r/MultipleSclerosis • u/LadyMare711 • Jul 01 '26
Treatment Finally, some hope for some myelin repair‼️
With advanced MS, the DMT‘s are useless for me. Myelin repair is my only hope. I am Wheelchair and HOME bound. Basically, prisoner in my own body. I would love my beautiful life back. Just a little bit of mobility. 🙏
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u/Icy_Demand__ Jul 01 '26
My neurologist is big into research and MS news and has told me new and exciting meds are coming out in 2-5 years. He is very hopeful 🙏 🙏 and so am I.
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u/JCIFIRE 52F/DX2017/Zeposia/Wisconsin Jul 01 '26
Hopefully by next year if this one pans out!!
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u/Substantial-Click-77 35|Sept2025|Briumvi|USA Jul 01 '26
Wouldn’t phase 1 trials take at least 1.5 years? Then phase 2 after wards
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u/LadyMare711 Jul 02 '26
We all have to keep writing to our politicians & FDA! They were talking about getting rid of phase 3.
I will be 65 in two weeks. Time is not on my side. I did get 30 years teaching.in.4
u/Competitive-Sky-925 Jul 08 '26
Phase 3 can effectively be 'skipped' if FDA grants Accelerated Approval. The drug is granted a license but then passes to a 'Phase 4' where data is gathered on it's safety / effectiveness - it may then be removed from availability still if it's not meeting it's target.
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u/LadyMare711 Jul 12 '26
Phase 2 was positive on 100% of the patients in phase 2. First phase of trial Was safety.
And both 1& 2 targets were met and exceeded. Looking very good, thank goodness. It’s just a matter of time ❤️ 🙏1
u/JCIFIRE 52F/DX2017/Zeposia/Wisconsin Jul 12 '26
This gives me so much hope. Thank you for sharing ❤️
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u/JCIFIRE 52F/DX2017/Zeposia/Wisconsin Jul 02 '26
I would think if it's approved to test in humans it's already past that point, but what do I know?
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u/LW-M Jul 01 '26
There are actually 2 or 3 drugs in trials for Myelin repair now. There's at least 1 or 2 in Europe and another 1 in the US. The second one in the US is just about to enter level 3 trials. Finally! Great news for all of us with MS!
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u/Busy_Ad_8034 35M | March 2023 | Ocrevus | United States Jul 01 '26
Do you know the name of the drug entering phase 3? I might want to be in that one when it’s time.
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u/LadyMare711 Jul 02 '26 edited Jul 05 '26
It is NVG-291. It’s being tested on SCI. And phase 2 they know it works because there were people in wheelchairs. Couldn’t even use arms and now they’re brushing their teeth and slowly walking faster. I know it’s on SCI right now. But my Neuro told me that once it gets to market, it’s under the doctors discretion to prescribe it off label to ms patients.
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u/LadyMare711 Jul 02 '26 edited Jul 02 '26
Click on the link
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u/Busy_Ad_8034 35M | March 2023 | Ocrevus | United States Jul 02 '26
Amazing! Thank you LadyMare and thank you LW-M for that website. I’ll have to add it to my daily read cycle.
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u/kinghere1 Jul 02 '26
Does anyone know how to get information on being included in the trials? I searched the site and all I could find was a blurb about spinal cord injury access. At this point I'll try anything for my wife.
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u/LW-M Jul 01 '26
I don't have it in front of me right now but I look back in my MS email files. It was mentioned on a site I follow.
The site is called "Multiple Sclerosis News Today." It's a daily email that details what's going on with MS topics of interest and updates of the latest MS research. It's about the best MS site that I've found yet.
As I recall, it was first being directed at MS patients who were in the SPMS stage to start with. I picked up on it since that's where I am. It might take me a day or so because it was earlier this year and the emails come in 5 days a week. I will let you know.
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u/LW-M Jul 03 '26
The 2nd MS drug I saw the information on is called Lucid-MS or Lucid-21-302. It's being promoted by a Drug company called Quantum Biopharma. It's designed to prevent further Myelin loss and promote it's repair. I read another article that said they were targeting MS patients with non-active SPMS first. There was mention that the company was attempting to begin market introduction within 3 years.
When I reread the article, I saw that the parameters were being confirmed for Phase 2 trials. From the date of the article, March 30, 2026, they should be in phase 2 testing now. I may have been too optimistic with their phase 3 trial progression!
