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Nov 22, 2018 · Undiagnosed and don’t know where to go next in Autoimmune Diseases

I have been reading many of the posts and feel able today to post my story. Before July of 2017, I was very active even doing Zumba twice a week and caring for elderly mom. I have an an undiagnosed auto immune disease which began July 2017. Symptoms are so plentiful and diverse that I have had many doctors tell me I am a mystery. Not something any of us want to hear. I have been in the hospital 5 different times including the Mayo Clinic Minnesota since last year – all for different problems. I spent 12 days at Mayo paying out of pocket with no diagnosis.This also does not include ER visits. No one can diagnose my illness.
Almost all my symptoms are “quiet “ at this time but some of them were in no particular order of occurrence:

Chest pain soreness along the bra line
Soreness in rib area/lung area (still current)
Difficulty breathing (this came from fluid in both lungs)
SVT’s
Extreme fatigue
Pain in calves/thighs
Have Graves’ disease since 18 with just maintenance (after August disease onset T3 T4 not normal)
Extreme inflammation through out entire body causing 2 times of draining fluid from both lungs
Fluid around my heart which was drained
Fevers
Total kidney failure (dialysis 4 months)
Swelling in lower stomach below belly button after eating
Interitis which required admission to hospital
Biopsy of kidneys revealed Minimal Change Disease (nephrologist said failure would not be caused by this)

I have been tested for everything- lupus (multiple times),RA, cancer, tumors, multiple MRI, PT, sonograms, xrays (I’m surprised I don’t glow in the dark). I have 2 three ring binders with hospital tests, information and discs of MRI’s, etc. Rheumatologist tested me for Mediterranean Fever but it was inconclusive.
I have been on plaquinil, prednisone all the way from 60 mg daily now currently taking 5 mg. Took as much as 1,000 mg twice intravenous during kidney episode. Prednisone is a savior and the devil. Took metropolol for my heart which has since cleared up. Colchicine which I am currently taking for the inflammation “seems” to be helping. Inflammation markers which I ask to be checked monthly are still elevated. Inflammation goes up and I get sick. I am also taking CBD oil. I have had anxiety my whole life and extreme stress in my recent life and the oil has been a godsend. My husband says I act like a normal person now. I take that as a compliment because I do feel much calmer.

I’m still trying to get my thyroid in line and get my stamina and strength back. We are considering the NIH for help in diagnosing this illness I have.
I’m sure I’m leaving something out. It has been a long road with no end in sight. I’m trying to listen to my body and take it easy.