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28
May
2010
JoJo, undiagnosed bio
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My Name is Joanne. I am 31yrs old.

When i was 13 i got mono so bad i had to have my tonsils taken out. I have had my titers for Eppstein Barr Virus / CFS tested & when i am stressed they  are high.

At 17 I found out I was born with a kidney defect & had pyloplasty surgery to have part of my right kidney removed. I have chronic hydronephrosis which is water on the kidney.

At 25 or 26 i was taking Yaz birthcontrol & started having problems with my menses : coming too early, staying later, breakthrough bleeding. I'm a medical assistant & was working for a gyno but went to one i was refferred to. At first i had all kinds of tests, sono's mri's ct's, endometrial biopsies. I was mis- diagnosed with adenomyosis. I  was taking 4 pills of a different birth control for a month to stop the bleeding that had become constant to the point i was very anemic. It didn't help, so the dr. did a d & c & started giving me depo provera shots. I had gained about 80 lbs.

Finally my kidney dr. did a number of tests & it showed a possible cancer called a leiomysarcoma. So he sent me to an oncologist & he said he was scheduling me for surgery the next day b/c the mass was growing & interfering with my kidney functions, on top of almost needing a blood transfusion & possibly having cancer.

So at 27 on 8/18/06 i went for surgery to remove the mass & woke up to find out that he had to do a HYSTERECTOMY. That devestated me. Ever since then i've had problems with my weight.

In 2007 I started working for a derm & she was also doing BHRT & FOOD ALLERGY testing, which i had done. My hormones were off, adrenals & cortisol etc. she gave me some adrenal support herbs but i didnt feel a difference. And my food allergy testing came back with so many allergies to good food that i thought was healthy, like tomatoes, chicken, tuna, peaches..i could go on & on. I was on Weight Watchers & it helped for a while...i lost 27lbs.

But 4/09 my new husband's company moved us out of state....and everything went haywire. I've gained over 30lbs....despite dieting, trying diet meds, low carbs, excersing even though im so fatigued It's all I can do to take a shower or do my hair. I read this page and so many symptoms i have are similiar : i'm extremely fatigued, but i push myself to go workout hoping it will give me more energy. Then after a month of exercising 5 days a week for 45-60 min & eating healthy i haven't lost a pound...i gain weight, or i lose 3 then gain 5??

I get frustrated & stop exercising.......i dont get it. I also suffer from anxiety for which i take medication. I'm very easily aggitated for no reason, i either cant sleep or sleep way too much. I fall asleep in my car at lunch. I feel i could sleep for a week & its never enough. I have acne, I'm always cold, but i sweat in my sleep sometimes. I just dont know what to do anymore, my husband doesn't understand, he thinks if i change my mindset it'll get better. I dont know if im depressed b/c we moved & i miss my family, or if its my eppstein barr, or my hormones from my hyst. or kidneys, or just plain stress.

My primary doctor had mentioned cushings b/c of the consistent steady weight gain / fatigue. But he did my labs thinking it could be my thyroid or sugar problems but all my labs came back normal. I also wake up around the same time in the middle of the night to pee, and am constantly constipated regardless of what i try, super colon cleanse, dulcolax, miralax..nothing works. And sometimes i have tachycardia (rapid heartbeat ) I dont have the moon face or the hump others described. But i do know this doesnt feel normal....i feel like i dont know what normal is. But im tired of being tired. I have to push myself everyday...And i cry because ive had so many medical misfortunes in the past, i just get scared.

I dont have ins, so i cant afford endo's & gastro's & all the testing that goes along with this. I thought writing would help and if anyone has encouraging words or answers feel free to email me. I wish everyone well, i know it feels so bad to feel this way everyday i wouldnt wish it on anyone.

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Steven, Corcept

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