Stories
Privacy
Download
See Alike in...
Alike App
Browser
454d
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..
4
14
Share
Temporomandibular joint disorders
Postural Orthostatic Tachycardia Syndrome (POTS)
Chronic Memory Loss
Ehlers-Danlos Syndrome (EDS)
advertisement
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!
6
453d
If in doubt always seek second opinion! And check the NICE guidance and protocols if you're in the UK. Good luck đ
0
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.
@Flightlessbird 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?
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.
2
@Flightlessbird 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:)
1
go with your gut girl, i havenât 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 canât get any doctors to give me the time of day to listen to what i have to say. it doesnât matter if you donât have this or that for a condition for example they always say that if you donât faint you donât 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. youâve got this!đ¤đ¤
@KaitS thank you! Honestly I needed the validation lol:)
Always get a second opinion. I saw multiple doctors and had to prove my case multiple times before finally getting my diagnosis.
I would get a second opinion. Are you looking at hEDS or another type?
@Neuco 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
definitely get a second opinion. possibly ask if the clinic has EDS specialists.
@thestinkmaster yeah I think I'm definitely gonna get a second opinion
@BingoosLover yeah that's what I was thinking:)
â 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
Want to chat or share? Download the Alike app now and get complete access to Alike.health's unique features.
Instantly get answers to medical questions with our AI, built from the collective wisdom of our community facing similar experiences
Write your question here...
Download Alike for the full experience
Copy Link
Copied
Discover your Alikeness⢠with people who are on the same journey, gain wisdom and get emotional relief in a secure & anonymous space.
4.7 Ratings
Scan code or click below download the app
Bupropion
night sweats
paranoid
Valium
sertraline
palpitations
Anxiety (Including GAD)
Depression
Alike health
Instantly get answers to medical questions with our AI, built from the collective wisdom of our community facing similar experiences
Related Questions