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What were you diagnosed with before you found your true diagnosis?

Top reply
    • chronicallyfab

      852d

      My very first diagnosis was IBS and Chronic Migraine shortly after that. Doctors ran tests for everything from MS, narcolepsy, lupus and Graves disease (plus countless others). It wasn’t until I received a Cystocele and Rectocele diagnosis from my OBGYN that they caught on to what was going on. Roughly 8 years and three dozen doctors later I got a hEDS diagnosis from a geneticist. It took a lot of self advocacy and personal research and I’m still learning how to manage living with a rare disease, but I’m so thankful to no longer be searching to answers.

    • Loocifer

      852d

      Poland syndrome, scoliosis, costochondritis, anxiety, depression, hip dysplasia, vertigo, psoriasis, gluten allergy, countless sprains, and just general overarching joint instability. When you have a preexisting genetic anomaly (Poland syndrome- for me) people don’t look further than that “obvious” answer. It’s super frustrating and really dehumanizing but you know your body more than anyone else. Keep searching and find someone who will listen. The type of pain we deal with on a day to day basis is not normal, and while you feel like you are going crazy in this maze of a system. You are NOT crazy 💕 finding community is key.

    • Bijoux_bean22

      852d

      First I was accused of faking and told to just keep working (I was 16, this statement was not cool) then a cyst, then tendon inflammation, was also told it might be EDS but if I don’t try ibprophen ( I am allergic) there is no way to know. I finally got diagnosed with hEDS after 12 years of thinking I was making stuff up for attention.

    • chronicallyfab

      852d

      My very first diagnosis was IBS and Chronic Migraine shortly after that. Doctors ran tests for everything from MS, narcolepsy, lupus and Graves disease (plus countless others). It wasn’t until I received a Cystocele and Rectocele diagnosis from my OBGYN that they caught on to what was going on. Roughly 8 years and three dozen doctors later I got a hEDS diagnosis from a geneticist. It took a lot of self advocacy and personal research and I’m still learning how to manage living with a rare disease, but I’m so thankful to no longer be searching to answers.

☝ This content is generated by our users and it is not a substitute for professional medical advice. Please consult with your physician before making any medical decision

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