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.

Week 13.

No change that I can detect. Movement in left knee as not so good, but this came down to stiffness in the knee that went with the application of a heating pad.

Week 14.

The same as last week. The tiny improvements are still there, but have not improved.

As side effects, my hair seems a touch thicker, but nails still break just as easily.

Week 15.

The tiny improvements continue. Movement in the ankle is definitely there, but it is just as much felt, as observed.

Week 16.

The ankle movement has now been observed by a physiotherapist. I am back to having physio regularly, so improvements are open to independent verification. Some of my left leg movements can also be detected.  So, there are several “improvements” since I started Biotin (300mg daily). None of them are big enough to make any difference to my EDSS score, but the improvement in my left ankle movement can only help the FES to reduce the effect of the dropped foot. As an aside: both my MS Nurse, and Neuro are supportive of me taking Biotin.

Week 9.

There is a very small amount of voluntary movement in my left knee. This is comparable to the ankle movement noted in Week 8. The muscles seem to fatigue out very quickly. Obviously, regular exercise of these joints is indicated.

Week 10

No real change from week 9.

Week 11.

Much the same as the previous two weeks. The ability to flex all the toes does remain. The knee and ankle remain in the “just moving” category, and the amount of movement has not increased.

Week 12.

There is a development on the knee movement. With no weight on the knee joint at all, I can get almost full movement. To be precise: if I lie on my right side, I can bring the left knee up toward my chin, and then straighten the leg out again. And, I can do it several times. This has become a regular exercise now. Obviously the nerve pathway is still there, but the muscle is weak.

Digression.

Following on from the previous digression … …

I may not get the “average” improvement of 0.5 on my EDSS. But, if I get more movement in my left knee and ankle, the effect of my FES will be more obvious, and my mobility will improve. I will still need a tri-walker, but it could become easier to use.

Week 5.

There is an increase in the number of times I can flex all my toes before the effect falls off (8-10 times), and an increase in the amount of flex.

Week 6.

No change in the toe movement. However, I seem to be regaining the ability to bend my left knee. Imagine standing upright and trying to bend your knee and lift it so that your thigh is horizontal.  I totally lost this ability a few years back. Before that, the number of times I could do it was limited – as if the muscles fatigued out – to about three or four times. Now, I can lift my foot clear of the ground once, the second time the drop foot has the toes still touching – there is no third time.

Week 7.

No change.

Week 8.

There are signs that a minimal amount of voluntary ankle movement is returning to my left leg. The muscles involved seem to fatigue just a quickly as the thigh muscles mentioned in Week 7. Ability to flex my left toes remains the same.

A small digression:

In the medium term, the Med-day sponsored research suggests an improvement in EDSS of 0.5 for those with a score of 6.5. Now the big difference between EDSS 6.5 and all lower scores is the use of two sticks, two crutches, or a walker that needs two hands. A  change of 0.5 implies that the patient is able to do without the support of one hand.  This has always seemed just a touch unrealistic to me – but it will not stop me taking Biotin. There are enough other things that could stand a little improvement, quite apart from the possibility of halting any further progression. Slowing progression is one thing about Biotin that does not seem to be fully explored – but conventional medicine has nothing to offer for the Secondary Progressive, so what is there to lose?

Week 1.

I am using the technique of dissolving the daily Biotin dose of 300mg in a 500ml bottle of spring water and sipping throughout the day.

Each night I prepare the water for the next day.

For the first four days I took a reduced dose, and had no obvious side effects or interactions, so moved up to the full dose.

No effects in either direction were noted (no surprise there).

Week 2.

After the first full week on a full dose, there is nothing to report.

Either way, nothing.

In the context of the great experiment, the lack of any adverse effects is perhaps the most important thing.

Week 3.

No adverse effects noted.

On the plus side – up until now I could only wriggle the second and third toes on my left leg, now it is only the little toe that I cannot move. The ability to wriggle four of them seems to fall off after a few wriggles, and this is probably a case of very rapid muscle fatigue (the same thing happened a few years back as I lost the ability to bend my left knee more than a couple or three times). Now the plan is to keep moving the toes, just to see if this is a transitory effect.

Week 4.

Now I can flex all the toes on my left foot. As before, the ability falls off after about 5 flexes, but there is a nerve pathway and some muscle response where there was none before.