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Panorama... MS drug... Tonight apparently

Well after a couple of cancellations apparently it really is on tonight… BBC1 at 8.30 pm.

It’s about that stem cell treatment that has been used for cancer. In a trial of RRMS people it has been very successful.

Radio 4 Today Program this morning said that they use chemotherapy to basically kill off your immune system and then use healthy stem cells to reboot it. it’s not a cure and it won’t fix damage already done…and I have no idea if it will work at all for us PPMS and SPMS folk.

Worth a watch though…although I’ve no doubt we’ll all have that thing from family and friends that they’ve found a ‘cure’ for MS!

Pat xx

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Yeh, Pat, someone on EL board has set up a kind of scroing game…to see who gets the most…

hey, have you heard about the new cure for MSers?

We`ll see, but these ideas do give folk hope.

pollx

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Very good programme Pat. Did u see it? I am very encouraged by the results Had a big argument before it began though, my other half said he thought it might work for me! If yr nearest and dearest can’t get it right …! Enjoy yr day Anne X

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Hi Anne, it was brilliant!

I wish they had explained why they are not doing a trial for PPMS…but maybe that will come next. Anyway it offers real hope for the future.

Pat xx

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The treatment cost > 30k ,so I expect to see Scotland and Wales getting it but not England !!

Plus is the treatment permanent ?

You would think after the so called re-boot taking your system back to where it was pre MS, you would be just about perfect after your muscles got used to their new capability.

Why have’nt we seen wealthy MS’ers who have paid for the treatment testify to say it works and they are now back to normal ??

I think this has obviously some benefits but how long they last is the big question !!

In other words after changing youe stem cells, whats to stop the MS trigger happening all over again the very next day ??

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The treatment is already available on the NHS at Kings in London, as long as you fit the criteria. Also, facebook is full of MSers that paid for HSCT overseas and claim remarkable improvements.

Anecdotal reports suggest resetting your immune system has lasting effects and improvements have been maintained a number of years already. There is plenty of information out there, but you have to look.

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Well you would think anyone having that treatment and being virtually cured would be plastered every where.

Why haven t these people with money done it and reported it. Montel Williams and the ex Man Utd player ( forget his name ) just to name two !!

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The publicity was brilliant and MS got good news coverage across the media all day, so worth it on that level alone.

The criteria for the trial is aimed at those groups likely to produce the best results, so that always counts us out. I guess there is some sense in going for the low hanging fruit first. PPMSers going overseas for HSCT claim the procedure halts progression and still provides benefits, if less remarkable.

I honestly can’t see this development as anything other than extremely positive.

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Probably because MS isn’t a terribly sexy condition. Take a look at the files on this facebook page and see if that helps.

It costs 30k plus !!

My question remains the same, there are plenty of wealthy and some famous MS’ers in the world , why haven’t they had it done and reported the improvements ??

All there is is anecdotal evidence, just like there is with LDN, vitamin D , Biotin etc etc.

Having said that I expect it would help to some extent with some or maybe all of the MS symptoms.

But they’re all just sticking plasters with greater or lesser affect. Until the cause is found how is it possible to treat anything unless you know whats causing it.

It obviously works on some to some extent, why is the big question ??

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If you go overseas then the cheapest is probably Russia at USD40,000, and they will treat PPMS, although they do have a two year waiting list. Of course, it is available on the NHS in the UK.

The blogs on the site I mention seem to indicate that plenty of ordinary MSers have raised funds for this procedure and report good results. Not sure what being famous has to do with it.

Anyway, I can see you are not convinced and will trouble you no further.

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The Barts Blog have published the criteria for HSCT at Kings and it seems PPMS will be considered if there are active lesions.

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What being famous has to do with it is this, if someone like Montel Williams, had stem cell therapy and it worked, he would be all over the place promoting it , writing books about it, being paid by clinics to endorse it etc.

These blogs you mention , are any of them verifiable ? The internet is full of people saying this works that works, a lot are put there by whoever is providing the service.

Ive got 40 k and I would do absolutely anything to be able to walk properly again but I aint giving that kind of money to some russian clinic on the basis of what some people say on facebook. But if I had millions and used to be a household name I may very well do.

Available on the NHS here is it ?? Oh yh providing you meet the criteria, erm what criteria, whether your RRMS or not not. They dont even know how to classify that one properly !! I recently had a neuro suggest to me that I may be RRMS and the PPMS diagnosis not correct and all that was happening was I was recurring remitting over a long period of time. She even suggested she had patients that would go 5 years without a remission, then have it solidlyfor 5 years.

No one to date has ever asked me if I wanted to go on a trial or try anything, so how they randomly found those 2 guys for last nights program mistifyes me !!

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Further more why aren’t those 2 guys from that program on here. This, surely is one of the first places you go when you get MS.

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They didn’t ‘randomly’ find those 2 guys… In fact it was 2 men and 2 women.

The trial is being done at Sheffield hospital, and I think they said 3 other hospitals abroad.

The neurologists at Sheffield Hospital would have carefully considered who fitted the criteria for the trial.

It’s important to get facts straight.

Pat

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Didnt see the 2 women had switched off by then, but I do apologise the ‘facts’ wern’t entire.

Still like i say Ive had PPMS for 11 years, diagnosed at Addenbrookes by two ‘leading’ neurologists and have been approached by NO ONE since then about any treatment or trial !!

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Very disappointed that this will no help PPM.

Except it can help stop progression in PPMS, but just not part of this trial.

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Pretty well what my neuro said to me a few weeks ago. He said he had no problems with me trying out things for myself if they weren’t going to cost too much (eg biotin) but as for spending £30k to go to Poland for stem cell treatment- forget it.

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’ Can help ’ Theres one of those indecisive un-absolute words again.

I am looking for will, definately and absolutely !! or at least will in 50% !!

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