My name is Alicia, I live in Harriburg,PA. Starting from high school I struggled to understand feeling strange, bruising easily,and many other symptoms.
I broke my hip when I was 20 in 2003. Which the doctors could not explain. then in 2004 I had a lost a pregnancy. Not to mention the fact that I had went from 140 pounds to 215 ponds. I kept going to the doctors and getting no where. I would be in the ER constantly. One day after leaving my PCP I went to my mom and was crying very upset because the DR. had put my on blood pressure medication. And I was like at 22 there is no way I am taking this. MY mom noticed that my legs were turning bluish she took me to the hospital and they admitted me for my blood pressure alone. After being examined and bloodwork the er dr. agreed something else was going on. After 2 weeks of tests the MRI didn't lie. Also the 24-hour cortisol urine test. I had a pituitaty tumor. I had no idea what cushing's disease was and am still to this day having trouble understanding. I had the surgery where they went in from my upper lip and nose. I was doing good I lost about 75 pounds and was starting to feel normal. Then after only that brief 1 year back again came the weight,fatgue,high blood pressure,everything you name I am the classic case. This time the tumor was said to be inoperable because of its position on my pituitary gland. I had gamma knife radiation in 2008. I am having more trouble this time around. My cortisol level was normal last testing although I still weigh 218 pounds, my face is still the same and I sometimes have missed periods. My husband and I both want kids and I need to here something positve about having kids if you have cushing's disease. My next follow up isn't until April and I never really get for sure answers, just blanks like give it sometime gamma knife radiation can take up to 5 years until you know if it truely worked. I feel like I've lost all my friends. And sometimes I get really embarrased that I'm 26 and look totally different than others my age. I am currently not taking any medications except for high blood pressure and vitamin D. I took myself off all the anxiety and depression meds. I feel pretty good most of the time. I joined this site in hopes to have some one understand and talk to about this rare disease. If any one could tell me about the pregnancy factors please contact me. Thanks for reading my blog.