@barryb 

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barryb

Just back from Mexico getting HSCT

Hi All, Well after being refused Lemtrada by my Neurologist (as it was not suitable for SP though it says so the the drug website), being told I was now SP with relapses, he was going to take me off Aubagio, and not supply another alternative treatment (so no medication at all) to then doing a 180 to say I could get any of the available treatments after I mentioned HSCT, tried to get on the HSCT trial in London was told, as expected you don't meet the criteria (no explanation) I decided, well if you got to do it, do it yourself. Used my money from my house sale, my savings, fund raised and crowd funded and went to Mexico for HSCT. Now it is a lot of money, there are no guarantees, but scr*w this, nothing my Neuro was peddling are any good and are basically a holding pattern hoping you don't suffer a relapse. So back now, the Mexican people are lovely, the staff at the clinic Ruiz in Puebla are top notch! And even at this early stage some of my heat fatigue seems to have gone, I can now lift my leg after a hot shower, I don't get the electric tingling sensation in my hands and legs when I move my neck so fingers crossed. Sorry if I sound a bit annoyed (bitter even) but I feel I (all MS sufferers?) are being let down to a degree by our neurologists, the HSCT trial in London is (imo) "cherry picking" patients with the most likelyhood of showing a significant improvement, but surely just stopping the disease at its present state is improvement enough for most people? I understand that going abroad for this treatment is outwith almost everyone's means, but it can be done by fundraising and is IMO the one best solutions available to us at the moment, this is all purely my opinion, other opinions are available lol :) Anyway I wish everyone the best on their own journeys to beat this horrible condition, I know everyone is different and some of the DMD may work just fine for most people, stay strong. Barry
@mmhhpp

Barry b i hope it does work for you! Please keep us posted! I agree with what you say.... i am in a similar situation. I see neurologyst tomorrow, we will see.....

@barryb

@mmhhpp Will do, it is a long recovery period up to 2 years! I was diagnosed in 2003 and even though I had only about 6 or 7 relapses in that time I could see my health declining. It is a scary thought going abroad (not to worry the treatment is top notch) , and expensive, but around £30,000 cheaper than getting it here in the UK privately and the criteria is not that much removed from the trial according to one of the Doctors involved. Mexico takes up to an EDSS 7 now unlike the UK Hope the Neurologist is helpful, Barry