Thursday, 21 April 2016
Generally the same as week 32
Same as previous two weeks
I was thinking of this for several days, and the comment from Anon on March 16th prodded me into putting the words down. Looking at the “story so far”, it is quite clear that there has not been a major improvement. Now I am coming to the9-month point (the limit of the Cerenday trial). I was not expecting anything major – the Cerenday trials only suggested an average reduction of 0.5 on the high scoring EDSS figures. Since I am EDSS 6.5, I am in the curious position that the 0.5 average improvement would mean that I could walk with only one stick (and give up using a tri-walker).
True I have been able to “walk” (lurch or stagger might be better terms), but only under controlled conditions in a physiotherapy session. This would not be enough to justify a 0.5 improvement. What has not shown any improvement is the intention tremor in my left hand (it is slightly worse). So what conclusions can be drawn?
I have regained a small amount of left leg function. Is this due to the creation of new neural pathways, or the recovery of damaged existing pathways – and does it really matter which? If these small changes add up to better function of the left leg and FES combination (as evidenced by there having not been a reduction in my 25 foot walk time over the past year), then I am certainly pleased. Since that result, I have started on a diuretic to deal with some peripheral oedema, and that will mean that the upper FES electrode will be somewhat nearer the nerve track, and that will also have a beneficial effect. Which brings me to my next point: if you make two changes, and see an improvement, how do you know which change was responsible?
The quick answer is that you don’t know! To avoid any wishful thinking, I have only recorded improvements that have been independently observed by others (usually physiotherapists). I have not changed my Vit D supplementation, or started anything new. The diuretic is not reducing the size of my left calf, and this is making it harder to position the top (nerve) electrode for my FES. How much this is masking any further improvement from the Biotin is something that can only be guessed at.
As the previous week. I now have an appointment with a GP to discuss the oedema.
Same as, same as …
Looking forward to seeing the GP about my swollen left leg. I think this is masking any improvement from the Biotin.
See the GP this week for blood test results and a look at my leg (still enlarged).