People with rare conditions, how do you go about bringing it up with your doctor before you’re diagnosed? I am at this point entirely sure I have Ehlers Danlos Syndrome, but I score low on the Beighton scale and I don’t even know if my doctor knows about it. I have a list of weird bendy things I can do and other symptoms, but I’m so terrified I’m going to get shut down or even dropped. Part of me wonders if it’s even worth all the pain and frustration and anxiety.

Chronic Generalized pain

Anxiety (Including GAD)

Generalized pain

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  • Cece7


    So a couple years ago I had a really rare tumor that I felt in my arm. I told my doctor I had this lump and she could barely feel it there but I knew that something was wrong. She said to try PT and see if the pain goes away. She said tumors like that were too rare and didn’t suspect anything. I went to the PT and they told me that it doesn’t feel like any issue they can fix and that I should talk to my doctor. I lied to my doctor and said the PT recommended getting an ultra sound right away because my doctor was so hesitant to do things. They did the ultra sound and later an MRI and found I did have a benign tumor. I had to push and push to finally get diagnosed and my doctor didn’t know much about the diagnosis I could tell, it was a lot nicer talking to the surgeon who really understood things. And I really had to just keep demanding they do something until I was diagnosed. It’s stupid that you really have to fight for your own health but luckily I did because otherwise I would’ve lost the use of my hand if I just left it alone from where the tumor was located. I would recommend you just tell your doctor. Push and push to get something tested or diagnosed. If it’s not, or you feel what they’re saying isn’t good enough, go to a specialist who truly knows the sort of issue you’re discussing. If you feel no one is diagnosing you properly I would keep demanding to talk to different doctors until you feel like someone is really on the same page as you and treating your issue properly. It’s a long process sometimes but worth knowing what’s going on with your body.

    • rj.crow


      I appreciate that. I’m still worried because I’ve already been through a few doctors and specialists for a different issue and they never helped, but my new doctor shows some promise so I’m really hoping this goes well

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