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Diagnosis

If not RA, then what?

  • By mamadee

    I have a rheumo appt. on March 12. But what if they don’t think it’s RA or some other autoimmune thing? Then what? Can a rheumo help me with the pain in general?

    I don’t WANT to have a diagnosis like that, but at least then I’d know what I was dealing with, crazy as that sounds.

    I keep thinking maybe this is just a perfect storm of coincidental things going wrong the last few years. More acute in the last few months. Maybe I just happen to have Raynauds (diagnosed) toe hallux rigidus (diagnosed), and also hip bursitis, tennis elbow and bad knees and fingers and sciatica all at once?

    What if they can’t find anything? What do I do then? Does an rheum. do injections or anything for pain and a plan to get my life back?

    I am only 51, but I feel like my grandma. Is this just what it’s like to get older?

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  • By ktinflorida

    I know what you mean. The worst diagnosis you can get at this point is no diagnosis. The symptoms don’t go away because they can’t name it. The pain doesn’t go away. You start questioning yourself, your motivation, your sanity. My RA diagnosis was a relief. I know that sounds strange, but I finally knew what it was. Once you can name it, you can fight it. My family didn’t understand that. I think they thought I wanted to be sick. I don’t want to be sick, but I AM sick. The doctor didn’t have to agree for that to be a fact. It just made it harder when the doctor didn’t agree.

    Get a copy of your blood tests at every appointment – especially if they tell you nothing is wrong. Often doctors won’t make sero-negative diagnosis. That is how I got trapped in the no diagnosis quagmire.

    Yes, a Rheumatologist should help you unless they decide there is nothing wrong or they refer you out to a pain management clinic.

    Keep us posted on your progress. I hope you get some answers.

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  • By mamadee

    Thank you. I know the clinic I am going to does injections, etc. So I am hoping to get relief even if they can’t figure it out.

    Did you finally get a sero-negative diagnosis? What symptoms did you have?

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  • By mamadee

    Well, he did help in one way, but I’m no closer to knowing what is actually wrong. Unless the blood work comes back with an auto immune factor, and the doctor didn’t seem to think that would be the case.

    I did get a cortisone injection in my hip bursa and down my IT band, because he confirmed bursitis. And got an RX for acetaminaphin, and Meloxicam and Gabapentin, for the other joint pain, which is from…….??? That’s still the question.

    So I’m still back to “if not RA (or autoimmune in nature in general), then what?”

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