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For anyone who can't find a diagnosis: Undiagnosed Disease Network
Autoimmune Diseases | Last Active: Jan 27, 2023 | Replies (63)Comment receiving replies
@amandaburnett,
Have you applied to the UDN? What was your experience? Did you receive a diagnosis and treatment?
I would really like some feedback. Please PM me if you prefer. Thank you!
Replies to "@amandaburnett, Have you applied to the UDN? What was your experience? Did you receive a diagnosis..."
Ah yes, it took a while, but I did apply and they looked at my medical profile. They said about a dozen doctors looked through it.
They said that it seems as if it was an autoimmune disorder so I should check out a Rheumatologist. It definitely set me on the right track.
One MRI later and we found a mass inside my sinus cavity. Turns out it was leaking odd bacterial strains down my throat and threw off my entire gut flora. So one surgery later and a Low FODMAP diet plan and things seem to be getting better.
Had to get in touch with a functional medicine doctor in order to see any improvement tho. No amount of antibiotics, steroids, or pills were working. Sorry it took so long to get back to you.
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I have applied. Took 3 months to gather my 750 pages of test results and drs notes and letters. Took UDN 5 months with no response. Finally I called several times per week for a month and emailed . Was told I was rejected and would receive a letter in the mail. They said they were overwhelmed by COVID . I am devastated looking for another program. My life has now become that of a shut in. I am physically not able to do anything.