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Immune Disorders Message Board


Immune Disorders Board Index


So I've been getting progressively more ill for over a year. I am constantly sick, but I have recurring episodes where I am completely unable to function and need help to perform everyday tasks.

My main symptoms are pain (pretty much every type there is...stabbing, throbbing, aching, gnawing, etc.), tingling and numbness in arms and legs off and on, fever that comes and goes and can get as high as 101. Several fainting episodes, collapses where I am too weak to sit up or stand...often for hours at a time, trouble urinating and I did have one accident recently. My arms and legs have both become very weak and I seem to have some muscle wasting now. I get so weak and painful I have a hard time breathing a lot of days. I also have multiple different types of rashes I get as well as chronic diarrhea. Oh and kidney stones

So far these are the tests we've done:
CK: low
ESR: slightly elevated
White blood cells: slightly low
ANA: Negative, but anti-histone positive three times now
Vitamin D: 18, but treated with prescription strength now
Urine: slightly elevated protein, passed kidney stones
brain MRI: normal
EKG: normal
Halt monitor: normal
Echo: Mitral valve prolapse, mild
abdominal CT (after kidney stones): swollen kidney, small nodule on lung, diverticulums, and elarged messenteric lymph nodes
EEG: still awaiting results
Chest x-ray: still awaiting results
blood cultures: still awaiting results

I've seen multiple doctors for this and in the last month have had three ER visits when I collapse or faint and cannot care for myself. This is getting incredibly frustrating. My doctor is now considering sleep studies, a spinal tap, and the test where they stick needles in my muscles because I have bad arm reflexes.

I'm only 23 and terrified. I am afraid we may never figure this out. This has become debilitating and may soon face unemployment.

Anyone else ever go through something like this? Is there any chance this will ever get figured out?

Thanks ahead of time for any help
Liz





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