Recent content by marioneill

Ah, very good question! It was an ALS doctor, but one who diagnosed me, not who's going to treat me. A neuromuscular neurologist. I had had an EMG in May that was completely normal, and then had an appointment for treatment w/my movement disorder neurologist who suggested this other doctor -...

Tillie - thank you, I will do what you suggest and look through info about planning and coping with the diagnosis. I'm very scared b/c I was misdiagnosed for a long time and really have no clue about how long I may have. I go to my first actual ALS doctor tomorrow.

Nicki J, you mention other forums where this issue is discussed - would you please post a link to it/them? Thanks.

Pauliguy - I'd love to know about that forum too if it exists. I've just been diagnosed for 3 1/2 weeks, bulbar onset, and am really struggling with a lot of these end of life issues.