Stem Cell Therapy Roll Call - Have you had Stem Cell Therapy

Discuss stem cells, adult and embryonic, and their therapeutic potential for MS here.

Stem Cell Therapy Roll Call - Have you had Stem Cell Therapy

Postby notasperfectasyou » Wed Jan 04, 2017 7:32 pm

I have spent a couple weeks on the internet trying to find folks who have had stem cell therapy .... and I must not be very good at it. So, I thought I'd ask here at my MS Info Home, TIMS. If you have had stem cell therapy, could you let me and others know:

1) What kind of stem cell therapy did you have?
2) Which medical provider/doctor/center/university did you get treatment at?
3) Can you share contact information for that doctor/facility?
4) What country was the work done in?
5) Was the intervention successful, not successful?

Thanks in advance. Ken
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Re: Stem Cell Therapy Roll Call - Have you had Stem Cell The

Postby Jakecscott21 » Sun Jan 08, 2017 8:56 pm

Ken I am hoping you had some luck finding some people who can give you some testimony's on their experiences. I am scaling the internet looking for people who can give me some feed back on the stem sell treatment and operation. Specifically at the Stem Cell Institute In Panama City, Panama. Any information you could share or any ideas I would be forever thankful. I will let you know as well if I have any luck with my other inquiries.
Good Luck
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Re: Stem Cell Therapy Roll Call - Have you had Stem Cell The

Postby NHE » Sun Jan 08, 2017 11:16 pm

notasperfectasyou wrote:I have spent a couple weeks on the internet trying to find folks who have had stem cell therapy .... and I must not be very good at it. So, I thought I'd ask here at my MS Info Home, TIMS.


SammyJo had stem cell treatment.

SammyJo wrote:I have improved many of these symptoms myself with various alternative treatments I've done (LDN, cannabis oil, CCSVI tx, stem cells, ketogenic diet, mythelation/nutrigenomics). Some gave me amazing recovery then faded, but much has lasted, especially after stem cells. Still in a wheelchair, but I've been on a remission streak since May 2014, heat tolerance to 85 F, can sweat again, able to exercise, can get out of my wheelchair and walk on occasion especially on a niacin flush. Don't feel sick and miserable anymore, fatigue is down, but when I stand the orthostatic hypertension is very limiting.


So has George Goss. georgegoss-u9265-posts.html

I hope that helps. There may have been more, but that's what I remember right now.

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Re: Stem Cell Therapy Roll Call - Have you had Stem Cell The

Postby notasperfectasyou » Mon Jan 09, 2017 8:11 pm

Thanks NHE, do we know what type of stem cells this treatment was?

Jake, Some luck finding HSCT patients at GoFundMe. I have not written any yet, because I'm mostly interested in MSCT. The best lead I have so far on MSCT is Celltex. What I really need is 15 minutes with Kim's Neuro to get some direction on this. I'm mostly spinning my wheels right now.
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Re: Stem Cell Therapy Roll Call - Have you had Stem Cell The

Postby NHE » Mon Jan 09, 2017 11:39 pm

notasperfectasyou wrote:Thanks NHE, do we know what type of stem cells this treatment was?

George Gross had HSCT and I believe SammyJo had MSCT.
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Re: Stem Cell Therapy Roll Call - Have you had Stem Cell The

Postby HUD45 » Thu Jan 12, 2017 8:00 am

Well, I will step up here.

I had non myeloblative HSCT in 2011 under the guidance of Dr Shimon Slavin at CTCI in Israel.

To keep it short the initial effects of the transplant were stopping progression for about 9 months. I started to progress and discussed it with the team at CTCI. After deliberation, I decided to undergo a second transplant in 2012, an allogenic transplant from my brother. This was extremely rare as by my count at the time, less than 5 for ms performed at the time in the world. The effects lasted longer this time, maybe 15 months or so but I started to progress again.

I have been through the wringer and I have no regrets, except the hole in my wallet. I had to try and did so.

CTCI has since been closed down, I have had no side effects from the treatment except changing hair color similar to my brother's.

