MS Cure ??

[pmbevac]

A friend posted this on Facebook. I'm quite suspicious of claims like this, but always hopeful that something like this is true.

Has anyone heard of this work, or is is all hype & wishful thinking?

theheartysoul.com/cambridge...

[jimeka]

Thank you. Encouraging read. 👍

[RoyceNewton]

Yes I have seen this, interesting article but a long way off I think

[anaishunter]

Always good to hear that many researchers are working on a better approach to care or cure MS. The more, the better

[Frances_B]

As far as I'm concerned it's usually hype until such time as it has gone through at least a Phase 2 clinical trial. Way too much stuff is proclaimed to be the "cure breakthrough" all PwMS have been waiting for and mostly they're just click-bait headlines - so often on sites that may look pretty but are frequently very shallow, despite claims made that they are supposedly promoting an "evidence-based approach towards creating a healthier lifestyle". The "evidence base" is more often than not cherry-picked and lacking substance when you look a bit further. Unfortunate that seems to contribute a lot to all the people who like to tell us that we could fix our MS if we would only do this XYZ thing they read about on the ABC site - and of course we all know that those people who are convinced that we don't actually want to cure our MS do in fact know so much more than we do about it. Me being sarcastic or sceptical - never...................!

[Johngm in reply to Frances_B]

The FDA has not approved stem cell treatment yet and insurance does not pay for it as it is very expensive. I have a friend who went to Russia for stem cell treatment that worked for about a year when MS returned.

[nes78 in reply to Johngm]

i did have hsct at northwestern off study 6 years ago and insurance did pay for it.

[Weldon60]

When I was diagnosed with MS there was no talk of a cure. Over the last five years or so, I have read and heard speakers talk about the cure is in the foreseeable future. I found the article exciting and I look forward to the day that there is a cure.

[Johngm in reply to Weldon60]

Interesting, my doctor thought (14 years ago) a cure was about 5 years away. Keep praying.

[rjoneslaw]

never heard of it

[Jesmcd2 CommunityAmbassador]

After the last month of fighting my own body and mind, and let me tell ya, the later is pretty tricky!👀 I wish there was a cure pmbevac but alas until there is? We deal☺️🤗💕

[pamgarner]

I will keep an open mind..so many "cures" .we can hope

[falalalala]

Interesting

[MarkUpnorth]

I gave up on cures many years ago. But, I do believe 100% that nothing other than a purge of all the chemicals I was taking, for this, and that, and because of that, then this. And honestly sticking to healthy eating, nearly all the time,... no 100% of the time with relapses in weak will, but that that is helping me. Yes, I have a lot. But I'm not picking up more baggage any more, and I'm actually loosing a few pieces of luggage along the way. Even some that multiple doc's told me I never would, never could.

[jackgaume]

I also saw this article and like you I will wait. This "cure" is in the early stages. They have not done human trials yet. Don't hold your breath if this is the real deal it will be years before "we" see it. FDA has to approve it and Big Pharma has to see if they can make money.

[sashaming1]

I'll wait until it becomes more studied with positive MS results and verified by various Neurologists (I think this means a completed Phase ?? study). It's too early for me to tell and it is both hype & wishful thinking at this time. Nano Particles? I'm thinking 7-of-9 stuff.

[Kitsey]

I’m always glad to read about research that is being done around the world. The more researchers, the better chance of finding the cause and then the cure. The Phase 2 Stem Cell Trial at the Tisch MS Research Center in NY will hopefully give even better scientific data than the Phase 1. Even with the great results, it is not categorized as a cure. It has reversed disability which is fabulous!

[Newfound in reply to Kitsey]

The question with Tisch is how long will it be before they get FDA approval. I am a patient of Dr. Stark, and he mentioned that normally you have to go through 2 phase 3 trials with 1000 patients in each. He said that was an impossibility, so will FDA approve without the phase 3 trials??

[Kitsey in reply to Newfound]

I certainly don’t know how the FDA will respond after the Phase 2 Trial is completed. Let’s hope that they will fast-track approval. I believe they have done that with drugs. Are you going to the Symposium in October? I look forward to it every year! Maybe we’ll learn more about the trial’s progress.

[IFwczs]

There are 2 types of stem cell therapy for MS. HSCT for relapsing-remitting has been approved by the FDA (I guess not all cases, but certainly for nes78). The kind for progressive MS (you don't reboot your immune system) is still in clinical trials. Stem cell tourism (Russia, Mexico etc.) is a waste of money.

[Newfound in reply to IFwczs]

If you have RRMS, you can try to get into the HSCT clinical trial in Chicago. Last time I looked into it Chicago was $200,000, and the are very selective about who they will accept. The good news is that some insurers are starting to pay. If not you can not get into Chicago, you can go to Russia or Mexico for the same procedure for approximately 1/4 of the cost. I know lots of people that have successfully gone through the procedure in Russia. Some people enter in wheelchairs, and leave walking. It can be totally amazing.

[IFwczs in reply to Newfound]

Yes, they leave walking. And how long does their walking last? Forever? Exactly. The worst thing you can do to your MS is go to third-world countries, such as Mexico and Russia, for stem cell treatment. Same procedure? I don't think so. Do the RRMS HSCT it in the US or do not engage in stem cell therapy tourism at all.

[IFwczs in reply to Newfound]

Also, I forgot to mention that anyone with money in Russia (or if they don't have it, they borrow) goes to Germany or Israel for any serious surgery or cancer treatment. And Americans go to Russia for stem cell treatment???

[Newfound]

Yes American’s go to Russia, Mexico, Germany, Israel, when they are not accepted in the US. The clinical trials in the US have a very limited scope, so it is difficult to get acceptance, and not everyone’s insurance will cover it. Three years ago the price tag for Chicago was $200k, Russia was $40k. Israel was $150k, but they also required you to bring someone that could help you. Some use go fund me, some hold fundraisers, others may take out loans, but they find a way to try to stave off the beast. I don’t know if anyone here is part of the MS Gym, but Brooke Taylor Slick, who is doing podcasts for the MS Gym, went to Russia a number of years ago to have HSCT. She is one of the many success stories. Are there risks, absolutely, but they were steadily getting worse, and none of their current meds were working, or made them so sick, they had to find an alternative. HSCT is not for everyone, for sure, but it can truly make a difference in how disability progresses.

[pmbevac]

Thank you all for your comments. It gives one lots to think about. For me I’m just happy to stay stable.