Need opinions help

[Nikki J]

Which came first the pain caused immobility or you were immobile due to weakness and then got pain? Being bed bound however comfortable the bed isn’t good for you. My sister who was completely paralyzed was still out of bed every day. So was my mother

 

[Tim1987]

I remember it was twitching. Then the pain, then the weakness over. I can't.
Remember if the twitching or the pain was first but I do know the pain was before the weakness

 

[Nikki J]

That “s odd for als and probably why they tried so many other treatments. Of course you could have 2 things wrong with you. Again sorry for all you are going through. Do you have other family with c9 presentations? Are they also atypical?

 

[Tim1987]

I don't know.
Anybody in my family with any symptoms or with the disease. To my understanding, I don't have any reflexes when they check it with the Taylor hammer in my arms, in my legs are normal reflexes to my understanding