I am a PPMS er and believe in the HSCT still, just maybe in RRMS and or proven inflammatory cases....The anecdotal evidence is in....It works, just not for everyone.

There are failures out there and I am one of them. No regrets

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Re: Stem Cell Therapy Roll Call - Have you had Stem Cell The

Postby ElliotB » Thu Jan 12, 2017 3:07 pm

"It works, just not for everyone."

IMHO, if it really worked, wouldn't it work for everyone?

(I looked into doing this treatment a few years ago, and like so many other alleged 'cures', "it works, just not for everyone", so I came to the conclusion that it likely does not necessarily work and decided against doing it.
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Re: Stem Cell Therapy Roll Call - Have you had Stem Cell The

Postby notasperfectasyou » Thu Jan 12, 2017 8:29 pm

Hi HUD, thanks for posting. How did you find the center in Israel and do you know of other places on the internet that are good for finding folks who have had stem cell for MS? I was wondering if your HSCT procedure involved chemo.

Elliott, I hear you, but here's the thing ... MS is believed to be an autoimmune condition wherein the immune system attacks the the myelin that protects the central nervous system. Key word here is "believed". We all know that the cause of MS is unknown. Given that, my belief is that MS is really several conditions that share similar pathology. This idea would explain why some people do really well on some therapies and others do not. There are a number of folks out there who believe they have been "cured" of MS. I'm not doubting any of them, I am saying that everyone with MS may not have the identical condition. Ken
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Re: Stem Cell Therapy Roll Call - Have you had Stem Cell The

Postby HUD45 » Fri Jan 13, 2017 7:51 am

ElliotB wrote:"It works, just not for everyone."

IMHO, if it really worked, wouldn't it work for everyone?

(I looked into doing this treatment a few years ago, and like so many other alleged 'cures', "it works, just not for everyone", so I came to the conclusion that it likely does not necessarily work and decided against doing it.



Elliott, I wish life was that simple. Especially in medicine, what may work for one may not work for another. Especially in MS there are clear differences in aggressiveness, severity of symptoms, inflammation, lesions on brain and spine.

There are obviously different types of MS....RRMS SPMS PPMS.....and more..... Researchers even debate as to if these "subtypes" are even the same disease. (MS)

In my studies, the HSCT procedure works most effectively and predictably in cases where there is aggressive inflammation.

In my case I have never had brain lesions on MRI, just slight cervical spinal lesions, indicating less inflammation

To answer your question Ken, yes both of my and all HSCT by definition include chemo to ablate the immune system.

Happy to help.....hope to hear from others, HUD
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Re: Stem Cell Therapy Roll Call - Have you had Stem Cell The

Postby HUD45 » Fri Jan 13, 2017 8:02 am

Oh, by the way. I have heard there are support groups both for prospective HSCT MSers and for those who have had failures as well on Facebook......I am not a Facebooker but I guess there is a ton of information and testimonials there for anyone researching HSCT or recovering or have had failure.

Best, HUD
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Re: Stem Cell Therapy Roll Call - Have you had Stem Cell The

Postby ElliotB » Sat Jan 14, 2017 4:32 am

Ken, your explanation is quite plausible.

It is my opinion that typically a bonafide 'cure' of a disease will cure all because it is a true cure.
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Re: Stem Cell Therapy Roll Call - Have you had Stem Cell The

Postby thebattlewalrus » Sun Feb 12, 2017 10:14 am

1) What kind of stem cell therapy did you have? I had non myeloablative autologous HSCT in Aug 2016

2) Which medical provider/doctor/center/university did you get treatment at? Dr. Fedorenko at the A.A. Maximov Hospital

3) Can you share contact information for that doctor/facility? Anastasia Panchenko is the administrator (and a recipient of HSCT for RRMS as well) and she can be contacted at msclerosis@yandex.ru

4) What country was the work done in? Moscow, Russia

5) Was the intervention successful, not successful? I was transplanted in Aug 2016 but had my 6 month neuro evaluation and MRI last week. All is stable and some lesions are slightly smaller.

