Thanks for your post, JJ. The link was edited out, so I can't see it. Feel free to send if to me via a PM, if that's possible. I'm early on in the process, with a good neurologist and only recently saw the rheumatologist as you can see. I'll know the test results next week.
Were you ever diagnosed with a specific autoimmune disorder? The problem is that if one isn't, then it's just a general category of idiopathic. I'm not sure if a physician, or many, are willing to diagnose one with autoimmune idiopathic unless they can pin down a specific autoimmune disorder. I have both sensory and autonomic issues, so small fiber polyneuropathy.
I'll look into that panel and see what my neuro thinks, when I see him again. Thanks.
I suppose I'm curious whether you were diagnose with anything specific, and if so, what treatment you're receiving exactly, IVIG, steroids, etc. So far, I've gone all natural.
Quote:
Originally Posted by JJ33
Hi David,
I briefly read thru some of your posts about your inability to get a diagnosis. I have autoimmune autonomic neuropathy, and it took me several years of seeing doctors until I found someone who knew what tests to run. I also take supplements to help my nerves heal. I am happy to share some of my experiences with you. As you probably know by now, there are very few doctors that know about or are interested in autoimmune autonomic neuropathy. Have you looked at the list of doctors on *edit* Look under "connect" to find a doctor, it might give you a place to start. I don't know what part of the world you are in, but this website lists doctors from all around the world. For example, my doctor ran a dysautonomia panel by sending my serum to Mayo: look up "Mayo dysautonomia panel" to see the long list of antibodies that can cause this. I tested positive for GAD65 antibodies. Suddenly my other doctors realized I didn't have "anxiety" causing my symptoms. I started treatment and I have been improving. But it is still a long haul. It is very important to be diagnosed because things worsen and spread. I wish you luck, please lmk if I can help, since it sounds like you may be on the same path as I am.
JJ
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