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mmhhpp
6 months ago

Thanks that is useful info
Sadly Tougher for spms apparently …..


merfield
6 months ago

Very very interesting and informative. The first mentioned experimental treatment using stem cells to replace lost myalin sounds the most promising for any stage or form of MS. So there’s hope out there. Thanks @stumbler for posting the info. Xx


paulmorrison
6 months ago

@stumbler thanks for that. My mind is for definitely going abroad, any idea of the most reputable?


rubeus7777
6 months ago

@stumbler
Thank you for sharing! You’re the best and you always give a lot of people hope.


stumbler
6 months ago

@paulmorrison , I have no firsthand experience, so I would duck on answering your question.

Look up the other posts on HSCT and refer to the Facebook groups mentioned.


aliga
6 months ago

Thank you for posting @stumbler. Can I just say ‘thank you’ too @stumbler for going above & beyond, to provide answers to so many of us, when we have questions. Your help & time you give to us is genuinely appreciated.


richj
6 months ago

Hi Stumbler, I have just seen the discussion and the comments from the unhappy person. Can I firstly reiterate the remarks already made: you are a source of wisdom and kindness on this site, and have metaphorically held my hand when considering which treatment to start and how to renew my driving licence ( still waiting !). You have shared your knowledge willingly and quickly and posting this video is a classic example. Thank you for the help you have given me and countless others in dark times.


rachaellouise
6 months ago

@paulmorrison

Heard Mexico , Russia, India and I think Chicago !
Not sure what the places are called . Think the one in Mexico is called Ruaz
Or something

Maybe look those places up. Good to get a recommendation . Their are people on here who have been but not sure who . Think Barry was one but he’s not been on in a while so must have worked lol 🙂

I like coming on this site because I’ve met a few nice people and would like to talk to them if their wasn’t this site too now .

Rachael xx


rachaellouise
6 months ago

Don’t eat to name names and leave people out but I class people as my friends on here now .

Has anyone heard from @nutshell88 . Hope she’s okay she really cheers me up and I hope I do the same

Rachael x


rachaellouise
6 months ago

@stumbler – just watched your video

Thanks – what do you think ? Would you go for the treatment ? It says progressive .
If you had new lesions and a mri maybe that would let you on ?

Still shame they won’t just give us all the choices wether on dmd or not . All ms people should be given this choice and should be open to al people . We should decide and weigh up the risks ourselves and if we want to go for it then it’s us taking the risk
Also dmd cost a fortune so if it’s to do with cost then surely cheaper in the long term


sigmadelta
6 months ago

Thanks for that Stumbler, saw my neurologist last Monday, and she didn’t let on about the “Game-changer” breakthrough we all saw on TV a few days later. Even though she was obviously aware of it.
So… it seems it is for the “selected few” again.
In other words, if you are newly diagnosed with just a few minor complications in your life, you will get the treatment.
Those of us who have suffered for years can go whistle.
I suspect they are thinking treat all the newbies now, and in 25 yrs all the oldies will have gone anyway… end of prob.
A similar scenario to the battlefield situation whereby if you were wounded and could still walk you lived.


stumbler
6 months ago

Ha Ha, @rachaellouise . If it came to a case of prioritising all MSers, I would be right at the back of the queue.

That’s a polite way of saying that I’m too old and knackered and had MS way too long!! 😕


mmhhpp
6 months ago

@sigmadelta
I totally agree with you….
Xx


mmhhpp
6 months ago

Well said @rachellouise xx


rachaellouise
6 months ago

@stumbler – he said their were some places for progressives. How long have you been progressive ? Surely people who are progressive have been that way a while

They also don’t want newbies unless severe ! I’d say I’m a newbie to ms but probably don’t fit the criteria ! It doesn’t make sense to not offer it to not severe too. Save all that money on dmd .


aabreu
6 months ago

thanks for posting @stumbler.

Dr Elbi Silber seems very knowledgeable. Most neurologist I’ve had don’t have much to say about HSCT. After all, In USA, this is not a treatment option. UK is more progressive in that respect.
He did a good job with this video. I wonder why he made it. Then I thought, I bet the phone in the office is ringing off the hook with people asking to be treated.
He should do another video explaining the reason for the criteria. I think people’s tune would change if he talked about some of the risks.


stumbler
6 months ago

@achaellouise , see my comments on this post:-

https://shift.ms/forums/topic/stem-cell-spms 🙁


paulmorrison
6 months ago

@stumbler, took your advice and looked on Facebook i am going to apply for a clinic in Moscow, hopefully a success story to follow. @rachaellouise, your right, none of us expected to end up in a place like this, but yes there are some great people here. Got to take the positives where you can….. x


monica2015
6 months ago

Mexico accept up EDDS 8 I believe and Russia 6.5, although some centres go higher, possibly Israel, Raffles and in India.

Pls conduct extensive due diligence.


monica2015
6 months ago

I had transitioned to relapsing SPMS but personally know of two others who were progressive from the outset, so do not accept no for an answer!

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