And It's About Time There Was Some Support For Cushing's!
I'd been getting sicker and sicker for years. Tired all of the time, very little short term memory, obese, constantly falling down and injuring myself, migraines you name it. I've had several doctors insult me, tell me nothing was wrong with me I was just fat and to deal with it. I was teaching water aerobics 3-4 times a week when one doctor told me I ate too much and exercised too little. By the time I was diagnosed with anything my active life style was gone due to pain and weakness. I was first diagnosed with Diabetes about a year and a half ago and sent to an Endocrinologist.
A little over a year later the Endo asked to see a picture of me before I began gaining weight. I showed her a picture and she decided to start running tests for Cushing's disease.
Last July the diagnosis was made and in August of this year (2003) I had surgery to remove the Pituitary tumor. I am still awaiting the follow up MRI with the Neurosurgeon to see how much is left and whether or not radiation treatment is needed.
Before the surgery I was told the tumor was so large and in the sinal cortex that they probably would not be able to get it all and that I would probably need radiation. I am glad I was finally diagnosed and treatment has begun, but I still have some really bad days and wonder if I will ever feel good again.
My joints and back still ache most of the time, I have unresolved kidney stones and foot and ankle swelling on a daily basis. At least my face is starting to look more normal and I have better color, my sugars are becoming controllable and my blood pressure is down.
I guess I am just counting my small blessing as they come and hoping for more.
I originally posted in 2003.
It is now 2007 and I am still around, but unfortunately far from cured. In 2004 the pituitary tumor returned only this time in an area considered to be inoperable. After a failed attempt at Gamma Knife (my symptoms are so severe they were unable to get my head flat in the MRI necessary to position the Gamma Knife equipment once they had the frame literally screwed on to my head) I had IMRT (Intermittent Modulated Radiation Therapy) in March/April of 2005.
A year later in March 2006 I finally saw some results - my ATCH and cortisol levels began dropping, and I started to feel a little better and able to do more week by week - that is until September 2006 - I started heading the other direction again, tests in October confirmed that my ATCH and Cortisol levels were again on the increse.
Right now I waiting for the physicians to decide what treatment is next - try Gamma again (I have lost some weight), repeat the IMRT or possibly remove my adrenal glands. I am not sure what to think or what to do next - all I know is I've had a small taste of what it is like to feel a little better and I want more.
I wish there was an easy cure for me, but it doesn't look too good right now. I think a lot has to do with the severity of my symptoms which is probably a result of being mis/undiagnosed for an estimated 24 years. I am sure that losing my mother/best friend in August of last year isn't helping my stress levels any either.
Any advice professional or personal appreciated. I am at witts end at this point. I have been on disability since Oct. 2004. Social Security kicked in in April 2005 and now I will be going on Medicare in March 2007 - I am only 43 years old - there has to be something they can do!
