HELP me :'(

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I moved 3 years ago to South Carolina from Illinois and I kept my rheumatologist in Illinois because I have family there well he moved to another state where I know absolutely nobody and it would be a lot farther and I'm trying to find a Rheumatologist down here because I'm in a really bad flare now. I was diagnosed 10 maybe 11 years ago with lupus chronic fatigue and recently how for years ago with fibromyalgia I came up positive on my anh, biopsy and all the tests for lupus 10 years ago for 3 years now down here they want to reinvent the wheel and for some reason it came up negative but other tests were positive my hands are swelling I have sores on my face sores in my nose typical lupus flare but this one is just absolutely worse. I can't get any of them to listen they don't want to see the results from 7 years ago that everything was positive they wanna test now and I don't know why but its coming up negative information everythings positive but they said no I don't have lupus and took me off my Plaquenil and I was receiving a Kenalog shot every 3 months now they don't want to give anything and I am in so much pain they said I don't have lupus it's all in my head I can't take this anymore help me please

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4 Replies

  • Posted

    That's awful for you, don't know what to say that can help, only to keep going back to them, ring them every day to tell them your symtoms, maybe they will eventually they will listen, good luck.
  • Posted

    I also sympathise with you as it takes such a lot of time and effort to get diagnosed in the first place. It is possible that you can contact your old rheumatologist and ask that your records are forwarded to your new rheumatologist, or if he can send you a letter confirming what his diagnosis and test results were. I cannot imagine how difficult this must be. I hope you get to the bottom of this because stress will only worsen how you feel.
  • Posted

    This is awful. I can see why they want to repeat the tests - cos time has moved on and things may have changed - but you are clearly worse. And you are clearly unwell and they are doing nothing about it.

    I have American family so I know a little of the US system. I also understand HBOs can be awful.

    Can I suggest that you get hold of your old Rheumy and ask to have a brief discussion with him in Illinois? I don't know if you have to pay for this? However, they are not listening to you - and they might to him!

    Next I'd say to them that you will hold them legally responsponsible for any negative impact on your health by their lack of treatment and their ignoring of previous tests.

    You can't 'get over' lupus like the flu. You've got it or you have'nt. However, tests such as the ANA [anti nuclear antibody test] can vary at various times. So can the ESR (erythracyte sedimentation rate) - when you are inflamed it goes up - when symptoms well controlled it goes down

    Can you change your doctor? Sorry that's all I can suggest as this is a UK website and the US system is so different.

    All the best

  • Posted


    Have you been able to find a better rheumatologist? I live in Charlotte, NC and could reccomend one here, but I'm not sure how far down into SC you live.


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