Hi Everyone,
Terrible day as you all know from experience. My husband was diagnosed today with early onset bulbar ALS, slow progression. The neuro wants to do another EMG (his have been clean so far) in 6 months, encourages a 2nd opinion, wants him to start Rilutek and a clinical trial of Talepenal, and simply said that the longer it takes for anything to happen in the limbs, the better.
The main trigger symptoms for her were weight loss and swallowing difficulty.
While she has slotted the Dx as "possible ALS" on the El Escorial chart (which according to those criteria means it's also possible you have something else), she is "absolutely convinced, without a shadow of a doubt" that this is the correct diagnosis.
The MRI is apparently enough to rule out any mimics of ALS, and the reason she sounds so sure is that they just can't find anything else it could be.
Horrible, horrible to hear that "you definitely will lose your voice" (my husband is an attorney) and "it's positive that you have an early diagnosis as you can attack weight loss immediately" and "your quality of life won't immediately plummet."
Well, there it is. We're both in shock. We have a nine-year-old daughter who has been very anxious recently, possibly picking up more on my stress than on the reality of her father's symptoms.
Take care, you all,
Erica/Perplexed
Terrible day as you all know from experience. My husband was diagnosed today with early onset bulbar ALS, slow progression. The neuro wants to do another EMG (his have been clean so far) in 6 months, encourages a 2nd opinion, wants him to start Rilutek and a clinical trial of Talepenal, and simply said that the longer it takes for anything to happen in the limbs, the better.
The main trigger symptoms for her were weight loss and swallowing difficulty.
While she has slotted the Dx as "possible ALS" on the El Escorial chart (which according to those criteria means it's also possible you have something else), she is "absolutely convinced, without a shadow of a doubt" that this is the correct diagnosis.
The MRI is apparently enough to rule out any mimics of ALS, and the reason she sounds so sure is that they just can't find anything else it could be.
Horrible, horrible to hear that "you definitely will lose your voice" (my husband is an attorney) and "it's positive that you have an early diagnosis as you can attack weight loss immediately" and "your quality of life won't immediately plummet."
Well, there it is. We're both in shock. We have a nine-year-old daughter who has been very anxious recently, possibly picking up more on my stress than on the reality of her father's symptoms.
Take care, you all,
Erica/Perplexed