Have you had blood tests such as the Mayo Clinic Autoimmune Dysautonomia Evaluation or the Mayo Clinic Paraneoplastic Autoantibody Evaluation?
That is how I was diagnosed with autoimmune autonomic ganglionopathy and (some) doctors started treating me seriously. I started IVIg today.
Quote:
Originally Posted by cyclelops
I read this article a while back and it is interesting. Thanks for posting it.
At one time I carried a diagnosis of AAN. I still am considered to have AN...without the other A.
I have had so many diagnoses, I do not list any of them as I don't feel any of them was accurate. It has been kind of like passing telephone poles while riding in a car.
I must have been seronegative....again. I tend towards the -opathy...not the -itis.
Getting immunomodulary treatment at $3000 per month is a hard sell to the insurance companies....
I am game to try IVIG again, but likely the effort to get it will have to be gargantuan, unless something, anything, shows some sign of autoimmunity.
In the mean time....ho hummmmm. Just sittin' here...watching the disease.
We will see what the next round of tests shows.
Thanks, again. I appreciate it.
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