One more afraid twitcher...

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One more afraid twitcher...

Postby christo on November 6th, 2012, 11:39 am

Hello everyone !

I am new to this board, and new to twitches too, but already so worried...
Everything began about 2 months ago with a tremor on two fingers, not all the time but multiple times a day. Since I am working a lot on keyboard it was disturbing me and I went to my family doctor. He said that I may have some problem with the crural nerve and he prescribed me an EMG.
Between the time I go my appointment with the neurologist, I searched on google, and you know the story, tremor, fasciculation, ***.

I tried to reassure me, my tremors didn't look to be like fasciculation, so everything should be fine. Then I looked at my calves, and I could not believe my eyes, they were fasciculations on my calves, real ones, like those on youtube... I found out that there were in my feet too.
Since then, widespread twitches in all limb, even in face. I try to convince myself that it's only in my head, but you know...

Finally went to the neuro, told him about my fasciculation, he didnt care at all, didnt even wanted to look at them. My family doctor asked for left arm EMG, that's what he did, and nothing else. My EMG was clean, he told be "you dont have ***, see ya".

Two days later, my tremor was gone, I mean completly gone. But the twitches were not, and my fear skyrocketting. Went back to family doctor, told him about my fear. He told me that he could not make this kind of diagnosis by himself, so prescribed a new EMG, a full one this time, with another neuro.
My physical exam was OK but brisk reflexes. Had the new EMG, whiched showed "rare fasciculations" on both calves and knees. Speed conduction of the crural nerve of my left arm was just a little to slow, he said that it's probably what's caused my tremor and that I probably have this due to bad posture.
No signs of muscle weakness, no signs of denervation.

Finally told me that more probable cause was BFS for the fasciculations and tremor in fingers due to compression of the crural nerve, but..., could not completly ruled out *** for now, future will tell us he said.

I am a father with 2 young children, this thing is driving me crazy. For the ones who have this for many monthes, or even years, how do you manage to go on ???

Btw sorry for my english, I am not a native speaker...
christo
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Re: One more afraid twitcher...

Postby Yuliasir on November 6th, 2012, 1:15 pm

Hi Christo,

let me tell you that fascics in the calves are considered so very common, that many of neuros even do not care if someone have that. Our leg muscles are probably the most loaded in the body (maybe except the big spinal muscles) so they often have that type of reaction.

please read BFS in a nutshell sticky post and you would see several crucial issues:

1. fascis without clinical weakness mean nothing scary. People might have fascics or have them not, this does not affect their chances to have ALS and their chances to be cleared of it.
2. As soon as you have clean EMG (generally clean, because rare fascics in the legs are not diagnostically significant) and normal physical exams (brisk reflexes also should not make you worry because they are a consequence of worrying too much about possible deadly ilness), you might be qute easy about your condition.
Doctors always perfer to follow up - that is why they say what they say, and this is normal. Your chances for ALS are the same as before the tremors - i.e., quite low, about 1 to 100 000.

I personally read all sticky posts here and that helped me to understand that my picture and typical ALS or MND pictyre are 100% different.
Also I had clean EMG, clean exam and my psychiatrist to whom I referred with fears etc. asked me to perform some simple tests (like jumping at one leg) and said - YOU JUST DO NOT FIT THE PICTURE FOR ALS (she has neurological troubles itself and even was on surgery so she knows neurology also, not only pshychiatry) - and she added that instead I fit exclusively a typical picture of health obsessed person 6))) and that in fact was very helpful. I also managed my fears with a speaking therapist and I was on SSRI and Benzos and Gabapentine consequently for aboiut 5 month in total. I was doing regular schedule. quite strict (including 8 hours of unitnerrupted sleep) and in 8 month I felt much much better.
I also knew alot about fears and anxietry from my previous life experience (I mean not a life before my actual birth 6)))) but the fact that I spent over 35 years in fears and anxiety due to GAD). That helped me to survive and helps right now.

wish you peace of mind, dear Christo,
hugs
Yulia
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Re: One more afraid twitcher...

Postby LApea on November 6th, 2012, 2:00 pm

Welcome Cristo,

I think almost everybody here has gone through, or is going through what you describe. You will find that you have to take this day by day and be realistic about how you will overcome this. I know I go through days where I feel great and feel confident in my health, then the next day I feel bad again and anxiety comes rushing back. You have already had the tests to rule out @** so you should be very confident in that.

Who knows why your neuro said that even after your tests!? I guess because nobody knows what the future holds, but your chances of having @** are like the rest of the world, slim..very slim. You're actually in a better place than most because of those clear tests, so get that disease out of your mind.

I'm sure you will be around a long long time to see your little babies grow up.

Take care, you're in the right place here.
Jay
You drown not by falling into a river, but by staying submerged in it. -Paulo Coelho
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Re: One more afraid twitcher...

Postby twitchinjohnny on November 9th, 2012, 5:25 pm

Hello, and welcome Cristo...

You need not apologize for your English. I live in the U.S. and your English is better than that of many of the natives!
Like Jay said, you're in the right place. You're amongst friends who are dealing with the exact same thing.... BFS.
I have fasciculations all over. Legs, arms, shoulders, face, butt..... you name it... it twitches! It all started in my calfs. Then it spread like wildfire. Probably fueled by anxiety.

I'm glad I have a good neurologist. Thanks to him, I know that I have a solid diagnosis of BFS. Nothing more. Nothing less. It's still annoying and unnerving. It ain't gonna' kill me, however. What you've got is BFS. It ain't gonna' kill you, either.

Like everyone else here.... I'm trying to concentrate on living.... not on worrying about dying. Enjoy today. It's all anyone has. Yesterday's gone. Tomorrow belongs to no-one. You're doing' just fine. You have BFS like the rest of us.

Cheers!

John
"If you're going through hell, keep going!"
Sir Winston Churchill
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Re: One more afraid twitcher...

Postby christo on November 13th, 2012, 8:56 am

Hey !

Thank you all for your positive posts and comments. This board is really a nice place.
christo
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Re: One more afraid twitcher...

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