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Amyotrophic Lateral Sclerosis (ALS) Message Board

Amyotrophic Lateral Sclerosis (ALS) Board Index

Pain with ALS?
Aug 2, 2003
Can someone with experience share with me what the pain is like with ALS? I have had some wierd neurological symptoms over the past 4 months, and am still undiagnosed at this point.

Millions of fasciculations - all over my body including inside my ears and sinuses. Now I'm left with alot of aching muscles and deep nerve pain (from the overstimulation I'm guessing). The neurologists I've seen said that mine would be a rather bizzare presentation of ALS, though I don't think they can completely rule it out until they see what improvement or progession my symptoms make.

I'm actually beginning to feel better, though I am still having alot of twitches and have weakness and aching as a result - but we are talking legs, arms, back, chest - everywhere. My fascicualtions are almost impossible to see, and much of what I feel now rather than individual twitches is an all-over low level buzzing and tremor.

My twitches are always worst at night (after waking up) because my body has been still and in the same position and in contact with the bed for so long.

Two things appear to make them worse. Stretching the muscles will set them off and having the muscles in contact with something for a period of time (i.e. - bed, chair, carseat etc.) At my worst point I couldn't eat or sleep, though that has improved significantly.

I did have a neg. EMG a month ago when this was all starting. How long do most people wait to be rechecked if symptoms persist?

Sorry so many questions - still searching for answers. Does any of this sound familiar to anyone?

Thanks for your time.


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