I am on my second go-round with Cushing's.
Was originally diagnosed in 2002 while serving full time in the Air National Guard and attending school full time. First symptoms started in the early 90's after returning from the Gulf War, symptoms similar to PTSD which at the time everyone denied having. Symptoms gradually incresed until my GP could no longer treat me, he wanted to refer me to an Endo. Instead I chose to turn to the VA for treatment. As part of their intake process you fill out the standard questionares and a detailed of every possible symptom that you are experiencing. They also ran every piece of normal bloodwork that you could imagine, which was very good in my case.
The first doctor that I saw was a shrink for sleeping pill for the insomnia. I wish I could remember his name, because he was really on the ball that day. He talked to me, looked at me, looked at my intake sheets and my lab work and within 15min was asking me if I had ever heard of Cushing's Disease. I named my first tumor Blanch in honor of Blanch Deveraux from "Golden Girls, cause like her I was one HOT mama. I have never looked outside the VA health care system since and don't see any reason to in the future. Unlike others who have the disease all my care has been managed in one medical system that is totally interconnected, which means that every doctor that I have seen in the last 11 years has had access to all my medical records going back to 1986.
Time from seeing first doctor to operating table was nine months. It's so easy for me sometimes to loose track of the fact that I was sick and complaining to my docs for eleven years, because the last part went so quickly compared to what others have gone thru. I loose sight of the fact that I was at deaths door when I turned to the VA, they told me I had 98% of the indicators in the PDR, and was at most a year away from a heart attack or a stroke. I was 37 at the time.
My surgery was performed in Ann Arbor Mi, with a surgeon from the UofM staff who is a pioneer in the field, I have to look at the records to remember his name as Cushing's keeps stealing it away from me. I was in remission for 4 wonderful, glorious years.
By 2007 when the symptoms started returning I had moved to the DC area and was under the care of all new doctors, none of which had ever seen a Cushie. An MRI and a round of labs later I was declared cured and referred to the GYN and weight management program to deal with my issues. With the help of my new GP, who believed me btw, we worked the system for the next 3 years. She routenly ran labs on me and once a year did a full medical workup, as new symptoms popped up she sent me to specialists, so that when the time came all my ducks would be in a row and we would not have to waste time getting me treated.
Finally in 2010 the migrains started and we could justify the MRI, two days later I got the call that a new tumor had grown. This one is named Sophia, because I was feeling more than a little crotchity with her. Diagnosis was May and surgery was Feb 2011.
I wish I could say that I'm done with Cushing's but it was determined before I even left ICU that there is a third tumor. Labs and MRI both tell that I am one unlucky woman. I have named this third one Rose, as I figure by the time this one is thru with me I'll be a ditz.
In addition to the Cushings my thyroid had ceased to function, all the ups and down have just been too much for it. The part of my pituitary that produces the ACTH has also given up the ghost, I am not yet on medication as Rose is a secretor and already producing enough to put me in the normal range. We are currently in a wait and see mode where I try to get as healthy as I can in what ever time I have so that I can better deal with whatever is to com.
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