Thanks to all who responded to my original post about my husband getting initial diagnosis of 90% certainty of ALS last week.
We went to the neuro yesterday. Hubby had an EMG and it was normal! I quizzed his neuro for over an hour about all the tests for other diseases (he did tons of blood work to test for other diseases...Lymes + a zillion other things) that were all negative. We will explore even more now, plus continue to monitor with periodic EMGs as neuro still feels that symptoms are bulbar onset ALS that just hasn't manifested itself in the limbs yet.
The neuro said than in 100 cases similar to my hubby's that he has seen (bulbar onset, normal EMG) all but 1 progressed to ALS within about a year. The 1 exception is a woman who has gone 15 years without progression (...so statistically, I feel that he is due for another patient to follow this pattern :-D).
At a minimum, I feel that we have bought some time to explore diet & other options, plus be able to investigate ALS studies that are being planned & overall better prepare for what may lie ahead and, of course, pursue another opinion or 2.
Sounds like some of you have gone through something similar (JoJo?). I'm curious if you initially had normal EMGs as well? Did you have EMGs periodically to monitor? Or how did you eventually get the "final" ALS diagnosis? Anybody else at this stage right now?
Thanks for all the support. So glad this forum exists!
COlisa
Prepare for the worst, hope for the best.
We went to the neuro yesterday. Hubby had an EMG and it was normal! I quizzed his neuro for over an hour about all the tests for other diseases (he did tons of blood work to test for other diseases...Lymes + a zillion other things) that were all negative. We will explore even more now, plus continue to monitor with periodic EMGs as neuro still feels that symptoms are bulbar onset ALS that just hasn't manifested itself in the limbs yet.
The neuro said than in 100 cases similar to my hubby's that he has seen (bulbar onset, normal EMG) all but 1 progressed to ALS within about a year. The 1 exception is a woman who has gone 15 years without progression (...so statistically, I feel that he is due for another patient to follow this pattern :-D).
At a minimum, I feel that we have bought some time to explore diet & other options, plus be able to investigate ALS studies that are being planned & overall better prepare for what may lie ahead and, of course, pursue another opinion or 2.
Sounds like some of you have gone through something similar (JoJo?). I'm curious if you initially had normal EMGs as well? Did you have EMGs periodically to monitor? Or how did you eventually get the "final" ALS diagnosis? Anybody else at this stage right now?
Thanks for all the support. So glad this forum exists!
COlisa
Prepare for the worst, hope for the best.