Stem Cell Treatment

[nicoly3467]

Has anyone done Stem cell treatment for their MS and had success in reduction of their daily symptoms and/or delaying disease progression more? If you have any info on this treatment, I’d greatly appreciate it. I know it’s not approved in the US, and is very expensive too. It’s currently avail in Mexico at one certified medical clinic I heard of (not sure on trustworthiness of this?) and in Europe. I’m thinking about this Tx, because I’ve been on 5 DMT’s to date and presently suffering with a relapse that I thought was mild earlier in week. But today, I was at ER again for a Steroid IV drip. I just completed 5 days of Acthar steroid injections (mild form) at home this week, but didn’t help cut down on inflammation as expected. The nerve pain got so extreme last 2 days-felt like someone lit a torch all over my scalp or inside brain-not sure and down my spine. I was crying and crying. Today was the “worst”- Got so weak and in extreme pain and I know now after dealing with relapses so many times-when it gets this bad, it’s time to go to ER. I couldn’t move my legs at ER-from knee to feet were so weak and slightly paralyzed and numb. My Nurse and my hubby had to move my legs over into wheelchair because I didn’t have enough strength to do it. Pretty scary sometimes w/ MS. The paralyzed legs happened to me a few times before-but entire legs in May 2018 and 2 years ago-those relapses were much more severe and took several weeks to over a month to recover and walk steadier. I didn’t recover from last year’s relapse though- I’m mobile with a cane now, but have more challenges. Anyway, after steroid drip-my legs feel stronger tonight and I can walk slowly with walker or cane; I’m so thankful!

I see my Neuro tomorrow. Doc can decide next step to conquer relapse and I’ll ask about Stem Cell Tx too.

Does anyone have an aggressive type of RRMS-like me where you have frequent relapses? I get about 2/ year.

Maybe some of you friends can relate to this below. I’ve been driving down this same rocky road for too long-with same things happening, while being on different treatments (even a few potent infusions). I’m beyond tired of it-actually, down right sick of it and feel like I’m running out of Tx options, because I don’t know what else is left to stop 🛑 or reduce frequent relapses that actually work for me.....

However, through all this chaos and daily struggles I remind myself to keep up my faith & hope. When I feel well enough, I treasure the special moments that day, even if its for 15 minutes, 30 minutes, 1 hour or more-but hope is especially for the bleakest of times (the valleys) to get me through.

There’s always Hope! Stephen Hawkins (Astrophysicist) who had ALS said this and I’ve always liked this.

Thanks, Nikki 🌼

[Frances_B]

I know of a couple of people in my town who had it done by a Dr Fedorenko in Russia. From what I've "heard" on the internet in various forums etc I'd be a bit suspicious about getting it done in India. I think some of the scammers flogging fake HSCT treatments use Indian facilities, and there was an American who claimed to be a Doctor (but he wasn't) who was promoting supposed stem cell treatments (done in India) for huge sums and claiming they could cure all sort of things as well as MS e.g. motor neurone disease (which is definitely not curable yet any more than MS is). The 60 Minutes TV program segment on that scammer showed some film footage where it looked like "CCSVI treatment" was being done at the same time as the supposed HSCT, and that is extremely suspicious. He was taking huge deposits off people and then not delivering any treatments - I think he was calling his scam a "clinical trial". Note - if you have to pay anything to secure a place in or take part in a "clinical trial" then it is NOT a trial, as true clinical trials do not cost patients any money.

I'm not right up to speed on HSCT because I don't need to be (it isn't an option for me) but I understand there are two types - one where they totally obliterate your immune system, and you have to spend weeks in isolation while your immune system rebuilds itself, and another where it is a much milder treatment. I think the death rate for the "stronger" treatment option is still around one person in every 2 or 3 hundred people treated, so it's certainly not something to be taken lightly. I believe that so far research is showing that many people are doing quite well at 5 or 10 years out from the treatment, with better results from the stronger treatment, and also better if treated earlier in their disease course.

Do your homework very thoroughly (and do LOTS of it) before taking the plunge, but some people who have had really "intractable" MS believe it was worth the risks and the costs.

[jimeka in reply to Frances_B]

Good advice 👍

[nicoly3467 in reply to Frances_B]

Hi Frances_B-thanks for all of your detailed information. This is good to know.

[IFwczs in reply to Frances_B]

I am Russian but would rather go to India than Russia for this type of treatment. As a matter of fact, I would go to neither country.

[nicoly3467 in reply to IFwczs]

You are a wealth of information and much appreciated!

[Iona60]

Someone in this forum had it done in at a university in the US and posted about it. Perhaps you can do a search or maybe someone else will remember who it was.

[Jesmcd2 CommunityAmbassador]

Ya know Allen5280 might have info on this? 🤗💕

J🌌

[nicoly3467 in reply to Jesmcd2]

Ok thanks!

[Jesmcd2 CommunityAmbassador in reply to nicoly3467]

Here is a new article about clinical trials on HCST nicoly3467 mymsaa.org/news/new-in-ms-r...

Check it out!🙄 🤗💕

J🌌

[nicoly3467 in reply to Jesmcd2]

Thanks SO much!!!

[greaterexp]

We have a member, 1RiskyRich, who had it done in Mexico. I believe the wait list is long for the Chicago-based clinic. I think the cost for the Chicago clinic is around $100K, but the Mexico clinic is much less. Frances_B gave you great advice. Do your research, but don't just read about testimonials.

I hope you can find something that works well for you, be it stem cells or something else. Would you let us know what you discover? We are cheering for you!

