I am going through something simular

I am going through something simular! No diagnoses or treatment which stinks! My doctor has referred me to Duke and I am sitting here on a waiting list!
They think I too have something Neuromuscular! But the symptoms that you are describing almost sounds like Systemic Lupus with a blood clotting factor.
I know ALS has different forms. Some can be treated while others are fatal! But there are different form of ALS. Something to do with the genetic code.
The disease can be very disabling and in some cases can be fatal.
I hope he starts to get some treatment soon. I would push those doctors and see about getting him on some meds to help relieve his misery~
Just by experience, not getting treatment, I have seen misery and it’s not fun dealing with. At least something to help him would be better than nothing at all.
I wish you my best and hope that your husband gets a diagnoses and starts to recover soon. It’s hard watching your loved one being sick! Very very hard and I admire you for being so strong for him! Good luck and God Bless!