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  • If not Lupus what then?

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    Old 02-11-2011, 10:26 AM   #1
    NJGirlatHeart's Avatar
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    If not Lupus what then?

    I was diagnosed with SLE 27 years ago. In the beginning it was very scary as I had major kidney involvement, joint pain, high sed rate, fever, dizziness- just every symptom you could possibly have.

    In the last 10 years I've had very little activity. But recently my stress level has gone crazy and in the last few months I have had major joint pain, rashes on my face and lower back pain. I had to leave my job and am now on Medicaid. The first primary care doc I was assigned really had no clue. He didn't do any lupus testing just general blood work. It did show I was anemic which he told me it was from the plaquenil I was taking.

    I can't find a Rheumatologist here that takes Medicaid and I don't have the money to pay out of pocket. So, I changed my primary care doc to an internist. I saw her this week and today was told that I do have lupus but my sed rate is normal and my compliments, C3 and C4 are normal. (I asked to have my labs sent to me as I'm not sure what they mean by normal. I was told that a sed rate higher than 5- 10 showed that something was wrong. I also know in the past, if the sed rate isn't done within a certain amount of time it could not be valid.)

    I've been in so much pain whereI can't sleep because every way I try to move hurts and muscle weekness as well as lower back pain. I went to the emergency room about 3 weeks ago and they said my sed rate was elevated and my potassium was so low that they made me take a supplement before leaving the ER. They also gave me intravenous pain meds and non steroid anti-inflamitory drugs. I felt better for a while but the joint pain is back and the swelling is also back but not as bad as it was before I went to the ER.

    The new doctor's office said I wasn't in a flare and that I didn't need to see a Rhematologist and to come back in 3 months.

    I also had thyroid cancer 20 years ago and have been on thyroid replacement since then.

    If this isn't lupus then what? My symptoms are real. I'm tired all the time and my hands are swollen that it hurts to even type this.

    I also tried to get an appointment with a Rheumatolgist here but the soonest I can see one who accepts Medicaid is October 2011.

    Any suggestions?

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    Old 02-12-2011, 04:45 AM   #2
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    Re: If not Lupus what then?

    NJGirlatHeart, I'm so sorry you're going thru this. You could look for local support groups, to ask for names of rheumatologists & for GP's who know lupus---who'd see you sooner than October. The support group wouldn't even have to be for lupus, really: any organization for rheumatological conditions might know something (like for RA, for example). Also, some hospitals have patient relations departments that might know something helpful. I hope others here chip in. Let us know what happens. Sending you my best wishes, Vee

    P.S. I checked posting rules & found "dot-gov" links are permitted, so here's link for locating Medicaid doctors. 1

    Last edited by VeeJ; 02-12-2011 at 05:38 AM. Reason: added PS

    Old 02-12-2011, 06:47 AM   #3
    crbcraver's Avatar
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    Re: If not Lupus what then?

    Just a may want to call and see if they have any kind of waiting list they could add your name to. A lot of offices have lists that they use to fill in appt cancellations. If someone cancels their appt, they would call you to see if your available to come in.

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