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DiscussionAutoimmune Fatigue and/or Chronic Fatigue
Autoimmune Diseases | Last Active: Jan 20, 2023 | Replies (166)Comment receiving replies
Replies to "My son has not gotten an "official" diagnoses or treatment plan. He has been tested by..."
This must be so difficult for your son @abrown2 . It sounds like it could be an autoimmune disease—they are so difficult to diagnose. I just spent the weekend with my niece who said that it took 20 years to get a diagnosis of narcolepsy. She was always tired, took multiple naps, fell asleep constantly. She said that 2 years ago she found a wonderful doctor who now manages everything. You just have to keep pushing.
I added a link to the AARDA newsletter which talked about getting a proper diagnosis. I’ll also ask members @tlgold and @goodfriends if they have anything to suggest.
https://connect.mayoclinic.org/discussion/tips-for-getting-a-proper-diagnosis-of-an-autoimmune-disease/
Have you tried going to a university teaching hospital or large medical center?