Seeking advice on starting the EDS diagnosis process

I'm hoping to start the diagnosis process this year. The pieces all start to click together last year when multiple friends familiar with EDS began pointing out my symptoms. I went through a lot of medical neglect and just got insurance last year, so just figuring out how to make appointments and what warrants an appointment has been overwhelming. So if anyone has any advice on how to talk to my PNP I really need it. I'm scared I won't be taken seriously

Your answer

MelodyElaine

2y ago

I experienced the same thing! I started keeping a journal of my pain, feelings, symptoms and brought it to EVERY appointment I had: general, PT, specialists. The other thing I did was print out the hEDS form (you can Google it) and fill out what I could to show doctors I wasn't joking. I also brought an old shoe at one point to show my ankle/feet issues. Evidence to overwhelm the gaslighting usually seems to help.

AllyM3

2y ago

I was diagnosed a few months after I was born but I know my parents were extremely impressed with how quickly and seriously the University of Minnesota Medical diagnosed me and soon after my dad. I’m sure there is some way to contact them and maybe get a referral with a doctor in your area that would take your symptoms serious!

Gumbysam

2y ago

I know what you mean - I was medically gaslit for yearsssss and didn’t actually receive a diagnosis until I was 30 - my personal experience - I bought the book Disjointed - wrote down all of my symptoms and put a post it on the pages for reference and then popped both of my shoulders out for my doc which was enough hahaha

cozybunbun

2y ago

every time someone points out something I Google it and write it in my phone notes 😅

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