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Sharon's Story

November 2, 2007

Just got the results of my petrosal sinus sampling which indicates that the tumor is in my pituitary. Never was I so happy to locate a tumor and know now I can have surgery. I am sure most of you know how I feel and understand perfectly the relief of knowing what you have known for probably a very long time that something has been wrong and now it’s legitimate. Two weeks I will see a surgeon and hopefully will be a success story.

I feel that I have had Cushing’s for at least seven years but only knew the name of it since seeing Sharmyn on the TV, discussing her ordeal with this little known disease that is often misdiagnosed. I had all the symptoms she had plus a few more and had no doubt that I suffered from the same malady. From March 2007 on, I was on a mission that I had no intention of backing off until I got an answer.

I had questioned continuously about my unexplained weight gain and various ailments repeatedly from my GP to the rheumatologist I saw every three months for Fibromyalgia, of course. They just handed me another diet or shook their heads not knowing what to say. I felt like a hypochondriac, felt sure I must be doing something wrong with eating, or exercising. I tried everything I could to lower my cholesterol (bad reaction to meds or they just didn’t work). My muscles were weak and painful, cramping up easily. I had flushing, fatigue, bruising, sleep problems and all over pain. Years past, no answers from any of the doctors I saw. None of them took notice of the way I was gaining weight and the way it was distributed, even though I constantly questioned them about it. They never mentioned Cushing’s at all -guess they were absent when that came up in med school. Even when I confronted them finally with the information, they kept their heads down in the chart and kept saying it couldn’t be Cushings. I did insist on blood work and when that came back he didn’t say cortisol was a little elevated, apparently not feeling it was at all abnormal. It was a little high when I read it and made an appointment with an endo.

I did not realized at the time just how hard it is to find one that was that familiar with this rare but not unheard of disease. The doctor I went to did listen, but said would test because he saw other things in my blood work that might be a problem and if I wanted to look anything up on the internet, I should look up Metabolic X. Ugh! Another one of the diseases they want to pin you with without proving it because it could not possibly be Cushings…never-never! Well with the next test, 1mg dex test, I got a call saying it was high but—can’t be Cushing’s. The doctor did a 4mg test, again. Can you guess? It was high. Now I had this doctors’ attention. I guess he figured he had a live one.

By that time I found this site and saw Dr C from my area of the country. He was listed as a helpful doctor, so I made an appointment…six month wait! The local endo wound up mentioning Dr C as the doctor to go to who had experience in Cushing’s patients and I should get a second opinion. I did and from there on I found an easier path to an answer that was long in coming. The new endo was understanding and listened and retested to make sure the test came out positive. He also ordered a salivary which also was high and was not put off by 2 neg, 24-hr urines. He felt I had Cushing’s by the labs and pictures I showed him from over the last 7 years. He talked about how hard it was to locate doctors in this field that are good or even practicing in the area. He said he would check to see if the next test that was more invasive (petrosal sinus sampling) was being done at Mt. Sinai in NYC and if the neuro that was experienced in this matter was still there. They were and he made the arrangements very quickly. I had it done and the source of the cortisol is known. Once I found the right people with experience who were able to recognize this disease, it was not long before I had hope someone would do something to help me get better. Seven months is not such a long time to finally come to this stage, especially when reading everyone else's story. Mine is a piece of cake. I did go through years without being diagnosed and feeling horrible, both mentally and physically. I hope this disease will be more recognized in the future and doctors will at least be opened-minded, no matter how rare it is suppose to be. I happen to think that it’s more prevalent then they think anyway and that obese people should automatically be checked to rule it out. I know the test is sensitive and it doesn’t always show cortisol as it could be cylicle, but all options must be looked at for that overweight person who might have Cushing’s. I was the rare case that they were not listening to-handing me another diet and telling me it was my fault, disregarding all the other symptoms as the result of my weight.

My bio and what I have been through is not much different than most of the other members of this club that we are not thrilled about belonging to. But we can share our stories, and I do like knowing I am not alone and we seem to be going through much of the same experiences. I just wish more doctors would come aboard and read about the hard road most of us have traveled to find answers. Answers they should have been more readily provided to us.

I will let all know what happens at my next stop. I am hoping for a success. I will think positive-and with humor.