Last week I was in Charing Cross for a follow-up appointment with my Neuro and visited the MS day ward to get my monthly blood test done. While I was there I met a young woman that was one of the first MS patients in the UK to get Alemtuzumab.
When she got the treatment a couple of years ago she was in a wheel chair and was not able to work. She now walks quite well though still uses a cane for balance and is back at work. This is what I was hoping for as a best case. Well, not the work part, the walking part!
Unfortunately it does not seem that the treatment has had any impact and it really should have shown its face of improvement by now if there was to be any. What I am seeing instead is continued disease progression.
The visit to the neurologist did not provide any positive light. The scans show no new damage to my mylin (in the form of lesions) yet the disease has progressed. It seems there are two flavours of MS...one that shows as lesions and one that does not. The former is the one that responds well to treatments such as Alemtuzumab and the stem cell regimen that I was hoping might be a final chance. The one that I seem to have is not so cooperative.
The next step is a PET scan to see if there are lesions that are being missed and a consultation with another neurologist for a second opinion. The NHS is doing what they can. I guess it is just a matter of hoping for the best.