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I've been ill for so many years and went down the rabbit hole of every specialist there is to see. This is my 3rd round out of 13 years of seeing an endocrinologist and next week I have the ACTH stim test...
Not sure how active this forum is but I'll at least get this off my chest and it will be maybe helpful to someone else.
I've had symptoms of autoimmune and autoinflammatory disease but it's never gotten a definite diagnosed name, so those symptoms are fevers, joint pain, rashes.
I've had chronic fatigue for 13 years and has gotten progressively worse.
I have papilledema (swollen optic nerves, possible excess spinal fluid)
I have absolutely no appetite unless its later in the day after I nap and it lasts 30 minutes. But I've gained 30 in 6 years and I eat less than a toddler. I'm only 130 lbs so I'm not overweight but all my weight is my abdomen I look 5 months pregnant actually.
The real clue has been my rheumatologist was trying to see if my health would improve on prednisone so......I was on 20mg for 3 months and I felt GREAT! like a teenager again I'm 42. It was a miracle, it took about a week for me to feel the effects but when I did it was amazing but towards the end of 3 months I had alot of pressure building in my head and had to taper and I've been off of it 5 months and I'm sick as ever. So my rheumatologist moved away and I was referred back to a endocrine doc and he suggested adrenal insufficiency due to my improved health from the prednisone and my symptoms of course. I've had cortisol checked in the past and and it was elevated before but my 24hr urine was normal back then, couldn't find the exact #. I literally feel like I'm terminally ill I've been living off of my willpower for so long that it's no longer enough, my energy is -0. I've thought plenty of times to just take these prednisone I have, but I don't want to cause myself more damage. So that's my story and next week should be life changing wish me luck and to be continued...
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