Originally Posted by SylvieM

Hi Elaine,

Thanks so much for your input!

Although it has basically been a life- long struggle, I've always plowed through and had a great affect....no one knew...I've also been very energetic my whole life...and had long symptom-free periods. Yet the depth and quality of this depression, which rolled in with all my dysautonomic symptoms last April, was (is) very different. It may have been set off by a reaction to antidepressants....for I had neurological symptoms for a long time....but then again, maybe I reacted the way I did because of an underlying AI disorder. ...or a Mast Cell Activation disorder. I'm continuing to have strange reactions to all meds. I'm only on 10 mg of nortripyline...for pain and depression. Helpful but not really therapeutic ...but I can't tolerate more.

In any event, I got to reading about depression, inflammation and cytokines! All news to me, and very convincing. So interesting to get your post in light of this.

As noted, my OI and POTS are severe, and I clearly have "sickness behavior, " which both my neuro (ex-neuro as of last week) and cardiologist attribute to the dysautonomia. But I hear you....interestingly, two (brilliant) buddies I've made on this site, who have AI disorders, also think I have one too. One suggested very specific tests.

My problem now is that although I feel I need further testing for AI disorders, I'm not sure how to proceed. I've got yet another dysautonomia screen set up for March 24...and an appointment with a new neuro on the 18th. Just for the heck of it, I have an appointment with yet another new neurologist in April (I'm shopping). Yet this ain't going to help with an AI dignosis.

I saw a rheumatologist twice in the past three months....two sets of tests...nada....but she finally suggested I go to the Sjogren's clinic in Baltimore. Perhaps I should? Do you have a suggestion? You have no idea how hard it is to find really good docs here in NYC....with a plethora of major medical centers.....

Is your PN an outgrowth of an autoimmune disorder? I'm so glad to hear you are doing much better.

Once again, thank you....I so appreciate your advice and input.

Sylvie