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Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of, and finding treatments for, complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia, long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.
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Thanks, I will be watching this thread for you experiences. Best of luck!I'll report back.
I would call this one of the best experiences so far. Treating physician was the head of the department and clearly was very smart and had seen a lot of things in his life as a doctor. With no obvious diagnosis, I was asked how I wanted to proceed. We ordered a few more labs and ordered an EMG, tilt table, and autonomic function testing. His opinion is that at the very least, it excludes a whole bunch of causes and provides more support for whatever diagnosis are suspected by excluding others. we would discuss results by message and if appropriate schedule another visit. (or possibly get referred to another specialty)
This is not a CFS clinic. They do not have a procedure for diagnosis. Nonetheless, think this will be very useful in getting referred around Ohio State medical center, especially if nothing obvious stands out in our testing. At the very least, it will exclude a whole group or possible causes. Physician was in agreement with treating with anti-virals when most other causes have been excluded.