Coping with Twitching & ALS Fear

GinniferLynne

Well-known member
Hi. I have been reading a lot of your posts over the past few weeks, and have always felt better afterwards. However, my twitching persists, and I am still very scared of ALS. I started twitching last September, now about 8 months ago, while I was pregnant. I ended up miscarrying later that month, but the twitching didn't stop. It started in my left eye, and was the worst in the abdominal area. I kind of forgot about it, and later, in December, I noticed that my feet (undersoles) would twitch after a long run. I was running a lot at the time, and decided that maybe I tied my shoes too tight or something. Anyway, I should give some background. I graduated from college 7 years ago, and moved overseas. I married quickly, divorced, and then met the guy of my dreams. We moved around together (he was a military officer), and I had 2 miscarriages early in our marriage. He went to Afghanistan shortly after I found out I was pregnant for a 3rd time, and I had our daughter 2 months after he came back from the desert. I had a c-section, and shortly after developed chest pains and anxiety. I had many tests done, only to find out I was highly anxious. So, in February he left again, this time for war in Iraq. I took care of my daughter and his soldiers spouses, and he came home a month before we moved to Boston for him to start a very prestigous business school. I had a few more panic/anxiety attacks, had a stress test, thallium stress test..the works for the chest pain. That brings me to the September pregnancy which also ended in miscarriage (now my 3rd). We found out we all carry cystic fibrosis, and now know that any future pregnancies, if natural, will have that hanging over our heads. We had our daughter tested..an excrutiating week of waiting to find out she is only a carrier too. So, to make a long story sort of short, I had a LOT of stress leading up to the twitching. I was sick for over 2 months with a viral chest thing, sort of like a cold but worse, and then my daughter got really sick in February. The week after she was better, I had only slept a few hours while she was sick, I started twitching ALL OVER. It was mainly in my calves, and continued in my feet, but basically if I had a muscle, it was twitching. The calves feel like popcorn, the feet too. The arms happen when I bend them or apply pressure, and it all gets worse after running and drinking caffiene. I made the mistake of looking up "twitching", and now have an intense fear of ALS. I had an appointment with a Harvard/MIT neurologist, who, after an exam only, insists it is benign. I guess he could tell from having no weakness or reflex changes. He didn't want me to have an EMG. The twitches persisted, so I saw him again a month later. He still believes all of this is benign, caused maybe by anxiety and made worse by exercise. I now have them in my mouth, around my lips, and my joints seem to be stiff and sore. I get sore in my hands and fingers after being on the computer or doing any lifting. Does any of this sound familiar, or am I doomed? I've been taking Ativan to get through the worry, but want to stop to try to have another kid.
Any advice from the long time twitchers? I don't have trouble breathing/swallowing, talking, running, walking, typing or anything else, and I can still lift the same amount in the gym when I allow myself to try.

Please help!
 
14 mos twitching for me.

I can still run, lift weights, etc., but still worry over this. I probably should have never gone "quite so deep" into researching ALS, I would have been better off mentally.

I think it is a fear that once it becomes rooted, it is VERY hard to let go of. It's such a devastating disease, and we all (at least on this board) suffer from one symptom of it.

I know I've never worried this much about anything in my life.

Listen to your neuro. I haven't even seen one yet (just my GP) Especially if this neuro is a Harvard neuro. You can't get much better than that!

Ginny

PS my calves twitch 24/7
 
I wouldn't worry about als w/a normal neuro exam. Most als patients who twitch never even feel them and by then they would have profound weakness and reflex changes. I started twitching while preg. too (every second 24/7 for almost 3 yrs). Anxiety and stress can lead to a wide variety of strange symptoms. Twitching w/out profound weakness is considered benign and far more common than you think.
 

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