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CompassTracker

2y ago

Getting Professionally Diagnosed: What to Expect?

To those of y’all that have been professionally diagnosed, how was the process? I’m getting evaluated later this month for hEDS and my whole family is 90% sure I have it as am I. What should I expect?

Your answer

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Atatizakti

2y ago

I initially saw a geneticist that was kind of an idiot. Although I met criteria, he was hesitant to dx me because he was afraid my hypothyroidism or vegan diet were causing my symptoms. He also thought I was having seizures. He referred me to a neurologist who told me it wasn’t seizures it was dysautonomia (and did testing for it) and confirmed that I have EDS.
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100bumblebees

2y ago

I ended up having to get genetic testing done before getting my hEDS diagnosis, but before EDS was even though of, I got tested for pretty much anything else
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DrewSolazzo57

2y ago

There’s a chance they say you don’t have it… keep pushing though. It’s a long process with many false negatives

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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