A while ago I posted asking about the above and not many people had heard of it. Well I’ve just got back from seeing my Neuro and he really thinks I should give it a go. He is a brilliant Neuro in London and although after months of thinking its not for me after todays meeting we have decided to go for it. Im PPMS dx 3/11 and in his words my progression has been rapid. Im a full time wheelie already and cannot even stand alone, let alone walk. Im 51. The drug is a type of chemo administered by IV infusion every month over a day or two for 2 years. The idea is to completely wipe out my immune system and with no immune system, no attacks on my CNS. Side effects are hair loss and sickness and suseptibility to UTI. Success rate is 1 in 5 which I thought were poor odds but the Neuros, there were 2 of them, basically said compared with no alternative they were worth a try. Antibiotics are given as a prevention rather than a cure. The ultimate aim is to stop/slow down progression.
Poxy disease this isn’t it? From running building sites building high rise blocks to not being able to stand in less than 3 years is frustrating to say the least. But, you know what? There is always someone worse off.
So mri’s on brain and spine on Friday and start treatment Tuesday 26/11.