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Do you have any similarities? Please Read!
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Do you have any similarities? Please Read!

I am a 21 year old female who has had similar health issues. It started @ the age of 7 for me. I had very bad leg and arm pains. The Drs told my parents it was growing pains. With in a year I started having severe stomach pain. They did several tests (endoscopeys, colonoscopeys, swallowing camera capsules, ect.) in which they concluded that I most likely had ulceritive collitus. They put me on medication and told me things should improve. When I was in 6th grade I had an episode of extremely painful abdomen pain and was placed into a children's hospital where they found my appendix was enlarged. They removed it and the pain subsided for about 2 weeks. After that the pain continued and I then received 4 lap surgeries with in 4 years checking for ovarian cysts, endometriosis, ect. They found nothing other than 2 liters of bloody fluid that showed only general inflammation. I was hospitalized several times and was given epidurals to treat the pain. Things settled down for about a year, until my stomach started looking extremely bloated. It continued to look as if I was 7 months pregnant with in weeks. I received an ultrasound which showed my liver was over 3x its normal size. They did an emergency liver biopsy and during this I hemorrhaged. I was air evacuated to UCLA and was there for 5weeks. Things were doing better for about a year other than my joint pain. I had 2 positive ANA tests but also has 2 neg ones. In 2008 I developed sever kidney pain. They thought it was stones or a kidney infection..they did a urinary scope and found almost hive/freckles in my bladder leading up into my kidney. My Dr had never seen them before so he sent them to mayo clinic to see if they could help with a diagnosis. They as well had no idea. I have been told it is a connective tissue disease but they arent sure which auto immune disease it is. In Oct of 2010 I was having speech impediments and some other neurological issues. They did a brain scan just to be cautious and found 2 lesions on my brain, but arent sure what they are from. They are leaning towards lupus because of the organs that have been attacked but If anyone has any advice or ideas to what this could be please let me know. I All I want to do is live my life as a normal 21 year old would. I am living in Utah and the snow seems to make the pain 10 x worse. I am currently trying to go to school for psychology but with all of these health problems it hasnt been easy. I'm willing to try anything.  If anyone has or knows someone with similarities i am begging for your input, advice, and support. I'm really struggling.
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hi,

first... i feel for you... many of us go through years of uncertainty, only to come out of it with more questions than answers... my first recommendation is keep a journal, b/c sometimes the symptoms don't paint an accurate picture unless viewed through time... you yourself must know your story, your doctors only can work with what details you have for them to help you problem solve from the clues you give them... be as honest & consistent in your observations as possible...

second recommendation is, going through this difficult time, it's best to always have something that will cheer your spirit... for a failing body that confuses you, it helps to have an anchor... your spirit can heal your body, and so never let your spirit suffer as collateral damage...

from your description, it seems to me you have a mixed presentation or constellations of possible diagnoses... lupus is often what they say when they can't figure out what's wrong with you... just b/c lupus can attack any and all tissue of the body, whereas most other auto-immune diseases are more or less limited to a particular type of tissue... difficulty with lupus is, everyone presents differently... it is an illness with a 1000 faces, they say...

i'd also recommend for doctors to test for anti-double stranded DNA, or anti ds-DNA... and complement levels, especially C3 and C4... please google them...

while lupus can strike any tissues, your other neuro sx seems to point to multiple sclerosis as well... has that been on radar...?

i've had lupus for 10+ years... the best thing i did for myself was/is... eat a better diet, some fruits, lots of vegetables... the more live foods, the better (if it's all right with your stomach)... keep a journal with reactions to foods... your body is talking to you, learn how to listen to it...

hope that helps...
thi




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I honestly can't thank you enough! I have had the double DNA strand and tested positive. I also have had 2 spinal taps checking for MS and both were neg. Thank you so much for all of your advice. That is all I could Ask for. I truly appreciate the response!
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TheLightSeeker
London, ON