ALS questions?

[rowland's wife]

mustang22

my husband started out having pain and burning in his shoulders, he would get headaches. At night when he was trying to sleep was when it bothered him the most, this is one of the reasons he went to the dr to start with.He was diagnosed with Bulbar ALS in sept. We are not sure if he had the burning pain because of the work he did maybe it made his muscles ache because they were not as strong because of ALS not sure,if he had not gotten slurred speech a couple months later,i'm not sure they would have figured it out so soon. He had the muscle twitches then, but thought it was muscle spasms. He does not have the shoulder pain much anymore,he hasn't worked in awhile I think that helped. Hope yours is something else,maybe a herniated disk.

 

[mustang22]

Roland's Wife -
Did your hubby ever have tingling, buzzing in foot or limb, or electric shocks? What was the length of progression (from the onset of symptoms diagnosis)? Your post seems to relay that it was a few months?

My biceps and thighs FEEL weak, but I have as much strength now as I did back when this all started (March). I guess I would have to say my muscles constantly feel fatigued - as if I've done a bunch of lifting exericises. . .

 

[mustang22]

BethU -
My neurologist said the same thing you did about the EMG. You should go to med school!
He also said if he had any suspicion of ALS he would send me to an MDA/ALS center.

He has no idea why the tingling has all but stopped and the twitching is in its place. I guess I'll have to go to a comprehensive place to find out more. . . or I could just wait for more or worse symptoms OR maybe it will all just go away!

 

[rose]

Mustang, I knew you weren't looking for an ALS/MDA clinic per se, but had listed those resources thinking that regardless of ALS, if the MDA recommended them, then you should be able to trust their diagnostic capabilities. I hesitated to even put the MDA/ALS clinc on there, but thought I might as well as I was just copy and pasting the text into my post.

Good luck to you.

 

[mustang22]

Rose

Thank you for your help. I have actually seen a neuro with one of those groups (general neurologist, though).

I have noticed my hands trembling a lot lately, and my insides feel like they are "racing." However, I know this could be related to my anxiety about the whole twitching thing. . .

Thank you again. You are all wonderful!

Mustang

 

[Al]

Hi mustang. Have you had your thyroid checked? Trembling and racing feeling could be thyroid related.

AL.

 

[mustang22]

Al

I have been tested for thyroid issues a few times, and the doctors have just said "normal." I've never asked about specifics, although someone told me I should because you could actually have thyroid issues and the results look "normal." The last time I had testing was about 6 months ago.

Thanks, Al.