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Seeking advice on starting the EDS diagnosis process

cozybunbun

683d

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

2

6

6

Chronic Generalized pain

Ehlers-Danlos Syndrome (EDS)

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Top reply
    • MelodyElaine

      681d

      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.

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    • MelodyElaine

      681d

      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.

      1

      Reply
    • AllyM3

      682d

      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!

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    • Gumbysam

      682d

      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

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      • cozybunbun

        682d

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

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        • Gumbysam

          682d

          @cozybunbun and also if doctors make you nervous you can even skip that and just order genetic collagen testing

          1

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        • Gumbysam

          682d

          @cozybunbun as you should! Always remember you are you own best expert and go in with that confidence to your doctors appointment

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☝ 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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