Undiagnosed and Frustrated: Seeking Answers for My Symptoms

yes! I don't understand why it is presumed that rheumatologists are EDS specialists. I saw a couple and one almost broke my thumb because he thought he knew more about the diagnosis process than the doctor that diagnosed me.

That is definitely not the criteria. If they suspect Hypermobile EDS then the only criteria is the Beighton scale and family/medical history. Other types of EDS you can see on a blood test. I would check out the EDS Society website. They have a lot of wonderful information on the actual criteria for getting diagnosed. Always keep in mind, doctors are still taught that EDS is rare even though it has been proven not to be. They don't look for it and doubt it when they hear it because they are only thinking about what is in their textbooks. Your best defense is to become as educated on it as possible.

go with your gut girl, i haven’t been officially diagnosed with pots (but when i types in my heart issue it said relayed to pots so it pops up as pots on my profile) because i can’t get any doctors to give me the time of day to listen to what i have to say. it doesn’t matter if you don’t have this or that for a condition for example they always say that if you don’t faint you don’t have pots, which is COMPLETELY NOT TRUE!!! if you truly believe you have a certain disorder, follow your gut. you know your body and your mind. you’ve got this!🤍🤍

I would get a second opinion. Are you looking at hEDS or another type?

definitely get a second opinion. possibly ask if the clinic has EDS specialists.

Definitely get a second opinion. Many doctors are uneducated on EDS and it is a broad spectrum. I only ever sprain my right ankle and I havent in over a year. I still have EDS!