Dear I,

I'm so sorry you are feeling so unwell....I know disheartening it can be to be without a clear understanding of why you are feeling the way you are.

You write that you are not (yet) diagnosed with any type of autonomic disorder....yet you awaiting the results of your biopsies....but have you had a tilt table test? I was unaware I had such profound orthostatic intolerance....which explained a lot of my fatigue and other symptoms. I'm actually going to shell out more money to repeat the tests at the NYU dysautonomia center. They do concurrent testing of catecholamine levels....which may lead to more targeted treatment. However, you and I both know that effective treatment for this, even with more information, is elusive. However, measuring these levels might provide insight into anxiety and other hyperadrenergic issues.

Given your sensitivity to meds, you might also wish to look into Mast Cell Activation Disorder. (big thread here below....also several websites and forums on line). I'm having trouble getting a sponsoring doc for testing...for no specialists in all of NYC, but it's on the list.

A key goal of mine is to get my depression and anxiety more in check...I've had much spontaneous improvement since last April, when all of this hit....but I know I have a way to go, and it's essential to face this illness feeling emotionally stronger. A tall order! Talk therapy, as well as body work and massage are so helpful to me.....as you know, I have to be wary of meds.

This forum has been so helpful to me.....so many smart and experienced people here...I hope they weigh in for you.....for I'm still new to all of this.

So, as I tell myself today, because this has been a really tough week for me, just be kind to yourself and try to keep your strength and optimism up....for I know there are a number of people on this site who have been far sicker far longer than I have....and they have not only found helpful doctors, but more accurate diagnoses and helpful treatment....and they have the knowledge and compassion to help folks like me.

All my best,
Sylvie