cecilirv
New member
- Joined
- Nov 29, 2018
- Messages
- 6
- Reason
- Learn about ALS
- Country
- US
- State
- NJ
- City
- Hackensack
Hi all, sorry for the long post but need to get it out... I have been lurking for a few weeks now. I have had twitching- mainly in the calves/thighs/butt- for 2-3 weeks now. Had been mainly in my quad next to my knee but rarely it twitches there now. Legs are pretty much non stop at rest (unless I take a Xanex, I feel as though they subside a little, or maybe just don't notice each/every one?). I get twitches in the arms/back/stomach as well but not as often. Got head/neck/lower back MRI which came back normal, as did all blood tests, "unfortunately"... I am set to see an ALS specialist in NYC in a week or two.
Have seen a neuro twice who does not see anything physically wrong with me after all of the physical tests- my legs are a little bit weak, but nothing of note. Could be due to my 24/7 anxiety now and lack of sleep from worrying. I feel like my voice is a little weaker than normal and have a little bit of a lump but no issue swallowing really. I always yawn a lot but recently yawning has been relentless, one after another. These could also just be in my head at this point. Other odd "symptoms" are a burning sensation/ pins and needles in my legs, usually after a lot of physical activity (and the twitching coincidentally mostly stops during this burning phase).
The Neuro told me I could get an EMG for 'further reassurance' which I did and sure enough, came back abnormal below my knees on both legs, the nerve part was fine but I understand that doesn't have much to do with ALS. Upper legs looked ok but were somewhat inconclusive, and I believe the lower back/groin were also normal. The Neuro "still doesn't think it is ALS" and "could very well be other things" but from what I've convinced myself it seems pretty spot on. He also said it could potentially be "nothing". Not sure if he is just trying to make me feel better or not before I go to the ALS specialist, or this is his way of saying- "it's not ALS.....yet"
I anticipate at Columbia NYC they will do the EMG on the whole body and we'll take it from there.
My question after all of this is: in all of your experiences are there instances where twitching + abnormal EMG don't always eventually lead to an ALS diagnosis? Could it realistically be something else? I just feel like I am delaying the inevitable and waiting for the next shoe to fall. I'm only 30 and just starting my life/family so you can imagine this has been a very stressful time. Thanks for reading.
Have seen a neuro twice who does not see anything physically wrong with me after all of the physical tests- my legs are a little bit weak, but nothing of note. Could be due to my 24/7 anxiety now and lack of sleep from worrying. I feel like my voice is a little weaker than normal and have a little bit of a lump but no issue swallowing really. I always yawn a lot but recently yawning has been relentless, one after another. These could also just be in my head at this point. Other odd "symptoms" are a burning sensation/ pins and needles in my legs, usually after a lot of physical activity (and the twitching coincidentally mostly stops during this burning phase).
The Neuro told me I could get an EMG for 'further reassurance' which I did and sure enough, came back abnormal below my knees on both legs, the nerve part was fine but I understand that doesn't have much to do with ALS. Upper legs looked ok but were somewhat inconclusive, and I believe the lower back/groin were also normal. The Neuro "still doesn't think it is ALS" and "could very well be other things" but from what I've convinced myself it seems pretty spot on. He also said it could potentially be "nothing". Not sure if he is just trying to make me feel better or not before I go to the ALS specialist, or this is his way of saying- "it's not ALS.....yet"
I anticipate at Columbia NYC they will do the EMG on the whole body and we'll take it from there.
My question after all of this is: in all of your experiences are there instances where twitching + abnormal EMG don't always eventually lead to an ALS diagnosis? Could it realistically be something else? I just feel like I am delaying the inevitable and waiting for the next shoe to fall. I'm only 30 and just starting my life/family so you can imagine this has been a very stressful time. Thanks for reading.