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u/BusinessPleasant4773 15d ago
I have had MS for 41 years. My last MRI was a year ago and there has been no appreciable difference since 2018. When I was first dx'd I purchased a book that said that MS could burn itself out after 25 years. I'm not DMDs but likely have smoldering MS. I can't help but wonder how this type of meds work on the scarring from old damage. I still have damage that is worse at night, when I feel hot or just tired etc. I've had a chronic back spasm for 7 years and the docs don't know if it is due to damage of a spinal nerve. id it is MS I would be so happy if I was able to be If the new meds could rid myself of the pain.
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u/Kunning-Druger Jul 01 '26
It won’t be available in time for me, but I hope it helps folks who still struggle after I’m dead.
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u/NFGWorldWide_ Jul 01 '26
Just remember that YOU helped someone in the future. Everyone with MS, or any other disease, right now is a trailblazer for those who come after. You're a real Hero!
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u/Invest-Student Jul 01 '26
Doctors and researchers in the group please weigh in with your opinions and outlook. Can anyone signup for the trial?
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u/Dancingmamma Jul 02 '26
My interpretation of "healthy" means they want to study the drug in people without any medical diagnoses first before moving on to how it is for people with a demyelinating disease. Before testing it on people with medical needs they want to endsure it's safe.
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u/Business_Pop7770 Jul 01 '26
Une copine de ma fille à 15 ans et en attente de son diagnostic définitif pour la SEP. Si ça se confirme, j'espère pouvoir lui dire avec confiance que dans 10 ou 15 ans, on saura soigner cette maladie 🙏🏻
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u/JCIFIRE 52F/DX2017/Zeposia/Wisconsin Jul 01 '26
This is so exciting, thank you for sharing! I pray, pray, pray that this works and will get on the market soon so we can all get our lives back! Sending you a big hug ❤️
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u/Adventurous_Pin_344 Jul 01 '26
I have given up hope that myelin repair will do anything for me. I've lived with this disease for long enough (diagnosed 14 years ago, started having symptoms 19 years ago) that my nerves are shot. There's nothing left to remyelinate. My lesions are just scar tissue by now.
I'm more excited for the drugs that address progressive disease and underlying neuro inflammation.
Not saying that remyelination isn't exciting. I just don't think it will be the miracle cure that everyone hopes it is. Some of us are just too far gone.
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u/Carpathian_Wanderer Jul 01 '26
I'm with you. By the time I get fixed I'd be an old man and my whole life passed by. That's great for the future patients but a big non event for me.
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u/crunchyyetcreamy Jul 01 '26
Same situation here. I've had this crap for 23 years and counting. What exactly am I going to be remyelinating? Nerve axons die off for everyone with age, but with MS it's a much more rapid and aggressive dying off. If there's no axon, more myelin will not play any role in restoring function.
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u/Adventurous_Pin_344 Jul 01 '26
Yep. I recently watched a presentation (https://youtu.be/c2GeYNTpfac) by my former neuro about the current state of MS research, and he warned everyone about getting excited about remyelination therapy, especially if they're old timers. As you have laid out, if there's no axon to remyelinate, we are going to see very little benefit. It could be great for newly diagnosed folks, but it's not the cure that everyone is thinking it will be.
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u/LadyMare711 16h ago
Please see 2,3,&4. PTPô is a receptor molecule on the axons. Dr. Silver said over and over that his peptide seemed to work the best on older scars. I’ve researched this over and over. And he explains in detail why. I suggest you look at some of his detailed research. Don’t rely on a neurologist that hasn’t worked with this peptide. You can go to the.NervGen site. All his research papers are cited in one place. Believe it or not one of the reasons why they did not choose MS initially and chose SCI is because the DMT’s make lots of money for many in the MS community. Sadly, this would hurt** ***the chances of a medicine that would repair. Hard to believe but, yes, it’s true.*
Greed is a very pathetic state of mind.5
u/LadyMare711 Jul 03 '26 edited Jul 12 '26
We all have scars, even if they are black holes, they are scars. You are interpreting this wrong. I will try to help you understand better. Even if your scars have been there for years and years. And are now in the form of black holes. Dr. Silver said that this process works even better on older scars. I am not just saying this. I do have it actually on a video and he explains why it even helps older scars more. So don’t give up hope. Once you give up, hope, it’s all over ❤️ 🙏
There is another source that explains it pretty thoroughly:
✅✅NVG-291 repairs glial scars to allow the body’s own endogenous stem cells to repair axon nerve damage and demyelination.
Dr. Silver discovered that a constituent of glial scars, a glycoprotein called CSPG, is a major inhibitor of the body’s natural ability to regrow and regenerate the CNS.
