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.

Week 33.

Generally the same as week 32

Week 34.

Same as previous two weeks

More Rambling:

I was thinking of this for several days, and the comment from Anon on March 16^th 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.

Week 35.

As the previous week. I now have an appointment with a GP to discuss the oedema.

Week 36.

Same as, same as …

Week 37

Looking forward to seeing the GP about my swollen left leg. I think this is masking any improvement from the Biotin.

Week 38.

See the GP this week for blood test results and a look at my leg (still enlarged).

Week 28.

No change since last week

Week 29.

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.

Week 30.

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.

Week 31.

No real change in the mobility. Fingernails are growing visibly faster.

Week 32.

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.

Week 23.

No physical change from the previous week.

Week 24.

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 … .

Week 25.

Much the same as Week 24. No obvious change, but all the small improvements remain.

Week 26.

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,

Week 27.

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.

Week 19.

Interesting. I stopped taking Biotin for the whole week. No obvious withdrawal effects, no changes to the tiny bits of movement that have come back to my left leg and foot.  Had blood taken toward the end of the week (for a PSA test – more on this next week).

Week 20.

Started the week with a visit to the Urology clinic, The consultant told me that he did not accept that Biotin could affect a PSA test. This test is involved in the diagnosis of prostate cancer. Now the Blood test was “normal” unlike the one in October which was “slightly elevated”. Now, I cannot see Cerenday putting out wrong information, so if you add the two things together, my guess is that it was Biotin that started the cancer scare in the first place. Happily, the medication for my over-active bladder has been changed and has made a favourable difference. Now back to the “normal” 300mg daily.

Week 21.

Having gone back to normal, I have to say that I did not notice any difference when I stopped dead, or when I restarted. All the tiny movements that I had noted over the first few months have stayed with me, and no new additions have shown up. I regard this as a good sign, as some of the high-priced prescription drugs for aspects of MS are noted for a downturn if stopped suddenly.

Week 22.

Physically – no change.  I have had the copy report after my last Neurologist appointment for a few weeks now, and am reducing my Gabapentin by one 300mg capsule per week. I am supposed to stop when the neuropathic pain reappears. Got down to 1800mg per day (from 2700mg) and an staying on this until the Christmas holiday is over. No adverse signs, but some dystonia type pain in right thigh which can be related to certain muscles

This week I got the formal Urologists report (after the visit in Week 20) with actual numbers for the reduction in PSA. These do tend to confirm that Biotin had lead to an elevated PSA in my first blood test, so I really do advocate that anyone who is about to have blood tests carried out visit the URL in Week18 and stop Biotin for 4-5 days before the blood is drawn.

Week 19.

Interesting. I stopped taking Biotin for the whole week. No obvious withdrawal effects, no changes to the tiny bits of movement that have come back to my left leg and foot.  Had blood taken toward the end of the week (for a PSA test – more on this next week).

Week 20.

Started the week with a visit to the Urology clinic, The consultant told me that he did not accept that Biotin could affect a PSA test. This test is involved in the diagnosis of prostate cancer. Now the Blood test was “normal” unlike the one in October which was “slightly elevated”. Now, I cannot see Cerenday putting out wrong information, so if you add the two things together, my guess is that it was Biotin that started the cancer scare in the first place. Happily, the medication for my over-active bladder has been changed and has made a favourable difference. Now back to the “normal” 300mg daily.

Week 21.

Having gone back to normal, I have to say that I did not notice any difference when I stopped dead, or when I restarted. All the tiny movements that I had noted over the first few months have stayed with me, and no new additions have shown up. I regard this as a good sign, as some of the high-priced prescription drugs for aspects of MS are noted for a downturn if stopped suddenly.

Week 22.

Physically – no change.  I have had the copy report after my last Neurologist appointment for a few weeks now, and am reducing my Gabapentin by one 300mg capsule per week. I am supposed to stop when the neuropathic pain reappears. Got down to 1800mg per day (from 2700mg) and an staying on this until the Christmas holiday is over. No adverse signs, but some dystonia type pain in right thigh which can be related to certain muscles

This week I got the formal Urologists report (after the visit in Week 20) with actual numbers for the reduction in PSA. These do tend to confirm that Biotin had lead to an elevated PSA in my first blood test, so I really do advocate that anyone who is about to have blood tests carried out visit the URL in Week18 and stop Biotin for 4-5 days before the blood is drawn.

Week 17.

Pretty much the same as previous week. There are small but detectable movements – nothing big, but enough to support the whole thing.

Week 18.

“Another small step for MS man”. One of the favourite excercises for those of limited mobility is to tap their toes. Physio had me trying this, this week. So I can tap my right foot with ease, but the left is another matter. I can “feel” the left toes trying to move, but that is it. However, the physio said that she could see very small movements in the shoe itself – not enough to call it tapping, but moving just the same.

And a warning:

The week brought a new problem that could potentially impinge in all who take high-dose Biotin. Cerenday have highlighted the fact that a (large) number of blood tests rely on Biotin (or rather on being able to detect traces of the stuff). It looks like there is a need to “flush” the system before a sample is taken for any of these tests. Go to:

     http://www.thisisms.com/forum/biotin-cerenday-md1003-f56/topic26243-105.html

and read the thread – notably page 8.  I am having a sample taken in four days time for one ofd these tests so I am stopping now.