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HELP! please read all of this. In desperate need of advice for lupus.

Posted , 3 users are following.

Brittcrisp
Brittcrisp

This past summer was the worst summer of my entire 23 years of life. I have always had anxiety and depression but i am not convinced it is the cause of what happened. Its almost as if my life changed OVER NIGHT. I was perfectly fine then all of a sudden felt like i was coming down with a fever but never actually had a temperature...next was the stomach aches. Thought it was a stomach virus because i had been going number 2 alot..next was nausia to the point where i couldnt eat and i lost 20 pounds in a month bc i couldnt eat. I felt as if i had a flu. I was weak to the point where walking down the block was difficult. Couldnt eat. My whole body felt like i had a temperature but never once had one. My skin felt like it was burning. My head throbbing. My mouth dry and i had tongue sores. This began in may and ended early august. In that time period i had 13 different kinds of blood work from every type of doctor. Colonoscopy and endoscopy. Cat scann on my head. Sonogram on my abdomin and pelvis. Sono on heart. Sono on vaginal area. Ekg. Urine and stool samples. You name the test i had it done. I felt like my body was shutting down. Went to the er 3 times they did masive blood work and still NOTHING. Not one test came back abnormal. I was healthy on paper and felt like a dying 90 year old women in real life. This might sound insane but i know my body and i know something is wrong. Doctors told me it was all anxiety. Im not buying it. I have had blood work for lupus twice and nothing came back. And just like this came over night, it went away over night. Just like that i was back to normal. Its november now and im still so depressed as to why i had no answers and scared it can happen all over again. I still get weird things here and there like itchy all over my body with no rash. Random unexplainable things. I am convinced i have lupus but doctors say otherwise. I cant live like this knowing at any second whatever happen to me this summer can happen all over agaon. I need help or advice. If anyone has anything they can say or any advice as to what my next move should be i would appriciate it. I dont know how much more i can take.

0 likes, 3 replies

3 Replies

  • jujubeee
    jujubeee Brittcrisp

    Posted

    If you get a rash, get to a dermatologist and have a biopsy done.  Keep asking for an ANA PANEL every six months.  See a rheumatologist who might treat you based on your symptoms.  As I'm sure you know the 4/11 symptom dx by the ACR- here's a link to it jic - 

    The “Eleven Criteria”

    Malar rash: butterfly-shaped rash across cheeks and nose

    Discoid (skin) rash: raised red patches

    Photosensitivity: skin rash as result of unusual reaction to sunlight

    Mouth or nose ulcers: usually painless

    Arthritis (nonerosive) in two or more joints, along with tenderness, swelling, or effusion. With nonerosive arthritis, the bones around joints don’t get destroyed.

    Cardio-pulmonary involvement: inflammation of the lining around the heart (pericarditis) and/or lungs (pleuritis)

    Neurologic disorder: seizures and/or psychosis

    Renal (kidney) disorder: excessive protein in the urine, or cellular casts in the urine

    Hematologic (blood) disorder: hemolytic anemia, low white blood cell count, or low platelet count

    Immunologic disorder: antibodies to double stranded DNA, antibodies to Sm, or antibodies to cardiolipin

    Antinuclear antibodies (ANA): a positive test in the absence of drugs known to induce it. A special note on the ANA test

    And don't give up!  Get a second opinion from a rheumatologist.  Some go for sero-negative lupus and some do not.  What about Fibro?  

    Keep a diary of your symptoms- also- did you have an elevated sed rate (ESR) ?  Have you seen a cardiologist (just to be sure your heart is ok) Did anyone check your complement levels?  Any elevated wbc's?  Have you had kidney tests done?

    Another thing..make sure your docs give you the ANA PANEL and not just the ANA Titer.  I know lupus patients (like myself) who get a negative on the titer but super high autoantibody counts on the panel.

    Good luck and hang in there.  Don't give up!

  • margaret22116
    margaret22116 Brittcrisp

    Posted

    hi, if you don't mind can I ask why a 'sono on vaginal area'?

    I have Behcet's. Very similar to Lupus. Your symptoms are like mine. Part of Behcet's specifically is the possibility of ulceration in the genital area. I don't get it often but have had it. My symptoms are much more neuro than anything else. 

    If you are still having issues you need to be referred onto a specialist who can diagnose these disorders. I would ask for a referral to a rheumatologist or an immunologist. Are you based in the UK? My blood works are so unremarkable usually. Maybe just slightly raised CRP and ESR. This is the case with many of us. Symptoms are so like Lupus I often think I have that but they say Behcet's so I guess they know. x

    • Brittcrisp
      Brittcrisp margaret22116

      Posted

      Im in the us. I got the sono on the genutal area because i was peeing extemely frequently while i wasnt feeling well. I didnt have ulcers down there. They checked my bladder cervix and ovaries. Urine samples too and allll checke out. None of my blood work has everrrr came back elevated or abnormal. Always perfect. I am litterally a mystery to doctors. I am feeling better since late august but if this happens again i will deff go to a new Rheumatologist. That you for your help
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