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MS Stem Cell Transplant - anyone had one?

I know that a few people have already undergone stem cell transplant treatment, either in the U.K. or self-funded abroad. I wondered if anyone on here has been through it. It’s an option i would consider if it becomes available, and i’m going to discuss it with my consultant, but it would be incredibly useful to hear an account of the reality of stem cell treatment.

Thanks

You will find plenty of anecdotal information on this facebook page. Facebook Groups

Many thanks Whammel

I have, you can check out the blog I posted during treatment on Facebook “Janet Beating MS” and feel free to message me via that page. I’ll do my best to help with as much info as possible x

Thank you Janet, I’ll PM you x

Sister and husband contemplating selling house to pay for stem cell treatment in Mexico !

I am in debt having borrowed to pay for mine. It is more economical to go through Moscow, and better in my opinion, because it’s inpatient based. I needed emergency treatment a couple of times so that was critical for me. Also at the press of a button you have anti nausea meds, pain relief, sleeping tablets etc etc. Pre treatment testing including MRI is included and In the event of needing any treatment over and above the basic procedure as I did, there is no additional charge. Dr [name removed by Moderator] also gives you his personal mobile and email at the discharge consultation. He is always very quick to reply with support and backup once you’re home too. I know I am biased having been treated there, but there are no financial surprises in Moscow.

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They need to wait and see what happens with this latest relapse.

Janesy put a link to an interview with Dr [name removed by Moderator] from Russia which was really interesting. But one thing was highlighted for me. Stem cell transplantation can stop the disease process, prevent relapses and progression (if you are lucky, reading other accounts).

But it cannot reverse nerve damage. He said he did HSCT on someone who was SP and 6.5 on the EDSS. There was no further progression, so the stem cell transplant was a success, but the patient remains at 6.5.

So the damage that is being done to your sister could result in permanent damage, or it might result in complete remission from the relapse.

Following my major relapse 6 years ago, I had a lot of remission. But not complete. And the progression that has followed has left me SP with an EDSS of 7. So if I were to have HSCT, I would still be as disabled as I am today. I may not get worse, but even with the very best outcome, I wouldn’t get back what I have lost.

I really do hope that the plasma exchange actually does result in complete remission for your sister. And it’s possible. In which case, maybe she could get onto a trial here in the U.K. rather than use up all their assets for treatment abroad. I cannot imagine a better candidate for a trial because she started with having had only mild relapses before this last few months.

Sue

Thanks Sue, Very interesting . I was also under impression that HSCT would undo whats already happened, I think my sister and brother in law certainly are ! If I’m totally honest with you, and this has been a niggle of mine for a long time, my sister tends to go with what ever my brother in law says . I think because she’s not really switched on with her MS she tends to leave most decisions to my brother in law. Dont get me wrong he looks after her well, but when it comes to decision making she tends to withdraw a bit. Personally I think the MS has knocked the stuffing out of her self esteem and confidence so she has very little confidence in challenging or making decisions. This is where I tend to step in and get a feeling for her thoughts and bring them to everyones attention. As the saying goes, “blood is thicker than water” .

I would definitely want to make it very clear that HSCT is intended to halt progression. Improvement to existing disability is not in any way expected. No one has yet found a way to repair nerve damage or those people with spinal damage and paralysis would be walking again. So over and above halting progression, any symptomatic improvements with MS are a massive bonus.

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If you watch the interview with Dr [name removed by Moderator] that Janesy gave the link to, you can see that while HSCT is an amazing (if terrifying prospect, and one which I am massively impressed by anyone undergoing), it does not cure existing damage. It’s aim is to halt further relapses and progression. Not to cure existing damage. And the procedure doesn’t even guarantee that.

So maybe your brother-in-law needs to know more about the HSCT procedure. And you can start that off by calling it chemotherapy and stem cell transplantation. They are scary words. And anyone undergoing such a drastic therapy really needs to understand the risks involved.

That said, wow, it’s a fabulous treatment for those people who manage to have the treatment early enough in their disease process and who are lucky in that it suits them. Let’s not forget, that while we all experience MS differently, our response to treatment is different too.

Sue

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a few months ago there was a tv programme about a solicitor who had undergone a treatment - can’t remember if it was HSCT - and he or his wife posted messages on this site. I wonder how he is getting on?

Mark Lewis had a mesenchymal stem cell treatment. It is very different to HSCT and doesn’t involve chemo.

Excuse my ignorance but what are the differences ?

jactac

You may find this informative.

I think it is a balanced account from someone who undertook HSCT and her experience. No axe to grind or idea to sell.

http://www.bbc.co.uk/news/resources/idt-sh/caroline_wyatt_multiple_sclerosis

All the best

Mick

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This was the conversation we all had about Mark Lewis at the time: https://community.mssociety.org.uk/forums/everyday-living/mark-lewis-channel-4

Firstly they use different types of stem cells

Mark Lewis took part in a trial in Israel. He had stem cells injected into his spine. There was a trial of this process at Bristol some years ago I believe which was unsuccessful.

HSCT is removal of stem cells from the blood, chemo to wipe out most of the immune system, then the reintroduction of the stem cells into the blood to speed up recovery from neutropenia caused by the chemo.

I started using multiple sclerosis (MS) herbal remedy i purchased from [removed by admin] January this year. I only used it for a month and two weeks, my condition changed automatically, all my symptoms are gone. Remaining positive have helped me during this treatment. Now am living MS FREE. Hope this will help somebody, remember, do your own research and make your own decisions based on information you have received and digested. Thanks [removed by admin] for their amazing work. Forever Grateful!

Why, oh why did admin remove the web address, such a magical miracle cure is just what I’m looking for. Imagine just 6 weeks of a herbal remedy and some positive thinking. I could be rid of this pesky disease. Forever.

It might even work better than Albrecht Durers magical health tonic. And cost less than the big pile of gold bars I was going to pay him for it before common sense got in my way.

Sue

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Tsk tsk,

so cynical

…actually I could not have put it so politely or with good humour

Nice one Sue

shoe repairers?

Mick

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