Lupus???

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Sorry long post here. Need some help. Going back about 4 years ago in summer I had lymph node enlarge behind right ear out of the blue. I was tested for lots of things all negative. A month later my left foot swelled really really bad. I had numerous ultrasounds. Cat scans and blood tests. All negative no one knew what it was. My ANA was slightly off other than that everything normal. I also had with it fatigue, malaise I just felt like crap. I was foggy brained and everything hurt. I finally had a pet scan because they wanted to see what was going on negative. All my ultrasounds did show enlarge groin lymph nodes but nothing else and they weren't suspicious looking just enlarged. Over the years I always felt something not right. I am always tired. Joints hurt muscles hurt etc. I feel "swollen" a lot. I feel this way inside and out if that makes sense.

Fast forward to this year. I also have these weird sensations inside. I almost feel super sensitive. I have been having this weird felling of stomach growling on left side in fall. Then in December I had what was labeled as bronchitis did not get better with antibiotics then they said it tuned into pneumonia which is because my left lung only was wheezing and congested. I really sounded bad on the left. Then I developed a UTI on another antibiotic. I was also on predinisone twice because still not better. I then developed this rage of a horrible facial rash and flushing. Which my dr swore was the butterfly rash. Along with it I had very high heart rate and blood pressure. Anxiety. Difficulty swallowing no appetite. Brain fog. Felt dizzy out of it. Very weird sensations. Very cold couldn't get warm then hot flashes at night. I had a time I had brining all down left side even went to the er. I had this rash on my neck with hives to. I was tested for all sorts of tumors. Had cat scans. Echocardiogram. All negative. My Ana was positive so I had double stranded DNA drawn and that I'm told was negative. I also had tingly hands feet and lips. Burning in throats and nose. Weird feeling of cool sensations like cold water being poured down back. Lots of pain. Lots of pain in back and neck. Headaches a lot. Dry eyes.palpitations My eyes also look puffy. Then things settled on their own. My lung got better with singulair but I stopped it cause I thought maybe it was causing my anxiety. I also feel I don't tolerate the humid weather well at all. So I had been doing ok. I really don't have same complaint twice in a row. Things change the pain changes. The joint pain changes. But I never feel normal. Now my lung is wheezy again and I have a cough at times. My throats burns and I wasn't sure if I was just having allergies so I am trying meds but not really helping. I feel burning skin and burning inside sometimes I feel cool. My stomach has good days and bad days. My face still flushes and rashes and it's clearly the butterfly rash. The rheumatologist in my area is a jerk. My friend works for him and she showed him my face which he said was bad and needed attention. But since my DNA was negative he said nothing is wrong and I don't need to see her. So I made an appointment with one in a larger city near me but I couldn't get in until August 25. The doctors I did see for my UTI and lung all said I appear as though I'm having an autoimmune issue going on. Like that is how I present. I just want to be normal

Oh and on my scans my lung showed inflammation on the left lower which is where I complained of the wheezing and so on. Any help would be great.

One thing they also looked at was mast cell disease. But no one is really familiar with it and I had a lab frame for it but I was not having any issues at the time of the draw. I was hoping the rheumatologist in August would be helpful. But I'm looking for any suggestions. Thanks.

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  • Posted

    Hi lisa99975

    Have you had an ESR blood test and CRP test along with the ANA blood test....that will indicate inflammation if the levels are high:-

    ESR: Erythrocite Sedimentation Rate Blood Test

    CRP: C-Reactive Protein Blood Test

    ANA: Anti-Neuclear Antibody Blood Test...

    The dsDNA test is a definitive test for Lupus as yours was negative indicates you are not presenting with Lupus. The facial rash sounds like Roseca which presents as flushing in the face which affects the eyes also how long have you been on prednisone..as they can cause dry eyes and can affect your throat. Have you had your vit D and vit B12 tested ......low B12 causes fatique and liw Vit D can cause aching joints and bones......hope this helps..best wishes...

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    • Posted

      It's not Rosacea. Several looked at it and it's def not. Prednisone I was on for 1 1/2 weeks in January. Not on and haven't been since then. I did have a CRP it was negative. Vitamin levels both are normal. I also do have anemia. Not sure if I mentioned that.

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    • Posted

      Hi Lisa I would say you need ti see another specialist. Lupus does not always sow up in blood testing and your ana results certainly are indicative as are your symptoms. I would also get in touch with the Vasculitis Foundation in the USA and ask their advice on hiw to priceed naybe ask for a recommendation of good specialists close to you.
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    • Posted

      Hi lisa99975

      You should get your iron and ferretin levels brought up which i think is causing your fatique and some of your other symptoms such as headaches and dizziness..my very best wishes to you hoping you can get a firm diagnosis....

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