And It's About Time There Was Some Support For Cushing's!
I started having terrible headaches in the mid 90’s. By 1998, they got so bad that I was diagnosed with chronic headache syndrome. I was prescribed different meds for the headache’s as well as anti-depressants. Over the following 4-5 years, I had periods that the headaches and other pains were worse then others. During this time, my depression would become so bad that I barely made it to work. My weight would sky rocket. After a few months, I would magically start feeling better and most of the weight would come off.
1n 2002, I was put on steroids to get rid of a sinus infection. I became so depressed that I would get physically ill just thinking about going to work. I knew the steroids were part of it, but I also knew that my boss was a big part. I quit my job and took about 6 months to get back to somewhat normal. I started at a new job and was very happy. After a few months, the cycle happened again.
A year later, my thyroid was tested and both my TSH and T4 came back low. I researched this and it didn’t make sense. After being dismissed by an endo as crazy, I talked to my family doc (who did the testing in the first place) and we decided to check for a pituitary tumor, even though he didn’t think it was there. Low and behold, there was a 5mm tumor. I went to a few more endo’s who also said that there was nothing wrong with me.
I saw Dr. Friedman in April, 2004. He was pretty sure we were dealing with Cushing’s disease. I then began seeing Dr. Ludlam when I heard that he does a more extensive testing (and he takes my insurance). I have tested positive on several tests for Cushing’s and Addison’s, but have not had a positive UFC or Dex suppression test. Dr. Ludlam can’t make a formal diagnosis until he has more positives.
I have been denied Social Security twice and hired an attorney to take it to court. Here in Texas, the courts are running a year-and-a-half behind. After the last 3 ½ years, I am hoping things will get bad enough this year to finally have surgery.
Update - I was approved for Social Security in September of 06. Also received Medicare. It was a Godsend.
I have finally been diagnosed!!!
Surgery is on April 24th, 2007 at Swedish Medical Center.
I am 5 days post-op and feeling great. I might have DI, but will check tomorrow. I thought this would be much worse then it has been. I feel like I am on the tail end of a cold and the worse is not being able to blow my nose. Otherwise, I am looking forward to starting the next part of the journey, recovery! They had to remove a third to a half of the pituitary gland. We don't know if they got all of the tumor or if I will get to remission without another surgery, but I am feeling very optimistic right now. Happy days are coming!
Four weeks post-op and doing great. Lost 2 pounds on JC! Keep up with me on the boards or my blog at www.goodfriend.wordpress.com