Huntington's disease
Folic acid

Vincent Brévart
Vincent Brévart


Huntington's disease





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My intense symptoms of 2009

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My discovery of folic acid

When I got back from my holidays, in August 2008, I was a bit tired of eating spinach at each meal, and so I searched on the internet about this type of food and its components. And to my great surprise, it was not iron that spinach contained in large quantities, but vitamin B9, also called folic acid. Then I made a few searches about folic acid, and I learned that this vitamin had some connection with the good functioning of the brain. Good, that was encouraging. Next, I looked for the keywords "folic acid" and "Huntington", and found a page telling that folic acid had been proposed as a treatment for Huntington's disease. Stop! That was more than enough for me. I didn't try to check the reliability of the site in question. I didn't care, I thought I had found what in spinach might well have an effect on me. In any case, I had a track to follow.

So, I tried to buy the precious vitamin B9, and thanks to the advice of a kind chemist of my town, I could get tablets of 0.4 mg of folic acid, those prescribed to pregnant women to help the fetus' brain to develop properly. My first tests were conclusive. By taking a medium dose of this vitamin, I could get the same effect as with spinach, namely that my evening movements no longer appeared.

But it remained fragile. I don't know whether my "problem" was rapidly getting worse or if there were regular ups and downs, but I had the impression that the dosage I was taking was becoming less effective after one week or so. The movements were coming back little by little, which means that I was led to gradually increase the dosage, up to the maximum recommended dose. It was at that time that I found the tablets of 5 mg which seemed to be much more effective. I rapidly went up to the maximum dose (3 tablets of 5 mg per day), and then I went through a long period of stability of more than a year, with no more movements at bedtime, apart from one or two very weak ones occasionally. But I had the feeling of having found a soft and cheap treatment that maybe was going to allow me to live like that for several years. And yet, I was not totally sure of the real effectiveness of folic acid. I was waiting to see the development of my symptoms six months by six months.

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The strong movements of December 2009

I hoped to reach the end of 2009 without mishap, but unfortunately at the beginning of December of the same year, some very strong movements appeared. I was quietly sitting in front of my computer, improving my programs as usual. When suddenly my left leg moved to the side by about twenty centimeters, without warning and with a brusque movement, a bit like the one produced by the doctor who tests the knee reflexes with his hammer. I had already had such movements during the night, that I considered as normal sleep movements. But now, it was in the daytime, and my left leg had just contracted violently, the movement apparently coming from the hip. It was not a trivial little movement, an insignificant little "tic". Almost my whole body had been shaken by the strength of the contraction. Fortunately, the movement didn't seem to be very frequent. It came back only two or three times in the afternoon, not more.

But the following days, again in the afternoon, at a time when facing the computer I'm the most physically inactive, the strong movement came back, and this time equally on one leg or the other. There were also variations. Sometimes, the movement would come from an area below the knee, then generating a foot contraction. And next, my shoulders started to move too. This time, it was rather spectacular. Either one shoulder or the other, or even both at the same time, with a very rough movement that seemed to come from the middle of the spine. I would have been eating peas, I would have sent them rolling all over the place!

But I was not too much worried yet. If my involuntary movements were violent and unexpected, they were none the less rare (one or two per hour, not more), and they didn't seem to be really disabling. However, the day my two forefingers began to move by themselves during nearly one minute, with a wide and regular movement quite impossible to stop, I started at this moment to realize that working on computer with keyboard and mouse was going to become difficult. And when, a few days later in the evening, arriving at work (where I am in contact with the public), my lower jaw began to move to the side, several times in a row with a horizontal movement so strong that I could no longer speak, I understood that I had to rapidly take a decision.

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Folic acid in high doses

I had already thought of what I should do if one day my symptoms were getting worse. But I had to make things quite clear in my head. What seemed to me most likely, and that I had constantly kept in mind in the past two years, was that spinach and folic acid had never had any effect. The disease had seemed to recede, but it might have only been a normal feature of its development. So, I had to get ready to forget all about this empirical treatment which had been nothing but a sweet illusion.

However, there was still something that I could prove to myself by experimentation: in fact, it was just that folic acid had no effect on me. If by taking high doses of this vitamin for one or two weeks, my symptoms kept going on without any change or improvement, then it would be a clear and conclusive sign that I could free my mind from this unfounded belief. I had read somewhere that a tablet of 5 mg had an effect for about 3 hours. There again without checking this assertion, I decided to take one tablet of folic acid every 3 hours for a fortnight. And that, night and day, because it seemed obvious to me that the chemistry of my brain did not stop during the night.

From the day after the beginning of my high-dose treatment, my symptoms changed. But they got worse! During the afternoon, my leg still moved to the side violently, but now, just before the movement, I could feel an intense sting on the hip or thigh area. For the foot movements, it was a sting on the middle of the calf, causing a sharp pain comparable to the one felt when freezing a verruca off with liquid nitrogen. A great pain then, very unpleasant, but nevertheless bearable. I was not really delighted with the new thing that was suddenly imposed on me, but at the same time, I found interesting that something had changed. So, I continued my treatment, without any modification.

The next day was just as surprising. My leg still moved, I still felt the very painful sting just before, but now in between there was a little delay of about half a second. First I had the sting, then the delay, and after that the movement. It was funny. All right, the delay before the movement was very short, but it was clear that the two effects were now separated, whereas the day before they were totally simultaneous. So, there was again a change in my symptoms, which was rather encouraging.

It was my third day of treatment that was the most unexpected. I was again in the same situation, working quietly on my computer. And suddenly I had the sting which was sharp and well localized to the hip or the calf. I waited, I waited… And then nothing… The movement didn't come. The movement didn't come any more! In the following days, I had stings everywhere, on the legs, the three big toes of one foot or the other, the sole of the feet, the shoulders and even the fingertips. But no more movements! In the following week, the stings became weaker and less frequent. I just had to move a little the stung area to remove the pain. And about ten days later, I had no more symptoms, no more stings, no more movements, no more clicks.

What would you have done in my place? Me, I didn't try to understand, I continued my high-dose treatment...

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