Misdiagnosis?

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mellivenelli
mellivenelli Member Posts: 38
edited 18. Mar 2014, 05:14 in Living with Arthritis archive
Hello everyone!

Just after some advice.

Went to my Rheumatology Nurse last week and after explaining how i was feeling she got really excited and got the Lead Consultant in to examine me. He got excited too (this unnerved me somewhat :? ).

I recently got diagnosed with Sero Negative Inflammatory Arthritis and Hypermobility Syndrome and they now think I've been misdiagnosed and I've got some rare connective tissue disease that they've only had one case of in 10 years. :cry:

I wouldn't mind but I told the original Consultant I saw the exact same symptoms I have but it appears that he wasn't listenening properly and he should've picked up on a few of the other symptoms I told him :roll: .

I then got ushered in to the nurses room where they took 7 blood bottle samples from me :shock:

They're sending me an urgent appointment to see the consultant in the post.

Don't know what to think.

Has this kind of thing happened to anyone else?

Thanks in advance

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  • Boomer13
    Boomer13 Member Posts: 1,931
    edited 30. Nov -1, 00:00
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    What did they say it was, your new diagnosis?
  • dreamdaisy
    dreamdaisy Member Posts: 31,520
    edited 30. Nov -1, 00:00
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    I wouldn't be thinking anything just yet, mellivenelli: diagnosing any form of inflammatory arthritis is a challenge (as many of us know) and, if the original chap missed something (due to rarity) then at least this is being picked up now. Consultants are only human and cannot be expected to remember everything even though they know a lot about a little. If you have been given a name for this condition then please google responsibly - why add to the fret factor? Please let us know how your next appointment goes. DD
    Have you got the despatches? No, I always walk like this. Eddie Braben
  • barbara12
    barbara12 Member Posts: 21,281
    edited 30. Nov -1, 00:00
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    Oh a mystery..did they not give you any idea has to what it is..hope you wont be any worse off if that is possible..good luck and let us know how you get on..
    Love
    Barbara
  • Boomer13
    Boomer13 Member Posts: 1,931
    edited 30. Nov -1, 00:00
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    Dear mellivenelli;

    I think what does happen frequently is that doctors don't look for rare conditions initially, even if symptoms are there. They look for the common things, until over time and with repeat visits something makes it obvious that the diagnosis needs to be changed.

    No need to worry, but it can be difficult waiting for test results. There is a strong possibility your blood tests will come back negative for whatever it is they are testing for. You might as well not worry until you know for sure :D
  • mellivenelli
    mellivenelli Member Posts: 38
    edited 30. Nov -1, 00:00
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    Thanks everyone!

    They haven't given me a name for it thank god or i'd be driving myself nuts with worry :lol: Whilst still in the room they were passing initials back nd forth so i have no clue.

    I did google my symptoms and a couple of things came up which were Mixed Connective Tissue Disease and Systemic Sclerosis. I then decided to step away from the laptop and leave it to the professionals :lol:

    Nothing I can do so I'm just going to wait and see what the bloods do or don't reveal.

    Oh the joys. Life is colourful :roll:
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