Nikki J
Moderator
- Joined
- Mar 22, 2012
- Messages
- 16,384
- Reason
- PALS
- Diagnosis
- 04/2014
- Country
- US
- State
- MA
- City
- Boston
We certainly have had people go to the various Mayos. Are you going to Rochester? I do think you need to get confirmation especially as I believe only one neuro said ALS? It is my opinion anyway you need 2 ALS specialist university level opinions to concur before accepting a diagnosis. About 10 percent of initial ALS diagnoses are overturned and although some were by non specialist neuros not all were. Everyone is human and diagnoses can be wrong and they can be missed. I think it is fine and appropriate to let your husband do the appointments for you.
one question to ask the doctor on Friday if he continues to be sure of your diagnosis is whether you can start riluzole It doesn’t usually need a prior authorization. I hear Mass General where I go has started prescribing it for people for whom their clinical suspicion is high while they are waiting for all the tests to come back
one question to ask the doctor on Friday if he continues to be sure of your diagnosis is whether you can start riluzole It doesn’t usually need a prior authorization. I hear Mass General where I go has started prescribing it for people for whom their clinical suspicion is high while they are waiting for all the tests to come back