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paulmorrison
4 weeks ago

A little bit scary but very promising.


aabreu
4 weeks ago

Thanks for posting this article @wrinkly

I think it was a pretty balanced article. It mentions the potential benefits and risk fairly well.
We should all read this article.


seanachai
4 weeks ago

It just emphasises the variability of MS and how frustrating it can be; some people receiving HSCT resulting in halting of the disease (5+ years) and reversal of symptoms e.g. EDSS back to 0 for example….

Another person receiving exact same treatment and minimal immediate benefits.

Both with RRMS. Then you also have people with PPMS reporting significant improvements and halting yet the UK is only handling “active” progressive cases…. I don’t even want to imagine how frustrating it must be to have progressive and face those headwinds all the time……

All that said, and given the odds, I still believe HSCT is worth a shot, even in its current state….

It will get better and they will refine it…. and clinics supporting PPMS with stringent criteria will increase….


stumbler
4 weeks ago

@wrinkly , so 100,000 of us (No. of MSers in the UK) are going to find £60,000 to fund this treatment in Mexico?

That’ll bugger up the Balance of Trade figures! 😯


seanachai
4 weeks ago

Stumbler, I understand the point…

However, it costs apparently 30K here on NHS, but because of the anal criteria laid down in the UK, notwithstanding clinical evidence suggesting it is working to varying degrees for all sort of MS types and individuals, its forcing people who don’t meet the criteria in the UK into desperate situations to go far and wide outside their comfort zones, let alone geographical zones to seek treatment…. obviously a lot of people cannot afford and many seek fundraising…..

I get the criteria is buffer to filter out the masses and the rush for the IKEA sales but its heartbreaking for people.

30K when compared with a DMD is not a million miles away and in a lot of cases a lot cheaper…. but of course we have the usual conflict of financial interest with pharma which of course is making billions from this disease ….

The funny/ ironic thing is, even if HSCT is made available to all – there will be lots of people for lots of reasons that won’t take it up, its not for everyone.


bas76
4 weeks ago

I can’t get anywhere near my Neuro until June 27th when I have my annual once a year 5 minute useless meeting with him. Called his P.A to see if he can refer me for this treatment and she said they haven’t heard of the trial a bit scary considering St Mary’s Hospital claim to be the leading neurology hospital in the UK. Feel like this won’t be available on NHS in our lifetime, really frustrating!!!


stumbler
4 weeks ago

@seanachai , the worst part of this is that you can spend your own money to obtain this treatment wherever. And, if it works, you stand to get the bonus of losing your PIP!!!!


californiadreamin
3 weeks ago

@stumbler

you should see how much of your money already comes to the US for dmt’s. If that went to mexico instead maybe we wouldnt need to build a wall…


stumbler
3 weeks ago

@californiadreamin , Ha Ha! I’m well aware of the financial size of the world market in DMTs.

I’m afraid I’m of the opinion that if a cure for MS was found, the world would stop revolving! Medical science has failed to find a cure for anything for decades – too much money in treating conditions!

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