Originally Posted by SylvieM

Dear fellow NT'ers

Well, I just feel too sick to keep tooling around NYC looking in vain for a good team and a treatment plan, so I began the process of going to the Cleveland Clinic. I'm seeking a comprehensive treatment approach and testing for: autonomic/sensory neuropathy, Mast Cell Activation Syndrome, depression, possible Ehlers Danlos Syndrome, and/or any other autoimmunological explanation for my very debilitating symptoms.

I'm particularly frustrated that my rheumatologist referred me to Hopkins for a Sjogrens lip biopsy, my big cheese Columbia dysautonomia specialist's advice (for $800) is to "keep moving," and apparently the only specialist who does MCAS testing, Anne Maitland, is not taking patients (her office referred me to Boston). I've made many, many phone calls, just saw my third (uncommunicative) neurologist, and I feel stuck in this big city with so many teaching hospitals...

Has anyone gone the CC route? Your advice, experiences, and alternative suggestions are so welcome. Thank you!

S