Tuesday, 2 August 2016
Week 39 to Week 52
I came off Biotin for a time.
First, I was suffering from a yeast infection which was not clearing up. Thinking Biotin might have an influence, I figured it would cost me nothing to stop.
Then came a blood test, so I waited to restart. Then, the infection cleared up.
Then came another blood test (another delay), and the infection returned – so I am now back on Biotin.
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).
Wednesday, 9 March 2016
No change since last week
No real change. Another physio session, including walking between the parallel bars.
I can manage 5-6 yards without holding on, but over 20 yards I start to need some support from the bars. Without the FES, I can hardly move at all. Apart from the morale boost, the best bit is that this is giving the physio a chance to observe my gait in some detail.
At an annual FES clinic, my performance on the Timed 25ft Walk, was the same as it was one year ago. How much is down to Biotin I do not know, but I figure it is not doing me any harm.
No real change in the mobility. Fingernails are growing visibly faster.
No big changes. With no weight at all on left leg, there is a clear (but tiny) improvement in voluntary flexion in left ankle. Some leg movements have not improved. And, a couple of minor changes in condition (non-MS related) may be masking any real improvements.
Monday, 25 January 2016
No physical change from the previous week.
No physical change from the previous week. This may mean that the Biotin will do me no more good, or that it will take more work (or physio) to get any further benefits. The story continues … .
Much the same as Week 24. No obvious change, but all the small improvements remain.
No detectable change. During a physio session, I managed 4 steps (2 right and 2 left) without support. My FES was switched on, and the steps could be described a controlled lurches, but it may be that the slight increase in left ankle movement is helping the FES do its job,
This could have been “no change”, but for one thing … In the physio session this week they had me walking up and down between parallel bars. This feels nice and safe because there is something to grab onto just an inch or so from your hand. Now, without holding on, but with my FES switched on, I walked about 20 yards without support. Not, I have to say, in one go; it was in chunks of 3-4 yards with a rest in-between, and it was more like a series of controlled lurches than a normal walking movement. I have not walked this far for at least two years. This will not get me a 0.5 decrease in my EDSS, but it is a real, visible improvement. The target now is to get some strength back into my left leg.