And It's About Time There Was Some Support For Cushing's!
I have not been diagnosed as of yet. I believe that I have had Cushings since I was in my early teens.
I have twin sisters that are 6 years older than I am and one has been diagnosed with a pituitary tumor and had the tumor removed February and then again in September of '06. It was so large they missed half the first time. She woke up in January 2005 with stroke like symptoms and the MRI showed the tumor. She had a MRI the year before for a bad headache and the tumor was missed by the radiologist.
I have been told for 25 years that I have PCOS, but never found cyst or high testerone levels. At 19 I went to a endo and as soon as he walked in the door said to me, you have cushings. But low and behold the test all came back normal and was not told that it could cycle.
I went to surg tech school at 27 and daily had doctors ask me if I had been tested for cushing. When I said yes and that it was normal nothing else was said.
To the present! In November, I had a day that my BP jumped sky high after being normal and had tingling in arms and in buffalo hump (which I have always had). I went to the emergency room thinking that I was have a stroke. I was sent to the endo which diagnosed sister, but was told there is no way that two sister would have this disease. I have had high cortisol levels come back from saliva test and am getting ready to do dex test.
The realy problem is that I have had a pituitary MRI and abdominal CAT and they have not found tumor. They did find a brain tumor and hemagioma but was told by neuro they are nothing to worry about.
The other twin then went to ER on New Years Eve with stroke like symptoms and did a MRI and found Pituitary tumor and are checking cortisol levels.
I have buffalo hump. weight, High BP, High Sugar, Large stomach and back., very thin legs and arms. flushing, purple stretch marks, skin problems (bad psoriasis), irregular periods, excess hair, loss of high on head, heart palpatation, muscle spasms, joint pain, fuzzy memory, sleep disturbance, wake up with convulsing, fat pad (last 3 weeks), immune problems.
What I don't understand is if I have had this for years, why are most of these problems just now showing up. I would take my life by before November and be happy with what I was. I have felt like a freak for all of my life and would like to have an answer, why?