I have read and re-read everyone's responses, and appreciate each and evey one of them, but they're telling me I don't have ALS without directly addressing the concerns that are leading me to ALS in the first place. Nobody is obsessing here.
I have three questions:
-can an EMG anywhere on the body, detect ALS anywhere in the body? My neuro told me an EMG on my left arm would detect abnormalities in my right.
-is it typical for multiple body parts to be affected at once (swallowing, hand, balance, Fasciculations all over) without one of those body parts first becoming severily disabled?
-how did ALS affect your hands? Could you see the muscles spasming in your hand? We're the pinky and ring fingers the first to go?
Think Wright missed one of your questions... The last.
In the hands, most OFTEN, ALS affects the thumb and forefinger. That is normally the first place atrophy is seen as well.
You mention doctors floating ALS around--did one float ALS to you or did you ASK if it could be ALS?
The GOOD sign for you (and just one of them, there are multiple) is ALS starts in one area--not body-wide. It doesn't affect every muscle to the same degree at the same time.
You mentioned only one person had answered you--at least 4 in this thread alone did.
I'll say again--the most common cause of issues in the ring and pinky fingers is a pinched nerve. It's almost ALWAYS a pinched nerve--whether in the elbow region or in the wrist or in the neck.
Hope between all of us--we've alleviated the fear of ALS. Good luck to you. Oh and a last comment--Ottawa is one of the nicest people here--if you've managed to annoy her--you're probably one of the first to do so. She's an absolute sweetheart--WITH A DISEASE that's insidious and unrelenting--that started in her hands--yet she is still here typing answers to you and those like you with questions--so a little understanding goes a LONG way on your side.
I don't have an ALS diagnosis-but I've lost 90% of my dominant hand at my last doc visit, 75% strength loss of the other--and I too am answering your questions.
I'm personally in limbo land--they have absolutely no clue what is wrong with me--only that something is. Want to talk anxiety regarding issues? I've been at the 'figure it out' phase for over two years--and my issues started with a hand that didn't work--I went to the doctor because I did not have the strength in my fingers to push buttons on a car door--it wasn't hard, it wasn't painful--it simply could not be done.
It was a few months after the first neurosurgeon looked at me that the spasticity, hyper reflexes, etc were noted by an ALS specialist--and she STILL can't say what I have--and she's an ALS specialist. See my point?
EVERY doctor and neuro I saw mentioned ALS--the Neurosurgeon was sure it was ALS--I have the report saying so---but to date--it's not as the EMG doesn't support ALS in any but ONE LIMB--and that isn't enough for an ALS diagnosis--why? Because ALS is one of countless issues that causes the kinds of symptoms I'm having--and it's the LEAST likely of them all.
Personally I'm content that right now, today, I have not been diagnosed with a disease that comes with a potential death sentence.
I spent months like you, obsessing that I had ALS. I had good reason to be worried--but I realized I was so busy being worried I forgot all about living. So my solution? I haven't seen a doctor in a year for more than my medications. No more EMGs. No more tests. If it IS ALS that I have--it will become apparent on its own time..in the meantime, I've chosen to live. I have that luxury--and so do you.
Many here have a shadow over their heads because they KNOW what is wrong with them and that it's almost always fatal pretty darn quickly.
Please--don't think I'm bashing you--I'm not--but perhaps I can help with a little perspective.
We are trying to reassure you--but we can only say "No, it doesn't sound like ALS" so many times before it begins to feel like beating our head against the wall.
