Has anyone here tried stem cell therapy for their MS?

[dogdaddy]

Has anyone here tried stem cell therapy for their MS? What kind did you have?

What were the results?

[greaterexp]

We have had some folks who have undergone the process and who have posted about their experience and results. Just use the "Search My MSAA Community" search box to find posts about it.

[dogdaddy in reply to greaterexp]

Would they be listed under TREATMENTS?

[greaterexp in reply to dogdaddy]

You might try HSCT, stem cell, etc.

[Fancy1959]

Dogdaddy, it's Fancy1959, first I would like to welcome you to our standard family since I don't believe we've spoken before. You have found a safe place to, ask questions, like you just did, voice concerns, or simply speak to others really understand you'll soon find out how caring and compassionate and insightful the members of our family are.

As greaterexp stated we have had one or two members over the years try the process of undergoing stem cell therapy. What you need to consider is advice especially from your neurologist. Ask him or her about stem cell therapy and get their recommendations. Personally I have heard the cost is rather High running any place between 50 and 100000 and sometimes more. To top this off there far no guarantees that after you spend that type of money that you see any positive results. Another consideration is that this entire process is still in the developmental stage and upon occasion bad results do happen including death. I question my long-term neurologist about it and he was a firm believer in not at this point in its development getting anywhere near stem cell therapy centers in both Canada and Mexico. There are additional centers also in different areas of Europe. There continues to be a massive amount of research in this area and hopefully sometime in the next year or two this therapy will be safer, more readily available, and financially more affordable to everyone across the globe. I hope this helps. And I also wish I had more positive information to give you but this time I'm unaware of any of it. I'm glad you joined our family and please remember that together we are stronger! Fancy.

[dogdaddy in reply to Fancy1959]

Thank you for the welcome...My neuro is all for me getting stem cell treatment but he wants me to use Dr Bert in Chicago but there are no NIH trials that Bert is involved in,although Bert has had great success with his methods , it involves chemo which my neuro doesn't think I need and the cost is 100K...I found a place in Florida who offers umbilical cord stem cell treatment which is only 11K but my neuro is against getting stem cells that are not part of trial. At this point I am willing to try anything to alleviate my progressive MS

[jimeka in reply to dogdaddy]

The Mayo clinic do it. They harvest cells out of your stomach and then infuse I think 3 x . I heard someone say that it works well but it maybe a yearly thing. If you go on Lexarsets posts, it will explain more. The type they have here in the uk is the chemo, you loose all your hair, immunity, you are isolated for around 17 weeks as you cannot risk any type of infection. I do not know what results they have. Blessings Jimeka 🦋

[Oneson in reply to jimeka]

I can't find those posts

[kdali in reply to dogdaddy]

I thought chemo was necessary to turn off autoimmunity, otherwise the new stem cells eventually suffer the same fate as the old ones?

[dogdaddy in reply to kdali]

Chemo is a deadly poison I'd rather not poison my body to get it healthy again!!!

[kdali]

Yes, Rich from NJ had it done in Mexico and was doing great after 1 year. I believe his first improvements were heat tolerance and ability to run again. I don't see his name on here right now to tag him, but I bet you can find his old posts of you search.

[Kitsey]

Hi! I will be receiving stem cell therapy soon. There is no chemo involved. It’s the only current FDA approved trial. The trial is being conducted at the Tisch MS Research Center of NY. The first phase showed good results. I wish you the best of luck and pray for the best results possible for you.

[dogdaddy in reply to Kitsey]

Yes I applied for that study, and got this reply

Hi Denise,

Currently, we are overwhelmed with interest in our trial. However, we are still

waiting for funding to be secured.

We are not actively recruiting patients for our study outside of our clinical

affiliate, the IMSMP, at this time. Our goal is for the trial to lead to an FDA

approved treatment for MS and one day be available to people with MS from

Centers all over the world.

Thank you,

Beth Levine, RN, BA, BSN

Clinical Trials Manager

521 West 57th Street, 4th Floor

New York, NY 10019

Tel: [phone]

Fax: [phone]

[Oneson in reply to dogdaddy]

I saw a doctor there for 14 years + still could not be part of that trial. You are in good company.

[dogdaddy in reply to Oneson]

That really sucks. You'd think you'd be one of first to qualify

[kdali in reply to dogdaddy]

I read this as “we are handpicking those we think will make the study a success”.

[dogdaddy in reply to kdali]

Exactly, when they should be picking those who's disease is progressing rapidly before it's too late...but they don't care about saving us ...just good study outcomes!!!!

