Help please!

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magenta
magenta Member Posts: 1,604
Hello,
My computer is 'allowing' me on tonight so I thought I would try and ask for your advice. Recently been to my rhuemy. Again, same old story-'don't know what's wrong with you'. Anti-ccp was negative so I don't have RA. They asked me if I had psoriasis and when I said no ( if I'd said yes, they would probably have diagnosed PA) they then mentioned inflammatory arthritis. They then said I probably had fibromyalgia. I've looked this up and I do have alot if not all the symptoms. They can't explain the inflammation I get in my joints-again, 'don't know why you get this' :shock: I go back in 6mths time with the aim to be discharged-this worries me. Should I not still be under the care of a rhuemy? Other thing-they can't/won't do anything with regards the oa in my jaw. They say it's too specialised a joint for them and it should be dealt with by a maxilliofacial surgeon. I attend a max-facial clinic for TMJ dysfunction but they too can't/won't deal with my oa. I'm scared that I'll just be told to go away-again!!! Any ideas would be much appreciated,
Magenta

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  • bertyboy
    bertyboy Member Posts: 1,860
    edited 30. Nov -1, 00:00
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    sorry magenta have no ideas , but i wish you well in your quest for answers , what i would probably do is go back and speak to gp take care glad comp is ok at min xxxxx
    I know i am a lady ,all life is a journey xx MAY xx
  • helpline_team
    helpline_team Posts: 3,574
    edited 30. Nov -1, 00:00
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    Hi Magenta
    Sorry you're stuck in this frustrating situation. People often get diagnosed with Fibromyalgia if their symptoms fit and there isn't another diagnosis. People do often get discharged back into the care of their GP but, if there is still some doubt and, as you say, they have no explanation for your joint pains, then do ask to be kept on the rheumy's list.
    I cannot understand why the maxillofacial doctor doesn't deal with the OA in your jaw. A jaw joint is a jaw joint whatever the underlying condition and that is his area of expertise.
    'Choice' is the buzzword in the NHS these days and if you are not happy with the care you are receiving then you can ask your GP to refer you for a second opinion. Plan how you would ask this so you come across as assertive and get what you need. We are quite good at this if you want to give us a call !
    Best wishes
    Val
  • magenta
    magenta Member Posts: 1,604
    edited 30. Nov -1, 00:00
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    Hi Magenta
    Sorry you're stuck in this frustrating situation. People often get diagnosed with Fibromyalgia if their symptoms fit and there isn't another diagnosis. People do often get discharged back into the care of their GP but, if there is still some doubt and, as you say, they have no explanation for your joint pains, then do ask to be kept on the rheumy's list.
    I cannot understand why the maxillofacial doctor doesn't deal with the OA in your jaw. A jaw joint is a jaw joint whatever the underlying condition and that is his area of expertise.
    'Choice' is the buzzword in the NHS these days and if you are not happy with the care you are receiving then you can ask your GP to refer you for a second opinion. Plan how you would ask this so you come across as assertive and get what you need. We are quite good at this if you want to give us a call !
    Best wishes
    Val

    Thanks Val,
    I may call. I feel that's all I do these days-ask for another opinion. No-one seems to know for definite what's wrong with me. I always feel frustrated and think everything they come up with is just a guess. Thanks for your support,
    Magenta