Well, the visit was pretty much as I anticipated. My FVC went from 60 to 51, and my arm and hand strength was down. Most disappointing, I am now below the FVC requirements for trials, and they are just starting some there.
It seems every muscle in my body started cramping when they did the strength tests. I feel like a train has run over me 2 days later.
I hope I start to recover some strength.
Some interesting info from the doctors:
How many of you have constant runny noses-like a perpetual allergy. probably contributes to mucus. When I mentioned this to her she said that many of her ALS patients tell her the same thing. Apparently the disease does much more than just kill off motor neurons.
Also my left foot often turns blue for a while. The neurologist said that a secondary effect of the neuron damage is that capillaries lose the ability to dilate or contract at the proper times. Probably why we feel so cold or hot.