So far all is good and I am sitting at maybe a 1 EDSS. When I had it done I fit the perfect clinical to have this, early RRMS (only diagnosed officially in late 2015), I am currently 34, and had active disease progression. Didn't fit the clinical trial in the US simply due to not failing a couple DMD's... So far everything is great and I am back trail running, mountain biking, and will be climbing a mountain in a couple months. Everyone that I personally know that has had it done is doing pretty well, it does fail with some people and I don't consider this a cure but to me it has been worth it.
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Re: Stem Cell Therapy Roll Call - Have you had Stem Cell The

Postby David1949 » Wed Feb 15, 2017 6:13 pm

Well I have more of a question than an answer. My wife found some literature regarding stem cell treatments for a variety of problems including MS at a clinic near my house. So I went to a seminar at the clinic tonight. The doctor seemed well informed. He explained how the treatment is done. The stem cells are extracted from the patients own body fat. The fat is collected using a process like liposuction. Then the stem cells are processed from the fat. For MS they inject a drug which opens up the blood brain barrier for about 1/2 hour. During that time they inject the stem cells into a vein and the cells find their way through the BBB and go to the damaged areas. It probably needs to be repeated after about 1 year. I asked if there was any experience with this procedure for PPMS which is the type I have. He said yes but that it works best if its done early. Unfortunately for me I'm about 20 years too late for that. But I also asked if it might delay the progression of disability. In my case he said it probably would not improve my condition much but he was more optimistic that it might slow or stop the progression. The procedure costs about $6500 and insurance doesn't cover it. Follow up treatments cost about $4500.

There were several patients who gave their testimonials and one of them was a woman who had both RRMS and Trigeminal Neuralgia. It helped her enormously for both conditions.

The doctor said the only risk is the cost. If it doesn't work I'm out $6500.

Right now I'm at about EDSS 6.5. I'm not looking forward to the next steps.

I can afford the $6500. So should I give it a try or does it sound too hokey? I'd like to hear what others think.
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Re: Stem Cell Therapy Roll Call - Have you had Stem Cell The

Postby notasperfectasyou » Sun Feb 19, 2017 8:13 pm

David1949 wrote:Well I have more of a question than an answer. My wife found some literature regarding stem cell treatments for a variety of problems including MS at a clinic near my house. So I went to a seminar at the clinic tonight. The doctor seemed well informed. He explained how the treatment is done. The stem cells are extracted from the patients own body fat. The fat is collected using a process like liposuction. Then the stem cells are processed from the fat. For MS they inject a drug which opens up the blood brain barrier for about 1/2 hour. During that time they inject the stem cells into a vein and the cells find their way through the BBB and go to the damaged areas. It probably needs to be repeated after about 1 year. I asked if there was any experience with this procedure for PPMS which is the type I have. He said yes but that it works best if its done early. Unfortunately for me I'm about 20 years too late for that. But I also asked if it might delay the progression of disability. In my case he said it probably would not improve my condition much but he was more optimistic that it might slow or stop the progression. The procedure costs about $6500 and insurance doesn't cover it. Follow up treatments cost about $4500.

There were several patients who gave their testimonials and one of them was a woman who had both RRMS and Trigeminal Neuralgia. It helped her enormously for both conditions.

The doctor said the only risk is the cost. If it doesn't work I'm out $6500.

Right now I'm at about EDSS 6.5. I'm not looking forward to the next steps.

I can afford the $6500. So should I give it a try or does it sound too hokey? I'd like to hear what others think.


Hi David, can you tell us what company this is and where the infusion would be done? Any details would help. If you can provide the contact info for the company, I'll call them and type up my findings here.

I am putting this link here so I can find it again HSCT Hospitals. And this one More HSCT Hospitals

UPDATE:
Northwestern University says they are only accepting RRMS patients.
Karolinska University Hospital says they are only accepting RRMS patients
Clinica Ruiz says they are accepting some SPMS and PPMS with EDSS of 7 or less.
Seattle Cancer Care Alliance|Fred Hutchinson Cancer Research Center only accepting RRMS patients
It would be really nice to be able to put links in here

If I have included a bad link, google the word "Scholar", click link for "Google Scholar". Search for the name of the paper and author in Google Scholar.
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