[TracyBelle in reply to dogdaddy]

The study should include ALL stages and levels of MS, to find out how many patients could be potentially helped. With all of the MS fundraising it seems absurd to have something SO IMPORTANT that can’t be studied due to insufficient funds. If only Big Pharma would donate $ equal to what was spent on TV Commercials for Tecfidera or whatever it was they advertised nonstop for a year. Those commercials ran during the Super Bowl, so they spent mega millions. All wasted on National TV Commercials for a disease claimed to only affect 400,000 people with MS in the US.

[dogdaddy in reply to TracyBelle]

EXACTLY which is why I don't trust big pharma's MS meds because they aren't trying to find a CURE. They would loose all that money they make off of all of us with MS and so would the societies set up to take advantage of us also.....who would need them if a CURE WAS FOUND!!!! I believe if all of these entities worked honestly on behalf of the patients they'd have a cure....but I am not holding my breath!

[TracyBelle in reply to dogdaddy]

I have always said that they aren’t looking for a cure, just the next potentially deadly but New and expensive TREATMENT. There is research towards demyelination medications, but NO research on stopping demyelination.

I always wonder what the money raised by Muckfest, Bikems, and swim for MS goes to. Maybe an annual report on what was raised and how it was spent would ease my skepticism. I personally have never received any benefit from MSAA other than cooling bands. I joined in 1999. This chat is relatively new compared to how long the internet has been around. I was researching MS in the middle of the night back then on dial up internet. Before DSL.

It is hard for me not to voice my feelings when newly diagnosed people ask about a cure. I believed that there was a cure within the next 5 years in 1999.

[dogdaddy in reply to TracyBelle]

MSAA did pay for my last MRI because I don't have insurance and they provide cooling equipment so I will let MSAA off the hook but the rest of the orgs don't do much with all that money they raise. They should be putting $$$$ into remyelination research and trials that's for sure!!!!! And stem cell research is showing the best results so they should be piling $$$$ into research on stem cells also but they aren't interested in that because they can't patent stem cells!!!

[Kitsey]

I do know that funding has not been completed as of 5/12 when I was in the office. It’s amazing how much money is needed. I hope you will be able to participate.

[dogdaddy]

No I won't be able to participate because they are not accepting people outside of IMSMP whatever that means...I may be dead by 2022 when this trial completes...The NIH should be doing more for people with extreme cases of MS...some of us don't have time to wait many years for the NIH to do these trials!!!!

[Oneson in reply to dogdaddy]

I also have a very aggressive progressive MS. I am currently in a nursing home because of this. I'm sure I will be gone if anything comes out the stem cell study.

[livewell2 in reply to Oneson]

Not sure if I heard this correctly yet or if it would apply to us MSers, but what I heard is that Pres Trump just signed a bill that those who had tried everything medically approved (fda) and if that everything was not working, then we should not be denied access to drugs and treatment that are in trial periods awaiting fda approval. Our Hail Mary if you will.

Anyone have any more clarification on this?

[Oneson in reply to livewell2]

If that's true then yay!

[dogdaddy in reply to Oneson]

It is true

But $$$$ is still an issue

[dogdaddy in reply to livewell2]

Yes it's true. Trump signed the Right to try bill into law but at the same time the FDA is trying to b lock us from our own stem cells

usstemcellclinic.com/fda-re...

[dogdaddy in reply to Oneson]

I'm so sorry to hear this oneson. nursing homes suck. They placed me in one right after my initial diagnosis and 2 months in the hospital and it was the worst nursing home. I had my husband break me out after 3 days and have been home ever since. That was 6 yrs ago .

[Oneson in reply to dogdaddy]

Yeah. It's inhumane.

[Newfound in reply to dogdaddy]

I joined the IMSMP a few months back, and went to NY to hear more about the trial and see whether they would consider accepting me into the trial. First the trial is not a cure, there is no chemo, you have to be on a DMD for at least 6 months, and you must have been diagnosed within the last 20 years. I failed because I have had MS for over 40 years, and I am not on any DMD (SPMS non-active). The benefits of the trial if it works and you are not assigned the placebo, appears to be better walking and bladder function. I personally would take any benefit to help until fingers crossed a cure could be found. There is another company that is doing a similar trial for SPMS, Brainstorm Cell Therapeutics. It’s a tiny trial but a beginning. HSCT is different, it is similar to stem cell transplant for leukemia, where stem cells are harvested, chemo is done and then stem cells are re-infused. This reboots the immune system. This is done in a trial by Dr.Burt in Chicago, in Mexico, Russia, Canada , and a few other countries. If you have RRMS in most cases it will put you into remission and most of your disability may disappear. Of course there are risks, but it can be amazing. Recently more insurances will cover parts of it, when compared to the cost of DMD’s over a lifetime, but not all.

I hope this answers some of your questions.

[Kitsey]

I absolutely agree that more should be done. I wish I knew how to make that happen. I hope you will find an appropriate trial in which you can participate and get great results.

[dogdaddy in reply to Kitsey]

This the only NIH trial scheduled,