I went for my 3 month checkup today. Unfortunately I didn't get a neurological assesment but it would only have confirmed what I know. Since treatment my condition has definitely improved. Prior to treatment I was assesed as EDSS 4.0, in my own judgement I have improved by at least 1 EDSS point since treatment, probably more. Hopefully these improvements will continue.
A sobering note to the proceedings was that one patient on the CAMMS223 trial has died from a condition called ITP (idiopathic thrombocytopenic purpura) This is an autoimmune condition that causes the immune system to attack platelets. Whilst it cannot be proven that Campath was responsible for the development of this condition, given the fact that related autoimmune conditions such as Graves disease are known to be possible side effects it seems likely. Had the symptoms been recognised and reported to the trial doctors ITP is a treatable condition and this person need not have died. It is however a reminder to all of us who participate in clinical trials that nothing is guaranteed.
The unfortunte fatality was on the American side of the trial, Rat, I really hope you're ok...
Despite this news, given my improvements and the fact that I have not had even a whisper of a relapse since treatment I still firmly believe that I have done the right thing.
Do not go gentle into that good night. Rage, rage against the dying of the light.