Well, we're down to our last day of waiting. Thanks to you all and this sustaining forum, we're all ready with our list of questions, observations and requests.
My husband has finally decided he is probably in for an "official" ALS diagnosis (from the ALS Clinic Director) tomorrow. Even with the Mucinex (thank you for that advice, Max!), he's had a lot of mucous he hasn't been able to clear, and he's been choking several times a day, so we saw his primary care doc who ordered a chest Xray. Thankfully, no pneumonia, but it did note "eventration of the right hemidiaphragm." Asked his current (MSA) neuro, so she's sending note to ALS neuro. Hopefully tomorrow at the EMG/NC study he'll test the phrenic nerve as well. I've been telling them for a year that he's had fasciculations in his chest and side and has been short of breath--no surprise to learn there may be some degree of atrophy and/or paralysis now.
But my husband, ever the optimist, always sees the silver lining. Our son from So. Cal. called Sunday and my husband told him we were hoping for "some good news" on Thursday. I laughed and asked, "How many people would consider ALS 'good news?'" :?:
But we both know it is what it is, and not naming it means not treating it and trying to keep working. He's been so long with it without a diagnosis, it will actually be something of a relief for all of us just to know. And then we can move out of limbo and into the next phase.
Thanks again for all your advice and the models of strength and encouragement you are to everyone who comes here.
Cindy
