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?
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
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.
☝ 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
Thank you! Your submission has been received!
Oops! Something went wrong while submitting the form.
Share
Copy Link
Copied
Join the Alike community
Discover your Alikeness™ with people who are on the same journey, gain wisdom and get emotional relief in a secure & anonymous space.
CompassTracker
292d
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?
2
3
Share
Psychogenic non epileptic seizure
Ehlers-Danlos Syndrome (EDS)
Hypothyroidism
DrewSolazzo57
292d
2
100bumblebees
283d
0
Atatizakti
282d
0
☝ 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