Kim, while I know it isn't sound advice, I understand why you don't want to pursue more useless testing. One thing I know about ALS is, the diagnosis cannot be made until the necessary test results are there, no matter how probable the ALS diagnosis is... and we all read about PLS, and the nightmare getting to that d.i.a.g.n.o.s.i.s. often is. So, if you can handle waiting longer, and feel it's best, you have my empathy. I also had a time of waiting between my first and second visits to the EMG dept...a longer than necessary time due to my being fed up with no clue and no information...which may, upon reflection, have been just as well. I was totally blindsided with ALS.
Hospice has not begun. I'm having a serene day after yesterday hearing that due to a total lack of communication at our three-physician Neuro office (one neuro, but no office workers have a clue about the clinic), and poor enunciation which told the hospice worker I wasn't ordered hospice by a combination name--using one real name hooked into the first syllable of a second doctor, neither of which is the Clinic doctor--it's on hold until Monday at least, when the ALSA worker who thought she'd arranged this, will be asked again. If you can follow this and it makes any sense, I'm impressed. If I hadn't been so dumbfounded, I'd have had the coordinating nurse at the clinic brought into the mix--she'd get it straightened out. Unfortunately, that idea came to me this morning...and our hospice isn't up for this kind of business on Saturday.