Discussions By Condition: I cannot get a diagnosis.

I have tons of symptoms that are similar to autoimmune diseases, yet I can't get a diagnosis. Ideas?

Posted In: I cannot get a diagnosis. 3 Replies
  • Posted By: Anonymous
  • June 7, 2015
  • 07:55 AM

When I was 11 years old, my hands started changing color from red to blue and back, and they had growths on them. I also discovered that I was unable to straighten my fingers and had very limited movement in my hand. I was diagnosed with Raynaud's and lupus pernio (but not lupus) and sent on my way. Over time, I developed severe fatigue, dizziness, and joint pain, especially in my fingers. I had multiple blood tests done, and all of them were negative. The raynaud's and pernio were still acting up at this point. When I turned 15, I suddenly got eczema, which I had never had before. I know this is normal, but it was so severe that it covered me from head to toe and huge parts of my skin were peeling off. It got this bad in a matter of weeks. I was asked many times if I had been a burn victim. I felt like I had the flu and my joints ached. I eventually was unable to go to school. I was put on prednizone (sp?) and was given many steroid shots, which helped, but I still have to put steroids on 3x a day. I later developed severe eye infections (it was swollen shut) for no apparent reason This happened more than once. My joints (and bones, when i apply the slightest pressure) still hurt, I am still tired, and now I develop red pin ****k rashes that look like bug bites. Also, my hands still don't bend correctly and I get dizzy and have what feels like panic attacks frequently. Sometimes, if I am standing, these will cause me to shake and then pass out, However, after all of this, and seemingly every blood test on the planet, I am still unable to receive a diagnosis. It is frustrating because I still have every symptom on and off and I never know when another will emerge. Any ideas? Has anyone else experienced this?

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3 Replies:

  • Try typing up all symptoms and look under autoimmune conditions online on rare diseases. Maybe genetic disorders. When seeing doctor, concentrate on 1 thing at a time. Do your research and don't stop until you get answers. Look up arthritic psoriasis. Best of luck.
    Anonymous 1 Replies Flag this Response
  • find a mast cell specialist, get a bone marrow biopsy
    Anonymous 1 Replies Flag this Response
  • Dear Poster, Hello. There are quite a few pieces of information missing from your complaint narrative. Here's what I'd love to know : (1) What is your age ? (2) Are you male or female ? (3) Do you drink ? (4) Do you have a non-prescription drug history or addiction history ? (5) What does your diet look like ? (6) do you have food allergies ? Do you suspect that you have food allergies ? (7) Do you live with another person ? (8)Are you sexually intimate with that person ? (9) Do you have trouble swallowing ? (10) Do you have ANY chronic problems with your food, or G-I tract, such as gastric reflux ? Constipation ? Irritable Bowel Syndrome ? (11) Do you have chronic dry skin ? Acutely dry skin ? Do you have a lot of exfoliation, such as dandruff, or pseudo-dandruff ? (12) What kind of work ? Thanks!!!
    Anonymous 1 Replies
    • August 27, 2015
    • 09:09 AM
    • 0
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