My hubby just was told he might have ALS Please help so scared

[Gizzmo]

The doctors started my hubby on Riluzole 50 mg Oct 6th he is doing fine on it. Just trying to get that afternoon pill in him on a 2 hour empty stomach and then wait 1 hour. He likes to snack thru out the day. Saw his doctor last week and his care team. They were surprised how good he is and the strength that he has and the mobility. He is approved and have been waiting for relyvrio 3-1 g pack since Nov 28 Talked with the Amylx team few weeks ago. But sure it will be here soon. Does any one have answers or reasoning's for why his arms are good and then become weak . Today he could reach above his head with no problem. The physical therapist said his legs and balance are good along with his strength in his hands and fingers. It is his arms muscles from biceps to the elbows and to his wrist that are very week. Does this sound how it should be?? I just don't get this it is so confusing and I want to do right by him . Its 48 years together for us I want him to calm and unstressed Thanks you for all the help

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[Nikki J]

Hi so he has been diagnosed? Clinics are giving riluzole sometimes if they suspect ALS before it is confirmed. Mine does. However the relyvrio form from amylyx calls for a diagnosis and insurance wouldn’t cover without it I am pretty sure

 

[KimT]

Did you get a second opinion from another ALS specialist? I would.

Nikki is correct. Mayo gave me Riluzole when I was "possible" ALS.

My arms tire when I shower. I even cut my hair short so I wouldn't have to hold them up for so long. Then, shortly after, they seem to recover. My hands also tremor, especially the left one which is the one that is less functional.