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Old 07-28-2011, 11:04 PM   #1
Junior Member
Join Date: Jul 2011
Location: Long Island, Ny
Posts: 23
LeaBeans HB User
Undiagnosed auto-immune

I've been to about a million different specialists, all trying to find out what's wrong with me. I've been sick for years now. Not just with constantly falling ill with some sort of cold or infection at least every couple of months (yes, even in the summer) But, the symptoms have been piling up for me as well. I've had tons of blood work done for different auto immune diseases but, nothing came up. I've had my SED rate checked which hasn't shown anything. The only thing that showed was when I was at my dermatologists office seeking help for the massive amount of hair I've lost in such a short amount of time. She took a full blood panel and found that my thyroid was off, I had a high level of DHEA levels (which seems to be the one consistent factor in all my blood work) and my ANA titer came back positive over 1:40 which isn't very high at all but, it was still showing that something is off. Before that I had been to a gastro (about a year prior) for all the stomach problems I was having. Those blood tests showed a positive for crohn's disease but, my endoscopy showed nothing nor did my colonoscopy. I've also been to a rheumatologist who found nothing, and to a neurologist who also, found nothing. I went to an endocrinologist who said my levels were all out of whack but, sort of dismissed me right away and said I had PCOS (polycystic ovaries) which, ok I get because I had a laparoscopy and D&C donein november for cysts and adhesions but, it still didn't equate all the other symptoms I've been experiencing. It's bringing me down so much that I can't just feel healthy like everyone else. I honestly don't know how I even get out of bed anymore. This sickness has literally been such a burden on my life in so many aspects that it's driving me insane. Why can't the doctors figure out what the hell is going on? Anyway, I was hoping someone ANYONE out there could let me know if these symptoms sound like anything or if they have ever dealt with a similar situation. Let me know please, any help is greatly appreciated. Here are the list of my symptoms (and no I'm not a hypochondriac, I really do feel this way every day. On good days only half of those symptoms)
Extreme fatigue
body aches
dizzyness and vertigo daily
weakness in body in arms and legs
faint feeling when standing up
numb fingers and toes that come and go without cause
vertigo/dizziness regular basis
headaches on regular basis
chronic infection in the throat and lungs
digestive problems including pains, aches, vomiting, diarrhea etc
weight loss, severe at one point
worsening hair loss over past four years
constant thirst
loss of appetite- consistent at times
feel feverish often
pain in back (kidney area) comes on suddenly and very severe, only lasts about a minute or two
aching hands (lock up)
aching knees and hips
running to the bathroom frequently
digestive system and bladder shut down post operative laparoscopy for two weeks
Muscle burning sensation from light activity
blue-ish color in hands and feet majority of the time
Hands and feet are always cold
Uneasy feeling in stomach when in direct sunlight for more than ten minutes (since I was younger)
Easily bruised on legs.Heart palpitations/heavy heartbeat.
hand tremors
joint pain

I've already been tested like I said for different auto immune diseases like Lupus and only had a positive ANA of 1:40 which, could be a false positive but, from what I read Lupus has alot of the symptoms that I have and is also very difficult to diagnose. I had a ct scan of the abdomen and pelvis recently as well, since the pelvic pain I was experiencing due to the cysts and adhesions, is now back and worse than ever. Anyway, sorry for the rant.

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