Discussions By Condition: I cannot get a diagnosis.

The doctor is refusing to give me a diagnosis - What do I do!?

Posted In: I cannot get a diagnosis. 2 Replies
  • Posted By: Nicole93
  • July 4, 2010
  • 08:39 PM

This goes on from a previous post I did about my symptoms. Someone said it could be EDS and I checked the symptoms and it was me all over. I was at the hospital for the usual check up after my kneecap managed to dislocate itself yet again and was diagnosed with severe joint laxity. They told me this could be due to EDS and told me to book an appointment with my GP to be tested for it, so I know it wasn't just my imagination running wild thinking I may have EDS as a doctor said it could be the cause of my problems without me even mentioning anything. So anyway, I went to the appointment at the doctors, they sent me for xrays (No idea why) and they showed absolutely nothing. So he sent me to the hospital to the joint specialists questioning about the test. As per usual they concentrated on ONLY my knees when, obviously, they are the least of the problem. The doctor that examined me told me again that I had joint laxity followed by 'There's nothing we can do for you. We're not going to test you for EDS either as even if you did have it there's nothing we can do about it so you're just going to have to just live with it'. Yes, that is a direct quote. He literally told me to 'just live to with it'. He didn't book me in for physio, didn't prescribe me any DECENT painkillers (not that ibuprofen or paracetamol rubbish). He did absolutely nothing. Are they actually allowed to just say that to me and discharge me? I don't know if I can apply for DLA either with just the diagnosis of 'joint laxity'. It affects my working, my joints dislocate after even working for 2 hours. I work once a week for 4 hours and I struggle with that and because I have flat feet (another symptom of EDS) I find it hard to stand up for that whole 4 hours, which I have to do because of the job. I literally last 1 hour before I'm almost doubled over in agony. I've no idea what to do anymore. I've been fighting for a diagnosis for 6 years now and the most theyve done in sent me for xrays of the same place and fobbed me off.
Please help me! What do I do anymore? :( I feel like just giving up. :(:confused::mad:

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  • We're not going to test you for EDS either as even if you did have it there's nothing we can do about it so you're just going to have to just live with it'. Yes, that is a direct quote. i suggest to see a different doctor or go to a different hospital next time you have issues. i've found that doctors will often not bother to test for things if they dont know what to do about them if it comes back postive. thou im on a disablity pension.. im currently paying out lots for private specialists as im so sick of the public health system in which bothers doing bascially nothing.
    taniaaust1 2267 Replies Flag this Response
  • i suggest to see a different doctor or go to a different hospital next time you have issues. i've found that doctors will often not bother to test for things if they dont know what to do about them if it comes back postive. thou im on a disablity pension.. im currently paying out lots for private specialists as im so sick of the public health system in which bothers doing bascially nothing.I've seen loads of different doctors, at least a different one each month. They've all just checked my knees, as they're the only dislocations on file because I can't be bothered to deal with the doctors when I do have a dislocation, sent me for an xray to tell me that there's nothing wrong with me and send me home. It was only until they started flexibility using that test (I got 8 out of 9, so i'd say it's pretty bad as a score of 4 indicates joint laxity) that they gave me a 'real' diagnosis... followed by telling me they weren't going to do anything then discharged me anyway. So I don't see what goods come out of that diagnosis? I've decided on literally demanding that test.
    Anonymous 42789 Replies Flag this Response
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