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My symptoms when I forget to take my treatment
So, at the end of 2009, I started to take folic acid in high doses, and I've not stopped since. I should have carried out experiments consisting in stopping my treatment to see if my involuntary movements would then come back. But on the one hand, I didn't really want to deliberately let my brain degenerate, and on the other hand, these experiments, as carried out without medical control, would have been worthless. And besides, I wanted first to check that the treatment was effective in the long term, and that I could bear high doses of folic acid. According to my reading, overdosing this vitamin was not dangerous. But I was not certain of it.
Two years later, in 2011, I was still fine. I gradually increased the dosage to one tablet every two hours, because I thought it prudent in case the effect of a 5 mg tablet didn't last as long as expected. And for the night, it was more convenient for me as I can easily put up with waking up every two hours. I even find it very pleasant. It allows me to go to the toilet, to check the temperature of my bedroom, to drink a little and often wake up from a dream with an endless loop from which I couldn't manage to free myself. I also enjoy my dreams much more, as when a dream is interrupted, it sometimes leaves some comical memories and funny impressions. And then I go back to sleep very easily, which is indisputably a big advantage.
If I didn't try to voluntarily stop my treatment, it just naturally happened when I forgot to take my tablets. Even though I organized myself with an alarm clock that rang or vibrated at the required time, inevitably there were some hiccups, some times when I forgot to set the alarm, or even during the night, I wake up at the right time, I drink a little glass of water with a drop of grenadine, and oops!... I forget the tablet! After all the trouble to wake up in the middle of the night When I was late for my treatment (generally by around 2 hours), it almost always increased the little movements for the following two weeks. These were very slight foot movements, a hand contracting nearly imperceptibly, or a forefinger that goes up on its own. When falling asleep, there were also clearly more arm or leg movements, and sometimes a sting without movement.
At the beginning of 2013, the sign of being late was strangely given to me by a twitch in my eyelid. I told to myself: Ah, what's happening, did I take all my tablets? When counting all my daily tablets and seeing that my alarm was set to early afternoon, I realized that I was 4 hours late. Nothing happened on the same day (apart from my eyelid keeping on twitching), but on the following week, my two forefingers started to move both at the same time, less strongly than in 2009 but still quite sharply, and several times in a row, with phases of about thirty seconds each. It's only three weeks later, when my movements had nearly vanished, that I exclaimed: But what a stupid idiot, I should have filmed them!
My eyelid twitched during 2 months, about twenty times a day. I could even make it twitch voluntarily, by taking a deep breath or yawning. But this may have had nothing to do with the other movements.
From then on, the idea of filming my symptoms began to form in my mind, and during the following months I prepared myself to make my first medical report. I fumbled around to learn how to film with my camera, to find the right framing and light (at least something acceptable), and I trained myself to film my motionless hand. In April, I was ready. But as for animal documentaries, you have to be patient. For it was not until September, after again having been late with my treatment, that my right hand agreed to come out of the wood. Oh, it was not easy! For the movements were very short. By the time I saw them arrive, I checked they were strong enough to be filmed, I ran to the required place, I switched on my camera and started recording, bam, it was over. Or just finishing. At last, after several failed attempts, I still managed to record the short video below, where you can see rather well the stimulated area that eventually pulls the forefinger. It's much weaker than what I experienced in 2009, but even so it's visible and above all difficult to feign. Try yourself. Me, I can't do the same thing voluntarily.
Click the image to start the video in the Windows format (wmv).
If it doesn't work, try this format instead: m4v format.
When, after being late with my treatment, I experience a phase of hand movements like the one of the above video, it lasts about four weeks. One hand or the other may be affected (rarely both at the same time), and while the movement concerns the forefinger more frequently, it sometimes concerns the middle finger or the thumb too. Never several fingers at the same time, and when the middle finger is affected, the activated area is clearly the top of the hand, and no longer the interval between thumb and forefinger. The tremor appears several times in a week, in the morning or the afternoon (sometimes during the night, but rarely). I may be doing the washing up and suddenly feel my finger moving for a few seconds. It comes back several times during around half an hour, and then it disappears.
As time goes by, the movement weakens. It's always the same finger of the same hand that is concerned, but the finger moves less and less. The last week, I can just feel the area in question trembling for a few seconds, but the finger itself does no longer move. And what is encouraging, it's that once the phase is complete, I may stay several months with no problem of that kind. It's like if my brain had managed to remove the damage causing my symptoms. From what I feel, folic acid doesn't act directly on my symptoms. It prevents damage from happening, damage that later, sometimes after several days, would cause the different symptoms felt.
So, one can understand my reluctance to the idea of suddenly stopping my treatment, if only for 48 hours. Because if being 4 hours late produces in me unpleasant effects for about a month, one can easily imagine that being two days late would cause problems that may last twelve times longer, that is a whole year! One year of after-effects, some of which may not be reversible. I don't know. There may be thresholds beyond which some neurological damage will be irreparable. There may also be cascading dysfunctions, some of which might be irremediable.
Now, let's make an assumption. Let's assume that folic acid really stops the disease from developing, that I never took any of it in tablet form, and that my brain is today deeply damaged. Then, what effects could taking high doses of folic acid have on my health? Logically, none! No visible effect, in any case. The damage will still be there, then the symptoms too, and the possibility of stopping the very slow development of this disease will not change anything in my current state.
This is why I support researchers in their search of a treatment to reduce the symptoms of seriously ill patients. They must be able to help these last ones to recover at least some of their cognitive abilities, and allow them to have a dignified end of life. But I can't help encouraging physicians to look for a treatment which attacks the causes of the damage done by the disease, and not only the symptoms that follow. According to my observations, it must be possible to act before the damage is done. Of course, I'm not sure of my analysis, and all my claims need to be verified. But I am convinced that researchers should not ignore the possibility of a preventive treatment that my personal case seems to reveal.
It won't be easy. All the more so since there might be aggravating factors.
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