@crystalmn. And @comptomama
I know how you feel. I got tired of doctors telling me to just rest and that I’d be ok. One even told me not to worry because “he wont be the governor forever.” I was finally diagnosed and on an up and down road to recovery.
“My experience of feeling unwell for years before I got a diagnosis turned out to be typical. According to aarda, it takes an average of nearly "ve years (and "ve doctors) for a sufferer to be given a diagnosis. Patients can end up consulting different specialists for different symptoms: a dermatologist, an endocrinologist, an immunologist, a neurologist, a rheumatologist. A lot of people with autoimmune diseases would like to see the establishment of clinical autoimmune centers, where a single doctor would coördinate and oversee a patient’s care, as at a cancer center. (Israel now has one, the "rst of its kind.) Virginia Ladd, the president and executive director of aarda, told me that funding is a problem: donors tend to give to speci"c diseases, and, because few people understand the connection between M.S. and ulcerative colitis and Hashimoto’s, no one gives to “autoimmunity” as a category. (Eighty-"ve per cent of Americans can’t name an autoimmune disease.) As it is, many clinicians assume that the patient, who is often a young woman, is just one of the “worried well.”
You have to be patient. Autoimmunity can be like a spider web—it goes in all directions and pulling it all together for a diagnosis can be elusive.
There are hospitals that are part of the Mayo Clinic network, if you would like to try one.
https://mayoclinic.org/about-mayo-clinic/care-network/members
You can also go to university medical centers or medical centers of excellence in your state.
I hope you will find some answers soon! Be patient! Will you let me know what you learn?