Long Term Autoimmune Neutropenia

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Hello, so I am currently 28 years old and I am tired!! I have been dealing with different doctors and specialists for the past 12 years. when i was 16 i was diagnosed with lupus which at the time i basically had all the symptoms. It took the doctors a long time to come up with a diagnosis as I kept getting told that I had mononucleosis. My mom was not convinced so she took me to different doctors, all who said i had mono. It wasnt until a month after being very ill where i couldnt move any part of my body that I was seen by a rheumatologist who diagnosed me with Lupus. Back then taking prednisone was a life saver! but over the years as i got older i started to eat better and take care of myself so i was weaned off prednisone. they just kept me on hydroxycloroquine and immunosuppresants. In 2011 I drove up away to college which was 10 hours away. I ended up getting a blood clot from it, that is when they did testing and realized my WBC was 0.3. Immediately they took me off immunosupresants and the next day my WBC went up to 0.5... That was in 2011, since then i have seen a numerous amount of hematology/oncology doctors. My WBC has not gone up more than 1.0.. its usually between 0.5-0.7 which i have gotten used to being my normal. but the fatigue is to the point i cant even handle it. i could sleep for days and still be tired. Today I had my 6th Bone marrow biopsy?? I think because I may have lost count. the problem is that my doctors say that my count is low because of my " lupus" but i do not have any signs of lupus, in fact I havent for years! When they test for ANA i test negative, so if it was a flare up and my body was destroying my white blood cells wouldnt my ANA test come out positive at least once? I do not have any joint pain, i can be out under the sun without a problem, dont have any rashes (in my head i dont have lupus) All my blood work is off! here are some of the symptoms I have in case someone else has something like it? At this point no diagnosis feels worse than having a diagnosis. Even if its bad because i will at least know what must be done in order to get better. I am tired!

  • Extremely Low WBC : all time low was 0.2, highest was 1.2
  • Monycytes are always high
  • Low Hemoglobin: lowest that i can remember was in the 9's
  • High platelets: Just slightly above average
  • Fatigue, Headaches, Dizziness, memory problems
  • Chest pains
  • All bone marrow biopsies have been ok
  • Dont get sick often but when i do its bad

    All the above symptoms for the past 10 years.. I see new doctors, they get intrigued by my case and after they cant figure it out they point at lupus

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    Its important to take vitamins daily.

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