Please Help! I'm losing it

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Please Help! I'm losing it

Postby Nicky on April 13th, 2003, 9:32 pm

Please - I need reassurance....I think these are the things I have in my favor that I don't have ALS, what do you think??? Your responses will be so appreciated, I need to get on with my life...
1. I have been twitching at various parts of my body for 7 months with no weakness
2. I first noticed the twitching in my calves, then eventually any part of my legs, and now it can be anywhere, even chin, but mostly in my hands (top between thumb and forefinger). Isn't it true that if twitching preceeds weakness, the weakness would set in as the muscle dies, then the twitching would migrate? Isn't it a good sign that one has widespread twitching (if there is no weakness)? Again I have no weakness. I run 3 miles twice a week, and lift weights twice a week.
3. Most of the time, not all, but most of the time, my hand twitching starts when using the computer.
4. I do get soreness in my hands, but not cramping. Isn't pain more of a later symptom of ALS?
5. I am 38, they started when I was 37
6. This all started when I stumbled over ALS on the net when looking up a pinched nerve
I know the best thing for me is to go to a neuro, but I am hypochondriacal, and that would be impossible right now. I have a 20 month old daughter, and I'm missing too much of her growing up with all this worry over ALS.
Thank you so much, and God bless!
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Hi Nicky

Postby reneeintx on April 13th, 2003, 10:12 pm


I belong in the same "hypochondriac" group as you. I believe time is on your side...7 months no weakness. I only have 5 behind me.
I also have all over twitching, no weakness. Nicky I know deep down we can all believe that everything is going to be fine but as of this moment we're stuck in this frightened mode. I don't know how or when we will get out of this rut. I just know some how some day we will...believe with me!!!

There's not one stinking hour that goes by that I don't think about the twitching. My hands ache, my feet feel like I'm walking on marbles(with bugs crawling on them), my eyes are real sensitive to the light. My f'in lower back aches all the time. I'm hyperthyroid and have heart palpatations this is all in addition to the twitching.

Sometimes when I'm sitting at the computer my leg with make a slight jump.. What is THIS!

I"m just the opposite of you on the doctor issue. I can't wait to go. Matter of fact I will be in his office at 10:00 Monday for a follow-up visit. I've already had an emg...clean...but still worry with the what if's. I'm 39 and thought I wouldn't have significant health problems until I was at least 60!! I stumbled upon this ALS fear looking up muscle twitching on the internet.

I hope you can find the strength to go to the neuro. It feels good to unload worries on them, at least it does for me. I just hope I don't pass out from a panic attack.. well at least I'll be in a place that's well equiped.

See if you can put your anxieties aside just for a minute to make an appointment. This is your FIRST step.

hope you are feeling better

Renee :)
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no worries Nicky!!

Postby meg on April 16th, 2003, 5:51 pm

I completely understand what you are going through!! I am a 24 year old woman who has been suffering from BFS for over 2 years now. When it started to happen too me, like pretty much everybody else on this website, I thought I was dying. My twitches started in my chest and have spread all over my body, there is not an area that is not afflicted. I went to a neurologist, had an emg, had a CT of my brain - the works. I also started having problems with my eyesight (which has turned out to be another benign condition - syneresis). Both problems manifested after a really bad cold and bladder infection. It is now believed that all this crap has a viral relation.
My neuro said that it is a good thing that the twitching isn't localized, and after 2 years I have experienced no weakness or atrophy. I know now that I don't have ALS. The more you worry about the twitching, the more you twitch. I let my worries take over my life for about 8 months and got very seriously depressed. After I was finally convinced that I wasn't dying (and believe me it took lots of convincing) I had to come to terms with the fact that this sucks, but its not fatal. I'm sure that you're going to be fine!! I know how scary this is, but there are many many people who can relate!
All the best
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Postby Kamal04 on July 21st, 2003, 7:20 pm

Hi, first of all take a deep breath and relax. Dont look up stuff on the internet unless you know what you are trying to find. Everyone who has stumbled across this site also stumbled across some site that scared them to death. ALS is generally not the case for twitching. When you go to the doctor, you will see that ALS will not even be uttered from the doctor. If your twitching started out in your legs it usually means that you are not getting enough nutrients, mainly calcium or magnesium. I would go to the doctor have them do a blood test. Also have your thyroid checked out. Twitching is really not a big deal. I cann almost positively say that everyone twitches. Relax dont try to sit there and see if another twitching spell is coming, sometimes you trick urself and you make urself think its there.
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Postby tlotoxl on July 22nd, 2003, 1:35 am

meg -- that's fascinating, i have syneresis too (though since i live in japan, i didn't know the english name for it) and it hit me around a year and a half ago, just when my twitches started to get really bad. it's a bugger, eh? it doesn't bother me like i used to, but i still have certain habits that i've developed with regards to going quickly from bright to dark rooms in order to minimize the occurances of the flashes.

wish i weren't so myopic ;) oh well, at least it's only in my right eye -- all the websites i saw suggested that the other eye would be soon to follow, but i guess when you're in your 20s perhaps the prognosis is a bit different.
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