[nicoly3467 in reply to greaterexp]

Wow, that’s crazy expensive!

I guess due to extensiveness of Tx this would not be just a few thousand dollars. I was thinking Hcst was maybe $20-$25 k and hoping insurance still helps with all or some of it. Anyhoo, I’ll do my research in case I ever consider this Tx for the future. Thanks for info! Nikki

[greaterexp in reply to nicoly3467]

I hope I"m wrong, but I have read that because HSCT is considered experimental, insurance won't cover it. It's worth asking, however, since things change!

[Ali_B62]

Wishing you all the best with your next steps and hoping you find something that helps. As others have said, do your research very thoroughly, the world is full of scammers.

[nicoly3467 in reply to Ali_B62]

True!

[IFwczs]

Our member nes78 had it done in Chicago quite successfully. Dr. Burt took her in off trial, and insurance paid.

[nicoly3467 in reply to IFwczs]

Wow that’s awesome! I’m happy to hear it helped her so much.

[Iona60 in reply to nicoly3467]

That's who I was thinking of. She posted a link to a video about her experience. Hopefully, you can search her posts and find it.

[nicoly3467 in reply to Iona60]

Great thanks!

[nes78]

i've had aggressive rr ms since being diagnosed at 23. if i hadn't had hsct 5 years ago i'd still be in a nursing home. i have been on chemo for ms before and it was worked well for me. when i had hsct i had a lot of new activity. want to note i was treated off study at northwestern and medicare and my secondary insurance covered everything. had to borrow money for travel, etc. i have gotten rid of my wheelchair, walker, quad cane, single point. and no dmds anymore! happy to answer questions. it is different for everyone! vimeo.com/130065935

[nicoly3467 in reply to nes78]

Hi Nes78,

Thanks for your reply. This is amazing to hear about the great success you had with Stem Cell Tx. I am so happy for you that you feel much better and are mobile again.

You stated in your reply about the nursing home and hope it’s ok to ask, but were you in a nursing home before Stem cell Tx? Was the Tx painful? How long or often did you have to do Tx?

Thanks for your help in answering my questions and sharing your wonderful experience.

Nikki

[nes78 in reply to nicoly3467]

hi nikki,

i was in and out of nursing homes before the transplant, yes. i was around 34 and neuros were basically saying well, that's aggressive ms, that happens sometimes. after years of having ms w. only invisible symptoms all of a sudden the pain and spasticity was horrible. baclofen did nothing and i could literally not move. so it was basically an issue of quality of life. because i had had years of experience being on chemo and immunosuppreants in addition to dmds for the ms i wasn't worried about the chemo. i was so out of it and in pain i don't remember much except northwestern being the nicest hospital i've ever been to! of course i was in isolation the whole time and basically slept. i left weighing less than 100 pounds. since leaving i haven't had spasticity since! it's different for everyone. it pushed me into menopause. but i would do it again in a heartbeat.

[nicoly3467 in reply to nes78]

What an incredible experience you shared. Thanks for sharing your struggles before Tx and your triumph after stem cell Tx. I’m happy to hear you feel so much better now and I’m sure you’re enjoying your life more too!

[nes78 in reply to nicoly3467]

thanks for asking! i think it's important to people to know about hsct. it might not work but it's a procedure that northwestern has used for other autoimmune diseases too. and for years i was followed by one of the best hospitals in the country, always having really aggressive docs. did anyone suggest hsct? no. it was when there was nothing else and my family came across the study on clinicaltrials.gov i just hate to see people not know all their options or get taken advantage of with so called stem cell therapy.

[nicoly3467 in reply to nes78]

Hi Nes-I have another question re: Stem cell Tx you had done. You stated in earlier post to me that you had new activity after Hcst could u please explain? Not sure if you mean more lesions or ?

Thanks, Nikki

[nes78 in reply to nicoly3467]

hi Nikki,

i have not had any new activity since having hsct 6 years ago. some shrinking of lesions but nothing new. i have had other health issues probably partly due to all the drugs i've been on since dg. at 23. but hsct was great for me and before that chemo and immunosuppressants helped me - i handled those meds. really well. hsct pushed me into menopause at around 34. i have osteoporosis but was told that was because of all the steroids over the years and probably genetics. hsct and ms affect everyone so differently. for me if was an easy decision to make because i had hit a glass ceiling and dr. burt thought i could walk again. but i'm in closed fb hsct groups and there are non-responders. there are people who talk about getting worse. it is so individual. it can be a rollercoaster ride for at the least the first year after transplant. but i was at such a low point going into it i have a different perspective than others.

i hope that was helpful?!

-nadine

[kdali]

If you search posts, in the replies someone mentioned their success from the clinic in Mexico and their FB name. Richyrich or something. He was doing well at 1 yr and we have not heard from him since, but you might have some luck on Facebook.

Mine come about every 8 months and ocrevus has been amazing. I’m heading into my second month off treatment and do not feel impending doom yet.

I hope you find something to sort out your angry immune system!

[nicoly3467 in reply to kdali]

Thanks so much!

[Rascil62]

While at Mayo clinic in 2010 I ran across some research on stem cell treatments treatment at that time it was $30,000...ffit a call from a clinic in Mexico that wokd set me up with fhree million stem cells...for 14 thousand

[Rascil62 in reply to Rascil62]

Tomorrow are the next day

[nicoly3467 in reply to Rascil62]

Hi Rascil62,

So did you do this Stem cell Tx in Mexico or no?