May 29, 2012
Wednesday 16 May 2012
I went for my three monthly check up and saw Dr W (the Registrar). I said that I had felt Ok for the last 3 months apart from the usual fatigue and muscle ache. I do wonder what is "normal" for MS and what other people experience on a daily basis as some people do not seem to have many ongoing symptoms and yet are in a more advanced stage, while I am on constant medications and always seem to experience constant reminders in the shape of pain and stiffness and occasional tingling which comes and goes. I don't think there is a "normal" as I think it seems to manifest itself in different ways and we all have our own personal pain thresholds.
I was advised that there is going to be a change to the "Ponesimod" drug trial in the next few months and they are taking out the 40 strength (there are three strengths of 10, 20 and 40 and none of us know which we are on). Apparently there have been the most side effects in people who have been on the 40 strength (so don't think that can be me as I have had few side effects that I am aware of). So in July I have to go back to resign contracts and enter a new phase of the drug trial where participants will either be on 10 or 20 strength but it will still be double blinded so no--one apart from pharmaceutical company knows what strength we are on. I will have some questions such as will this go on for longer (as the trial I was on was due to finish in March 2013) and when will we find out what strength we have been on. I am sure I will find out on my next visit.
Anyhow I then saw D my MS Nurse and she did an ECG, took bloods, checked blood pressure, did pulse, temperature, and urine. She had done a half marathon with one of the other MS nurses for the MS Centre in April which was an amazing effort.
Visit Time 1 Hour 30 mins
Travel Time 1 Hour
Travel Distance 40 miles