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Pet_Semetary's Post

Pet_Semetary

1y ago

Undiagnosed and Frustrated: Seeking Answers for My Symptoms

I'm currently undiagnosed, and I just had a doctor's appointment trying to get a diagnosis (my doctor and I suspect I have eds and pots) I just went to see another doctor who said I probably don't have eds because I've never sprained anything. I have doubts that's correct, I didn't think that was a diagnostic criteria? I mean I know it's a common symptom but I didn't think you would have to have had sprains before. I'm not sure how to feel about it, I mean she didn't seem to know a lot about eds (mostly just the textbook definition type thing) and she coukdnt even pronounse ehlers danlos. she wouldnt even try. so idk if I should trust that or get a second opinion? I'm also getting tested for other things too just in case, but yeah..

Your answer

mthebrave

1y ago

If in doubt always seek second opinion! And check the NICE guidance and protocols if you're in the UK. Good luck 😊

Flightlessbird

1y ago

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.

mthebrave

1y ago

I was thinking of asking my PT or Rheumatologist about hEDS/EDS as my hospital PT said I'm hypermobile and that might be contributing to further pain. Are there any other specialists who might be best informed?

Flightlessbird

1y ago

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.

Pet_Semetary

1y ago

that's what I was thinking too. The doctor I went to wasn't a specialist, just a np in a rheumatology department so I'm going to try going to a specialist and getting a second opinion:)

KaitS

1y ago

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!🤍🤍

Pet_Semetary

1y ago

thank you! Honestly I needed the validation lol:)

Alfubet

1y ago

Always get a second opinion. I saw multiple doctors and had to prove my case multiple times before finally getting my diagnosis.

Neuco

1y ago

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

Pet_Semetary

1y ago

I honestly don't know, I relate to a lot of the symptoms of heds so probably that but I kinda want to get tested for the others too just to be safe

thestinkmaster

1y ago

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

Pet_Semetary

1y ago

yeah I think I'm definitely gonna get a second opinion

BingoosLover

1y ago

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!

Pet_Semetary

1y ago

yeah that's what I was thinking:)

The content in this post is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition.

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