my experience

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my experience

Postby 21456 on September 23rd, 2003, 9:27 am

What a great site. Doctor diagnosed me with this one today, and at last after 20 years I have some idea what is wrong with me. Lots here rings true. Just for the record:
- muscle twitching began at age 17 or so, at that time high liver enzyme levels were noted (I believe transaminase), a liver biopsy was done which was clear, except for some steatosis. there was talk nonetheless of (asymptomatic) hepatitis
- abnormal transaminase levels, albeit at lower levels, have continued since then; after losing a considerable amount of weight these levels have been normal for the past two years
- the initial onset of twitching coincided with severe fatigue, almost so bad at a certain point that I could hardly walk. this was diagnosed as post-viral syndrome, then chronic fatigue syndrome and ME. I think these are all the same things.
- this coincides, it seems to me, with the auto-immune theory of BFS
- the twitching receded for many years but remained at a low level. it recurred recently in tandem with some very disruptive events in my life, this time associated with a posture tremor (both hands but more in left) so that I again consulted a neurologist
- the neurologist diagnosed essential tremor as unrelated to the twitching. however, I see on this site that many people report such a tremor, and I also see this as part of the same set of symptoms. I think it is too early to diagnose ET as I have the tremor only for a few months.
- I am 37, and do an office job
- Happy to provide any further information to anyone with a serious scientific interest
21456
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Postby sheilainsa on September 25th, 2003, 1:00 am

Hi there
I have the twitches and the tremor too, also more in the left hand, and also in legs depending on position, most noticible when holding in the clutch when driving.

I'm sure the twitching and tremor are connected, as they both started round about the same time for me. I also get quite frequent hand/foot jerks which I find the most freaky.

I was back at the neuro last week and he gave me some beta blockers for the tremor which I take when it really bothers me.

Sorry to hear you've been having this for 20 years. I was hoping it would fade away soon.
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Postby 21456 on September 25th, 2003, 8:42 am

Thanks for the reply. Don't get me wrong, the problem was severe for 3 or 4 years, in conjunction with chronic fatigue; it receded afterwards, though never completely, and it only recurred recently, at the same time as the tremor, which was new, in the context of a major upheaval in my life. Psychologically it was a nightmare initially, but it is much more manageable now (and even more so since I finally got this diagnosis). This recent flare-up lasted a few months with almost constant twitching in the cheek for a couple of months, but I think it is receding again now and hope the tremor will go with it. I know ET is common in the population anyway, but I am quite young to have it and there is no family history, whereas ET is normally an autosomal dominant hereditary condition on my understanding, so if I inherited it one of my parents certainly would have had it.
Good luck.
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