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Diagnosis

Still Negative

  • By janlorraine

    Three and a half years ago after feeling so very tired and achy for months and months I woke up at 4:30 a.m. in such agony that I woke my husband saying, “Please help me.” I couldn’t move without screaming. He put me in a hot bath and I began to feel that I could move a little. Soon I was diagnosed with Polymyalgia Rheumatica even though I had a normal sed rate. I did show an elevated C reactive factor and after a day or so of 15 mgs. of predisone, I began to feel better though still in pain. A few months later my fingers and knuckles swelled and I was checked for RA, but all my blood work was normal. I took prednisone for three years reducing my dosage as much as possible and finally stopped seven months ago; I hated it so much. Since then my blood tests have all been normal even though my symptoms have worsened so that I now hurt in every joint in my body especially my wrists, fingers, knees and neck. My voice is continually hoarse and my throat is sore. I recently went to a neurologist for a nerve conduction study and EMG and was negative for carpal tunnel. I feel as though I am coming down with a virus and if I didn’t have pain medication I think I would be suicidal. A blood test last week again was negative for everything except elevated liver enzymes (AST 60, ALT 69). What could that mean, I wonder? I think I have seronegative RA, but my doctor says no. He wants to see a positive rheumatoid factor. I tell myself to be patient that whatever is wrong with me will become manifest in time. And no one can tell me that I am not sick.
    janlorraine

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  • By mp44sturm

    I am sad to hear you are in a lot of pain. 🙁
    I understand that you can have a diagnosis of RA even though you have a negative rheumatoid factor.

    I would also seriously consider changing primary care doctors.

    See if you can get blood drawn for an anti-CCP test. It is real specific for RA. However, be aware that even if you have RA, it isn’t always positive.

    You can read more about CCP if you go to the Mayo Clinic website and type in the search box “ccp arthritis”.

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