pain with ALS? - Amyotrophic Lateral Sclerosis (ALS) Message Board

kael · 08-02-2003, 10:58 AM

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.

K

slaughter17 · 08-07-2003, 08:49 PM

To answer your question, typically there is no pain with ALS. There is some mucsle spasms that can be very painful and annoying. I don't have ALS, so I can't tell you from experience. But, my father passed away from this horrible disease June 25th of this year. I was with him every day. From the day he was diagnosed, until the day he died. He used to tell me his mucsles would go into spasms like a charlie horse. His weakness evenutally got to the point where it was painful at times to walk. The emotional pain is constantly there. It effects you very much in that way as the disease progresses. Day by day your body stops doing the things you used to do. It gets frustrating and it hurts to see someone you love go through it. I have to say I think besides physically, emotionally it takes a lot out of you and your family.

kael · 08-08-2003, 09:52 AM

Slaughter - thank you for repying to my message - I now know that I don't have ALS. I have learned alot from posting and reading here though, but I have to tell you - you are a caring, loving, thoughtful and courageous person and I have been moved by how you express yourself and the experiences you have been through. You are an angel on Earth and I have no doubt that this is part of your higher purpose here.

I am so sorry for your loss, but I am grateful for you!

Thank You,
Kael