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Aria17's Post

Aria17

Updated 5mo ago

Seeking Insight on Possible Autoimmune Disorder Diagnosis

I'm trying to get a diagnosis and would welcome any insight you might have. Based on the wide array of symptoms and pain without any history of injury, I suspect some kind of autoimmune disorder. My migraines became chronic last year after prolonged (8+ months, unknown) mold exposure; this has also worsened my stomach symptoms drastically. I've been having widespread pain and fatigue for the last 12 years with no explanation or comprehensive diagnosis, but can't get any answers because "my test results are normal." Any advice on getting doctors to take this seriously?

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goblin49

A common blood test called ANA is a popular positive result for autoimmune conditions: I would check to see if you have had that done first. Regardless, I would continue to push to see a rheumatologist. I had to see 3 different ones before I got the referrals and stuff that I needed. I know it is hard to keep pushing through the healthcare system, but patience is on your side and will help you get the answers you need. In addition, doing your own thorough research can't hurt! It will help you advocate for yourself and confront providers if necessary. Hope this helps!

Aria17

Thank you! I am seeing a rheumatologist next month; saw them 3 years ago and got a "labs came back normal, try stronger Tylenol" so I'll definitely ask about the ANA. I have a different rheumatologist on deck in case I need a second opinion. Really hoping one of them comes through!

BoneDustWoman

I'm in the same situation, except it was covid that triggered it for me. My ANA and rheumatoid factor test results were negative, but the same thing happened to a friend of mine with a recently diagnosed autoimmune disorder who's been suffering symptoms for six years. So, regardless of the test results, keep pushing for answers.

pixelpup

i'd get a lyme test. lyme is known as the "great imitator" because of its ability to mimic other diseases.

Teal100

Hypermobility and eds could be worth a look.

Aria17

5mo

Just wanted to come back and say I got a diagnosis, and it is in fact hEDS!

Greensy

Have you done a detox using binders for the mold? It’s good that you have that insight that mold was the root cause of the migraines. It sounds like you might be experiencing a lot of inflammation, so you can mitigate that by taking turmeric or even steroids. A functional medicine doc will look into the root cause of your other symptoms, and then address that rather than suppressing the symptoms. “Drjessmd” on tiktok is very informative. She also has a website and an Instagram account where she shares more longform blog posts about topics.

The content in this post is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition.

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Seeking Insight on Possible Autoimmune Disorder Diagnosis