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undiagnosed autoimmune

Posted by jgk177 @jgk177, Sep 3 5:14pm

Has anyone been told "it's not autoimmune" and "all tests show no inflammation" but yet you KNOW it's autoimmune? I get "flares" where I have chills, gastrointestinal issues, extreme fatigue, blood shot eyes, body aches, light sensitivity, and test positive for a UTI with no growth after a culture, extreme pelvic pain, lower back pain, heart palpitations and a single spot of psorisis appeared. This has been going on for almost 2 years. I have seen more than 10 doctors, tried naturopathy, acupuncture, and now I have intense food sensitivity that rules my life. This is my life for the past 20 months.

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bevie24 | @bevie24 | Sep 7 4:19pm

Its so frustrating... I have been dealing with upper abdominal bloating, tenderness with swollen abdominal lymph nodes since March 2024. It has continued to worsen with back pain, fatigue, systemic inflammation and no local doctors are willing to help. A CT scan showed Mesenteric Panniculitis and the doctors say that it is a rare condition and just say they don't know how to treat it. It's scary that I might stay stuck with these symptoms ..
Also, in June I started with forehead swelling/ congestion, plugged ears, dizziness, vertigo. I had these exact ENT symptoms the last two years at the exact same time of year.. so weird. ENT says I do not have sinus issues or Eustachian tube dysfunction and allergist says i do not have allergies.. so what the heck is causing it to happen ? So frustrated and exhausted ! I look ok on the outside so people don't realize just how awful i feel.. so depressed

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Becky, Volunteer Mentor | @becsbuddy | Sep 9 10:24pm
In reply to @bevie24 "Its so frustrating... I have been dealing with upper abdominal bloating, tenderness with swollen abdominal lymph..." + (show)
@bevie24

Its so frustrating... I have been dealing with upper abdominal bloating, tenderness with swollen abdominal lymph nodes since March 2024. It has continued to worsen with back pain, fatigue, systemic inflammation and no local doctors are willing to help. A CT scan showed Mesenteric Panniculitis and the doctors say that it is a rare condition and just say they don't know how to treat it. It's scary that I might stay stuck with these symptoms ..
Also, in June I started with forehead swelling/ congestion, plugged ears, dizziness, vertigo. I had these exact ENT symptoms the last two years at the exact same time of year.. so weird. ENT says I do not have sinus issues or Eustachian tube dysfunction and allergist says i do not have allergies.. so what the heck is causing it to happen ? So frustrated and exhausted ! I look ok on the outside so people don't realize just how awful i feel.. so depressed

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@bevie24 Your health situation sounds just awful and I really understand why you feel so depressed. You stated that most of this started in March of this year.
Here is some information on panniculitis. After reading this, I thought I might recommend that
https://my.clevelandclinic.org/health/diseases/23910-mesenteric-panniculitis you get an appointment with a rheumatologist (specialists in autoimmune diseases). And try to get care outside your town. Can you find a university teaching hospital or comprehensive medical center near you? (You may have to drive a distance. Take as much of your medical records with you). The doctors at these medical centers are more familiar with ‘rare’ conditions. The operator or triage person who answers the phone will ask some questions to make sure that you are placed properly.
Will you keep me informed about what happens? Can you come up with some more ‘vague’ symptoms that might also be a part of what’s going on?

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fessenbeck65 | @fessenbeck65 | Sep 11 6:20pm

Have you seen an Allergist/Immunologist yet?

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