that initially you go to an explanation that AHSCT is not a stem cell treatment.
The goal of AHSCT is to stop progression which it does proven by Dr. Burt in randomized controlled trials.
But no money to be made so gets very little promotion.
Please don’t add to the misinformation.
It is very common for people to [erroneously] believe that HSCT is a stem cell treatment which is the reason for the clarification at the beginning of the video.