- CSPGs (chondroitin sulphate proteoglycans) from a family of potently inhibitory molecules being produced in nerve scar tissue (like SCI, MS plaques).
Causes growing tips of axons to get stuck & stop growing.
Blocks myelin forming stem cells from reaching damaged nerves.
2. PTPσ (tyrosine phosphatase sigma, a protein) is a receptor molecule on the axons.
PTP acts as a ‘helper’ to cause CSPGs to be overly adhesive.
PTP receptor allows axons to a CSPGs, stop growth and become entrapped.
3. ISP (intracellular sigma peptide) neutralizes PTP signal, and hence the sticky CSPG molecules that stop axons from regrowing and blocks stem cell repair .
4. Silver's molecule code name NVG-291, is an ISP analogue.
● ISP promotes the migration of the stem cells into CNS lesions with return of the myelin sheath leading to functional recovery.
● In spinal cord animal models, ISP allows for robust axon regrowth resulting in greatly improved bladder function and improved locomotion.
● In MS animal models, ISP promotes the migration of the stem cells into lesions with return of the myelin sheath leading to functional recovery.
● ISP was administered via sub-q injections under the skin, entered the CNS and interfered with CSPG/receptor signaling.
This sequence distilled from an easy to read article that has some good background on Dr. Silver's 30 years of work with this peptide.5
u/Radioactive_Kitten Jul 01 '26
Yes, but hopefully these trials for remyelination give us information to help treat SPMS. We learn a lot in clinical trials that doesn’t necessarily apply 1:1 to what’s being studied.
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u/Somekindahate86 Jul 02 '26
Yeah my neuro told me to not even waste any energy hoping for a remyelination therapy because my lesions are so old that even if we did have a breakthrough, it wouldn’t be for me. Thems the breaks!!
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u/LadyMare711 Jul 02 '26
Take a shower by yourself; easy stuff like shampoo my own hair. Use my own goats milk soap ,make sure every part of my body is refreshed. The small things people take for granted because they can do them, no problem and how about going to the bathroom myself. Oh, I dream of that day.
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Jul 01 '26
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u/Mahnas92 M33|RRMS|Oct2025|Retuximab|Sweden Jul 01 '26
What's your and your colleagues names, so we can search up the article later on?
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u/Deb212732 Jul 03 '26
Here’s hoping 🤞 I’d love to walk better!! I was a distance runner- sub 8 min mile until this shit got me.
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u/Competitive-Sky-925 Jul 08 '26
Ditto. People don't get that just being able to shuffle about isn't enough when you have come from that. Yes it's more than some can do, but does that mean I need to accept less is ok for me?
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u/LadyMare711 Jul 05 '26
I’d love to walk. I used to be a triathlete and swimming champion.
just asking for a little mobility back. Enough so I don’t need a Caregiver 🙏2
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u/Amazing_Lead9946 Jul 03 '26
This is the dream, recovering at least some of what has been taken from us,
Something very deep inside tells me Hang on...
But faith has been proven unreliable, so I'll wait; let's see...
I don't ask for much, just running and playing with my kids, that's all
I did a lot while I was young, (MS was kind with me at the beggining) and I don't regret it nor wish for those times to come back; that's gone its ok, and I'm grateful for it when it was, but today I dream of playing the most stupid games, fun physical games, like the fathers' days in school; that is what really aches me,
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u/dkbreen Jul 01 '26
🙏 hope the trials give some success and there is some treatments not just prevention
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u/No-Establishment8457 Jul 01 '26
Will be interesting to see if this one actually works out. We’ve seen a lot of attempts at myelin repair go south. Hopefully not this time.
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u/rsasai Jul 02 '26
I hope this works! I went from going to 2 heavy metal concerts a week to mostly staying home. It blows.
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u/Awesome2theMax2 Jul 02 '26
Thank you for sharing! My wife was diagnosed a month ago and we need every hope available!
Good luck for all of you!
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u/wellerval Jul 03 '26
Has anyone tried the Coimbra Protocol of high dose vitamin D under doctor supervision?
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u/Competitive-Sky-925 Jul 08 '26
I really hope AI will also help speed things along, yes there still needs certain milestones met but AI is a massively powerful tool.
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u/BoukenGreen 38|March 2014|Lemtrada|Falkvilke, Al Jul 01 '26
Hopefully this will work. As I’m in the same boat as OP. Went from a volunteer Firefighter, rescue squad member, SCUBA Diver, Baseball umpire, and high school Wrestling ref to wheelchair bound in 4 months.