As I look back on the posts that I have done to date it is obvious there is a link between my optimism around the treatment and the number of times that I have posted:
|Feb||14||In for the treatment.|
|Mar||47||Out and feeling optimistic.|
|Apr||0||Where is the recovery from my stay in the hospital?|
|May||4||Where is the positive impact on disease progression?|
|Jun||1 to Date||What is next?|
As I write this my level of optimism has continued to flag. I don't think that the treatment did me any harm but unless it suddenly kicks in then it has also done no good. My disease has been progressing, as MS does, since my diagnosis. As the myelin has eroded it seems like the threshold for further damage has become lower.
In any case I am at the point where I almost always need two crutches to move around. Fatigue levels have also not improved. Climbing a flight of stairs leaves me as tired as scaling a cliff did at one time.
I am not sure where we go from here. There are simply not a lot of treatments for MS. There are only 250-350 thousand people suffering from MS in the US. By contrast almost 40% of people will have a cancer of some form during their lifetime. Funding, and the options that this provides, reflect those numbers.
My next appointment with the neurology team at Charing Cross is next week. I have a set of MRIs scheduled for the middle of July and then another meeting with the doctors. Hopefully there will be some options.