Please help, at wits end

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I started losing lots of blood two years ago through urine. The doctors have given me iron twice in 18 months to restore my blood levels. Just recently 5 months, malaise, hands, feet wrist, shoulders hurt. Toes and fingers go numb and hurt. Lungs become labored. Pin head rash on my chest and stomach. I've been to 10 doctors. One urologist says auto immune, UC Davis urologist says vasculitis, a rheumatologist is throwing his hand up in the air telling me to go back to my G.P. I've been waiting 7 months to see a UC Davis Rheumatologist. RBC, HGB, HCT, MCV, MCH, Platelets, Lymphocyte %, Ferritin, Iron all low. Anisocytosis, Ovalocytes, Spherocytes abnormal. Ana positive, but I'm told low. CH50 is high. Lupus anticoag low. Cardiolipin antibody IGM high. ENA SSA ro antibody high. All of this but it seems like its going into remission. I haven't been able to work for 6 months and may now be loosing my job. Does this sound familiar to anybody, Please help, because the way these doctors are acting I'm starting to feel like a medical freak, no a broke unemployed medical freak.

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    Brian, I am so sorry to hear you are going through this. It took me 4 months to get properly diagnosed. I would  hope you have been able to find an Integrative Doctor to see- and have blood work done to show sed rate and C-reactive protein levels. Has anyone suggested a cat scan of abdomen? The loss of blood is startling and having difficulty breathing is another sign of vasculitis.

    If you have vasculitis you need to be treated- if it is large vessel like mine- GCA- you could be in danger of having a stroke or going blind- If the urologist suspects vasculitis somebody should be acting on that and not making you wait.This is just ridiculous.

    You could also go to the ophthalmologist and they would be able to also diagnose vasculitis.

    Please look at your labs and see if your Alkaline Phoshotase is elevated- that was a marker for my doctor.

    Don't give up and keep looking for the right doctors.

     

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    • Posted

      Linda, thank you so much for your response. The ENA SSA RO and the Anti Body Igm is high. The CBC is constantly out of whack. I live in a rural area and bless there hearts, the doctors are stumped. They think Lupus, connective tissue, vasculitis, but are not sure enough to treat. We don't have a rheumatologist in the area. Fortunately I have an appointment at U.C Davis with a rheumatologist in 3 weeks. It gets tough waiting, in fact I have now lost my job due to the delay, but I'm starting to see that its an all to common scenario. Thanks again, your response means so much.  

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