TomR1972
Active member
- Joined
- Mar 25, 2007
- Messages
- 55
- Reason
- PALS
- Country
- US
- State
- Ca
- City
- San Jose
First off I don't post much do to the fact that I would probably be too negative and don't need to put that on all of you. You guys/gals are amazing, very much admire your courage!
I was told about 3 months ago from a Stanford Neuro who specialized in ALS that he is 99.9% sure I don't have it. But all he gave me was an in office exam and looked at my only 1/2 done emg by a regular neuro. Mind you a neuro that he knows and says is a great Dr. However it was his assistant that did the EMG/NCV and even she couldn't get the noise on the machine to go away in my bad leg. However the results still stated normal, not sure how that can be possible.
Anyhow about a month ago I noticed I was getting a bit tongue tied. My tongue feels like it aches, burns, hurts. My jaw feels the same way. I don't wake up with this too much and it gets worse the more I swallow or talk. My tongue quivers very very little in my mouth at rest but it was doing that during my in office exam at stanford and they made no issue of it.
I go back next week I believe and will go through and extensive EMG/NCV with them shortly thereafter I hope. I believe I will be diagnosed with ALS. The only saving grace I have is this:
The aches and pains I had in other parts ---left shoulder to thumb, right leg, thumb and index finger, were very bad at times and now I would say if not for the speech/tongue throat issues I'd be at about 97%. I have had different things pop up and nearly go away but are somewhat always around just wax and wane with an overall better trend. Yet more things alway appear. I don't thing ALS acts in this manner but then when you read one publication and compare with the actual ALS community there are differences. I can only hope to god I have MG instead of ALS at this point but the painfull tongue and jaw never comes up in a search for MG. I have read of people with those symptoms but its always ALS. I may be part of this group very soon.
Thanks,
Tom R
I was told about 3 months ago from a Stanford Neuro who specialized in ALS that he is 99.9% sure I don't have it. But all he gave me was an in office exam and looked at my only 1/2 done emg by a regular neuro. Mind you a neuro that he knows and says is a great Dr. However it was his assistant that did the EMG/NCV and even she couldn't get the noise on the machine to go away in my bad leg. However the results still stated normal, not sure how that can be possible.
Anyhow about a month ago I noticed I was getting a bit tongue tied. My tongue feels like it aches, burns, hurts. My jaw feels the same way. I don't wake up with this too much and it gets worse the more I swallow or talk. My tongue quivers very very little in my mouth at rest but it was doing that during my in office exam at stanford and they made no issue of it.
I go back next week I believe and will go through and extensive EMG/NCV with them shortly thereafter I hope. I believe I will be diagnosed with ALS. The only saving grace I have is this:
The aches and pains I had in other parts ---left shoulder to thumb, right leg, thumb and index finger, were very bad at times and now I would say if not for the speech/tongue throat issues I'd be at about 97%. I have had different things pop up and nearly go away but are somewhat always around just wax and wane with an overall better trend. Yet more things alway appear. I don't thing ALS acts in this manner but then when you read one publication and compare with the actual ALS community there are differences. I can only hope to god I have MG instead of ALS at this point but the painfull tongue and jaw never comes up in a search for MG. I have read of people with those symptoms but its always ALS. I may be part of this group very soon.
Thanks,
Tom R