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Autoimmune Fatigue and/or Chronic Fatigue

Autoimmune Diseases | Last Active: Jan 20, 2023 | Replies (166)
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@abrown2

My son has not gotten an "official" diagnoses or treatment plan. He has been tested by loads of departments at children's, but nobody has yet to offer a name for this or how to help. His tests generally look "normal," We are still looking for a trigger cause. Lots of questions and looking at possible pieces to the puzzle, but nothing stands out. Had our house tested twice. It was suspected to be mold related, and yet, no mold in house. He could have been exposed at say, summer camp and reacted, but there are just no real direct patterns.

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Becky, Volunteer Mentor | @becsbuddy | Aug 5, 2021

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?

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