Discussions By Condition: I cannot get a diagnosis.

There is definitely something systemic going on here...

Posted In: I cannot get a diagnosis. 0 Replies
  • Posted By: Anonymous
  • September 7, 2016
  • 00:47 AM

Diagnosed with SLE based on clinic sx as well as labs; +ANA, +AntiChromatin Antibodies, elevated MPO, and PAnca, Anti-as DNA, Adolace and Beta-2 Glycoprotein I Ab, IgM. Vitamin D25 has remained below 25 (lowest level was 7), for over 4 years despite supplements and ample sun light exposure. Raynaud's phenomena, with many circulation problems. Multiple bilateral pulmonary nodules with growth of one in the left lobe from 4mm to 6mm. Legs itch so badly at times that I scratch until I bleed. Hives appear all over if the air surrounding me is too cool. Night sweats that are drenching and pain everywhere but mostly seems to stick around the flank area. Recent changes in vocal chords, can no longer hold a note and feels like I'm straining to speak. Throat is not sore. Fatigue that is relentless no matter how much I sleep or what stimulant I take. The list goes on and on. There has to be a missing link that the docs aren't seeing. Largely because they specialize in different areas and focus on that zone, and unfortunately don't communicate well with the other doctors consulting with the same patient.
I'm 35 and spend my days feeling like I am 80. I refuse to accept that this is my existence from here on out. My goal, pick everyone's brains and learn as much as I can to put the puzzle together and with any luck help someone else solve theirs as well.

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