So I saw my neurologist yesterday to review my 'urgent' MRI from a couple of weeks ago. Actually this appointment wasn't exactly what I had expected. My neurologist compared my latest MRI to a n MRI from 3 years ago (which is probably close to where I was still on Tysabri and it was still working). The comparison between these two scans is obvious, clearly more inflammation now compared to back then, even though al the reports analysed them as stable when MRIs were only being compared to the last scan. Anyway to cut a long story short my neurologist is referring me for HSCT because in his words 'I'm supposed to be making you feel better, but I haven't done that yet' ... which isn't strictly true, I have felt worse than I do now. I know his hurry to do this is just in case the 'blip' I experienced in January reflects the fact that I'm still at risk of disease activity despite Lemtrada, and the longer the stem cell therapy is delayed, the greater the risk of the treatment being less optimal. As I'm fully mobile and my symptoms all have periods of worsening and then getting better (RRMS) I get the impression that this means I'm the ideal candidate for this therapy.
The issues I'm having contemplating this road of treatment:
*Scared of actually dying
*Fear and everyday anxiety contemplating risk of infection
*Living but battling being really sick during treatment
*The sacrifice of my current ability for a chance at a long term gain
* Pressures this will put on my family and friends
*Fear of loneliness and social isolation
The stupid thing is I am so instantly upset about this whole situation, but I still have a way to go before actually getting this treatment. My case will be presented at a meeting of clinicians next week, then I'm not really sure what happens next. I was told I could be looking at treatment by the summer (which doesn't really seem so far away).
I'm still a bit upset that I don't seem to be set on the road for a Lemtrada success story, even if it can't really be defined that Lemtrada didn't work for me, or was my treatment intervened too quickly to really judge this?
So stunned and a bit in denial that I'm not a Lemtrada success story. Is weird I need to just get on with my life like I still planned to on Monday just passed, but at the same time I'm burying my head in research papers for HSCT to try and assess the risk and convince myself that I will be OK and maybe this is an opportunity not to be missed!?!? :-s
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