Do not know how to pray for this

October 11, 2008 at 10:37 am

Maybe impossible: My husband was misdiagnosed. Not cidp which I wish it were.
He has Familial Amyloidosis, means an inherited Amyloidosis. Attacks the organs not the nerves. 2nd opinion did a genetic (dna) test but even before any testing he said the emgs did not prove cidp to him. Amazing. I cannot speak about the former neuro right now. It was our last appt with him on Fri. and I would have liked to have said more. Bill was quiet. Do not understand as he said there is no reason to make yourself upsent. Cannot do anything about it. The only thing I can say is he may be hiding his emotions from me. I am tired of keeping my crying away from him. He needs to talk to me.
Thanks to all of you

Only treatment is liver transplant. Very rare disease but Thomas said he does not do dna as Medicare does not pay for it.