New face from Ukraine

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New face from Ukraine

Postby Yuliasir on April 10th, 2012, 11:18 am

Hello everybody, my name is Yulia, I am 42 and live in Ukraine. So I would like to say I am sorry in advance if my English is not so good...

First of all I would like to thank the founders and moderators for creating and keepning such a reassuring place for those who suffer from BFS. I found such enormous support even before i decided to join and share my experiences, it really helped me a lot because Russian segment has only information related to heavy MND and says almost nothing about bening conditions, their course and differential diagnosis, etc. So I would like to say I survived my heaviest two-three month from the onset due to this site. On our forums neurologists usually send patients with such symptoms directly to the psychiatrist without giving any good explanation of what the condition it might be.

My story is quite typical, I think. I suffer from anxiety disorders as far as I can remeber myself (I developed obsessive fobies at the age of 6, last year i was finally diagnosed with GAD). I also was diagnosed with a kind of hypermobility syndrome which is often assosiated with twitching and high probability of anxiety disorders etc. I still can easly do that hocus-poucs with the upper arm which Mel Gibson shows in the "Lethal Weapon" ;)
I started to twitch October 2011 4 weeks after a flu spent almost 'on air' (I was in the tour so I could not properly rest or take a day or two in the bed). It was typical start at the round eye muscle, then all ower the body (first left side, then right one). It took me one month to get to the neuro, so i was quite twithcing at the moment of EMG ;) but not at the EMG itself, as many of us ;).
So far I have clean EMG (the resume says no indications of motor unit damage), performed on thenar muscle, slightly low Ca levels (due to long term oral hormonal therapy I think), all the rest is clean and Ok (general blood work, CK etc).

I also account a lot of stress as a reason for my condition (benign myoclonia, as my doctor calls it) - I am a freelance translator and before all that nasty things started, I was working for a 12 month already 14 hours a day at the PC without ANY day-off or vacations, making quite a good money but killing myself slowly. therefore I strted to get complaints from the customers, which stressed me much more... and OOOPS - twitching!

Being a real hypohodriac, I called also my psycho, and she quite openly told me that I should not do all that things (read abt ALS/MS/etc.) prescribed Rexetine (which badly increased my twithcing by the way) and said that she saw enough people like me and the picture us quite clear on the basis of neuro exams - I rather have inherent psychoneurological condtion agggravated by stress than MND.

For now (5 month from onset) I have almost full range of symptoms - twitchings, jerkings, painful sensations, numbness, temperature sensitivity (even mild cold makes my hands useless), percieved weakness in my both hands (drives me crazy as this is MY WORKING TOOL), I say percieved because my neuro has checked their strengs last Monday and says it's Ok and probablywork-related bilateral tendinitis, rubbery legs, fatigue and swallowing problems (usually I have a 'lump' sensation but few days ago I decided I have problems with my soft palate with food getting my upper airways ocassionally, but now I think it's rather due to esophagus issues common for stress and anxiety and bad eating habits :)). And I still have a lot of stress, despite on various antistress drugs I take (both herbal and benzo). probably the dose is too low!

I am in Geshtalt therapy for 3 years now (not related to BFS) and I am really thinking about starting CBT modules I found thru this site.

What I want to ask is - wheter anybody else tried any kind of mind therapy specifically realted to BFS - was it succesful?
And another question - I found that I seemingly have 5 weeks cycles in the course of my twitches (twithces only, all the rest is not so clearly cycled) - every 6th weeks starting from the onset is a real *beep*, i am twithcing like a hell everywhere. Then it goes away quite rapidly (but never stops completely). Since my natural cyclic activities are suppressed by OC I take, I have no idea what it could be (by the way my natural cycle was 5 weeks) and what in my body can remember that... Does anybody else have such a note?

thanks in advance and best regards
Yulia

(my neuro was surprised a bit that I had digged up and read Mayo report on BFS. I am not sure if she was aware of that one. But I was really happy to see that I do not have, probably, a kind of imaginary health problem but a real one, still manageable to a certain degree).
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Yuliasir
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Re: New face from Ukraine

Postby raindog on April 10th, 2012, 1:13 pm

Hi Yulia very pleased to hear this site and its helpful members helped you in them dark days and you have moved away from fears of MND, ALS etc

It maybe worth your while looking back through Chrissi's posts regarding therapy /related to her BFS / Fibromyalgia. We all have flare ups from time to time , mine has been pretty constant for 6 years without any noticable let ups .

ATB
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Re: New face from Ukraine

Postby Yuliasir on April 10th, 2012, 1:52 pm

Thanks, raindog, I already strated to read her posts...very helpful...
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Re: New face from Ukraine

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