Last reply 1 year ago
Stem Cell Treatment AKA Cure??

Hi all.

Very new to this page and would like everyones thoughts on the stem cell treatment that you can have in Mexico and all the other places you can also get it.

Has anyone had it done?

if you had the 60K would you?

I’d like some feedback as its something i am considering and i’d love to hear what you guys think.

(please note i’m not having it because i’m in a wheelchair, i want it so that never has to happen. Also the younger you have it in your MS life the more effective – please don’t judge i don’t just have 60K sat here i will have to raise the money. )

Thank you, Madison xx

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stumbler
1 year ago

Hi @madison-p and welcome.

Stem cell treatment in Mexico is an expensive gamble. But, it was a gamble worth taking for that BBC journalist. Have you checked her story?

It’s a very aggressive treatment, which has it’s own risks. There has been fatalities. But, I suppose the potential rewards can be huge, maybe, and youth is on your side.

It’s a tough call.


madison-p
1 year ago

Thanks for your reply @stumbler

I get where you are coming from and its a massive thing to think about.

Appreciate it.


spunky
1 year ago

I would definitely consider it if and when the time came! I would heavily research the topic and discuss with my MS Neuro and many others before I committed to anything!

Best of luck!


bubblesgalore
1 year ago

i would definitely have it. i would take it before agreeing to meds. this is just a personal opinion.


shazzyp
1 year ago

I know it’s a lot of dosh, but you are still very young, so my advice would be to look into it in depth and then make your decision. Would I do it….probably Yes if I were a hell of a lot younger and got diagnosed this condition. Good LuckX

There are a lot of factors in deciding if to do it or not. My wife was diagnosed last year and we would consider it depending on how things progress. One story to give you a good idea of what you can expect is from Dave, read through his journey and experience. Its very well detailed and will give you an idea of the risks. Its important to remember it wipes out your entire immune system and it needs to be rebuilt.

http://forums.activemsers.org/forumdisplay.php?f=6

Compared to a drug like Tecfidera that keeps just a part of your immune system surpressed, we opted for lifestyle change and Tecfidera. The HSCT proceedure is getting better each year. Its also the case if you have it, you will get it again. A number of people have it return as there is some memory of the diease still though they dont understand why.

Our plan is to see if we can keep the diease from progressing as much as possible and then determine if HSCT is safer and there is more data behind it in a few years.

Given the drugs on the market today its a harder call to justify it still.

If you distrust insurance companies, here is another way to think about it. They are paying about 80K a year for our Tecfidera and its been approved for 5 years already. If HSCT worked well, wouldnt they rather have us spend 100K and be done with it (and at least allow it)? I think they would rather not risk litigation for something that isnt shown to be more effective yet. With that said some insurance companies seem to cover it if you really push.

Anyway thats my current thoughts. Here in the US if you dont have EDSS score of 3.5 or more they wont consider you.


mmhhpp
1 year ago

My personal experience is that because my mri scan showed no active lessions i am not elegible by the Sheffiel (uk) team.

Later on i heard from the Russian team that it does not work for those with no active lessions.

Get all the info you can and analise your situation……

It is a lot of money make sure you fit criteria

All dms drugs eventually fail they dont stop ms so that line is not perfect either……


adamski
1 year ago

Hi @madison-p , any topics about hsct really interest me. Ive done a lot of reading around it, and there are a lot of risks involved but we all have to make decisions in our lives we feel are the best for us. I started a thread about it a while ago to see other peoples thoughts… i don’t seem to be able to post the link, but hopefully you can find it. maybe @stumbler might post the link for me lol.
Read your profile and i can relate around the Copaxone, for me it was three and a half years and i started my Tecfidera journey Good Friday, if the Tec doesn’t work, i know where im heading…
Adam x


stumbler
1 year ago

adamski
1 year ago

@stumbler, thank you sir 👌 😉


tryer8
1 year ago

Well in Australia I’m told it is still “experimental” however as my walking and use of hands (typing and fine motor) becomes more of an issue for me I’m certainly looking at this experiment. If not then I’m wondering how to live a life where you want to be “normal” where you need to work to finance that life and struggle to do that. Tysabari is something I take as well as Fampyra (which costs $200 after tax dollars and is not covered) this seemed to work initially however i’m beginning think it stops being so effective after 12 months or so.

Who to believe when the drug companies have so much invested in ongoing repeated treatments is a real question. A one off treatment – well that would be amazing.


marc_doucett
1 year ago

Hi Maddison-p!

Personally I think that if this treatment is an option, you should go for it. I had my transplant on Feb 3rd. and now am showing ZERO symptoms of MS.

However, the treatment is a brutal ass kicking. The protocol for my treatment consisted of large quantities of chemo drugs, amongst other concoctions, aimed to destroy my diseased immune system.

I ended up spending a total of 7 weeks in the Ottawa General Hospital recovering. You should know that this treatment leaves you immuno compromised for up to a year. This means lifestyle changes, at least on the short term.

Feel free to hit me up with any questions you have….. I’m keen to share my experience.

Marc


madison-p
1 year ago

Thanks to everyone that has taken the time to comment on this!

I really appreciate!!

Marc_doucett that sounds awesome I would love to hear more before I begin raising the funds!

Thank you

Madison

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