Scared!!!!

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Scared!!!!

Postby Hot Rod on April 11th, 2004, 1:59 am

Hi!
This is my first time posting but I really could need some support now! I am 36 years old and my twitching began on the 4:th of january in my left eyelid. I know eyelid twithces are usually benign so I ignored it, but i was more or less constant the following weeks, I'd guess 6-8 hours of my time awake.
On the 12:th of february one of Swedens most famous TV personalities went out to the public and told that she had ALS. One of the symptoms she mentioned was the twitching. Voila! Two days later I first had numbness and tingling in my left side followed by full body fasciculations overnight! I am normally very rational so I did some strength testing and everything was normal. The twitching didn't go away so I did the next bad thing: I searched the Internet.... Just at Swedish web pages at first and on those said NOTHING about benign fasciculations. From that moment my life has been a nightmare, even though I was very relieved when I found this forum. Last week I called my doctor for the first time to get some blood and urine samples but she wasn't able to see me until on tuesday due to easter.

I have almost all the symtoms you describe and it is constantly changing.
In the beginning i had them mostly in my left foot and calve but all over my body. Now I have them mostly in my toes with occational twitches almost everywhere.

So whats the problem you might think? This sounds just your storys but the thing is my lower eyelid is swollen it has stopped twithching... Has the muscle finally died?
To be rational: No, I can still move the lower eyelid muscle but it is hard to know if I have lost any strength or if just one of the muscle has died.

I have the same maximum strength but my left calf gets tired faster.
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Postby jcavan4125 on April 11th, 2004, 9:58 am

Hi Hot Rod,
Welcome to the forum. First off ALS almost never affects the eye muscles. In the unusual event that it does, it would be at the final stages, not in the beginning. Your symptoms sound quite typical of BFS. Remember that the hallmark of ALS is weakness, not twitching! Most patients with ALS don't even notice fasciculations because they are typically very faint, whereas with BFS they are typically strong enough to feel and sometimes even move a digit (hence the term "twitching"). In my case, I am a weightlifter and have fairly developed muscles, so when I twitch it sometimes moves more than just a digit- sometimes part of an extremity. This is a good sign not bad, it means that you have good neuromuscular activity going on. In fact, it is felt that BFS is a peripheral nerve hyperexcitability, whereas ALS is a disconnect between the nerous system and your muscles (which is why the fascicualtions are usually faint). Obviously, no one can diagnose you over the internet, but I hope this will give you some peace of mind until you see your doctor. Good Luck!
Joe... "That which does not kill us makes us stronger"! - Nietzsche
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Postby Hot Rod on April 12th, 2004, 3:30 am

My eyelid has started to twitch again...
This is making me crazy, I even got scared when I don't have symptoms!
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Postby TheyDon'tBelieveMe on April 13th, 2004, 12:03 am

Then that's proof you don't have ALS. True ALS sufferers and those of us who are credible ALS worriers don't have periods of no symptoms.
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Postby uber on April 13th, 2004, 3:17 am

hotrod...do a little research into what a twitching eyelid is a symptom of ;) ill give you a clue...its not a symptom of BFS or ALS

Chill out
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Postby Hot Rod on April 13th, 2004, 10:43 am

I went to my GP and guess what?
She didn't even think of sending me to a EMG... I have no signs of atrophy and perfect reflexes.
She said twitches are quite common and after the program on TV about she has seen quite a lot of patients with benign fasciculations!

On the other hand I have found out I have thyroid problems. My T3 was 5.8 mmol/l and normal is between 1.1 and 2.8. No wonder I am skinny though I eat as a horse!

She told me not to worry, some people have really high T3 and can live with it. I will make a new test in a month and then yearly.

I have decided to start living a better life and start to work out and stop smoking (except tires, I am a true hotrodder)!
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Postby Jenn311 on April 13th, 2004, 10:57 am

Good for you! Great news. Watch the speed though...car accidents kill more people than ALS ever will.

Jen :wink:
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Postby thetwitchkid on April 13th, 2004, 12:07 pm

Hotrod:

Good news.
Take a look at this link. I have a high T4. It may be of interest to your symptoms
http://www.neuro.wustl.edu/neuromuscula ... ypothyroid
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Postby Hot Rod on April 13th, 2004, 12:44 pm

Been there! If you do a search on faciculations on google you get 5240 hits.

At least 4000 of them visited! :)

There is no sign of an enlarged thyroid though, and no bug eyes, thank god!
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