![]() |
![]() |
![]()
A Long Road To Diagnosis! The first time I really realized that I had a serious problem was March, 1999 on a flight home from Salt Lake City where we had been skiing with friends. I tried to read a book and my vision was so blurred that I couldn't make out the words. Things did not improve, so I went to my PCP who diagnosed me first with, high blood pressure, then with diabetes and to round things out, next with glaucoma - all within a matter of weeks. I asked him if it wasn't kind of strange to have all of these things happening at once, but he said no, that it was just a coincidence. Things continued to go down hill. I started to lose my hair, but got increased hair on my face. I got strange purple marks on my chest and arms. The doctor told me they were from being in the sun too much when I was young. I kept telling him, several times in writing, that I thought he was missing something, but he assured me that he wasn't. He sent me to a psychiatrist so that I could deal with stress. Blood tests showed that I had extremely low potassium levels and I was instructed to take multiple potassium pills. Next, I was diagnosed with enlarged red blood cells. The oncologist that I was referred to could not figure out what was causing this. One of my worst problems was that I was unable to sleep and very hyperactive. After only about 2-3 hours sleep, I would get up in the middle of the night and iron or vacuum. My house was never so clean! My husband thought I was crazy. My friends and neighbors became concerned because my neck was huge, my face looked funny and my body was swollen, but my legs and were like sticks. I had had thyroid surgery in June 1998, so that was eliminated as a source of the problem. I also had masses on my breasts, irregular pap smears and a fungus infection in my mouth. There didn't seem to be one part of my body that wasn't having some kind of problem. All these ailments had a very detrimental effect on my ability to perform at work. I am a 7th grade Geography teacher. Unfortunately my classroom is on the second floor. I would go to work early so that no one would see me trying to pull myself up the stairs. One time I knelt down to put something in the bottom drawer of a file cabinet and couldn't get up. I went into total panic because I had a classroom full of kids and I didn't want them to realize that I had a problem. I finally managed to crawl over to a chair and pull myself up. The worst part of it was that by the afternoon my vision was so bad that I couldn't read their papers or see anything clearly. Some days I was afraid to drive myself home. To top things off both of my children chose this time to get married and within four months of each other. I almost didn't make it to my son's wedding.
Through all of this I was seeing many specialists - an oncologist, a gynecologist an eye specialist, and an endocrinologist who is also supposed to be a Cushing's specialist. (He felt very bad after I was finally diagnosed that he had missed it.) Actually, it seemed to me that all I did was go to one doctor after the other. About the same time, my oncologist was insisting that I needed to immediately see a neurologist, who all seemed to be booked up for the next month. My neighbors asked a friend of theirs who is a neurosurgeon if he would see me as a favor. On a Saturday morning when he happened to be in his office alone, he called me to come in. After listing my symptoms he immediately diagnosed me with Cushing's syndrome. I was so relieved to finally have a name for my problems even though I had never heard of it. My husband looked it up on the Internet and sure enough, I had 13 or the 15 symptoms listed. Unfortunately, my PCP still was not convinced and refused to put me in the hospital where the oncologist, the neurologist and the neurosurgeon thought I should be immediately. My PCP wanted to get scans first, but there weren't any machines available for another week. When he told me this, I just sat in his office and cried and cried because by now it seemed like there was one obstacle after another and that I was never going to get help. You might be wondering why I didn't change doctors. Well, I have always thought that doctors were gods. He seemed to be so sure that he was right and he did keep referring me to specialists. But, he never did listen to me because I brought letters to my appointments with him expressing concern that he was missing something.
The neurosurgeon came to my rescue and put me in the hospital on his own even though that was against my insurance company's policy that claimed that I must be admitted by the PCP. Of course, this led to a long fight about who was going to pay the bills. We only won this battle because the neurosurgeon told the insurance company that he would testify that they caused me permanent damage by their delay. So after almost a year, all of the bills were finally paid. Oh by the way, I immediately changed doctors when my PCP refused to admit me to the hospital and of course, I have also changed insurance plans!
On November 12, 1999 I had surgery to remove my adrenal gland and a tumor. I am happy to report that all of the symptoms disappeared after the surgery. I can see clearly without glasses, the high blood pressure, diabetes and enlarged blood cells disappeared. (The oncologist thinks that they were a direct cause of the Cushing's even though they are not listed as one of the symptoms.) My hair has never looked better. I feel like I have experienced a miracle! After 14 months my other adrenal gland still hadn't kicked in so I had to take cortisone every day. I finally changed endocrinologists and the new endo gradually reduced my cortisone until now, I do not need to take any! Today, I feel wonderful and extremely thankful to have survived such a terrible disease.
|
|
comment on this page
email this page
print friendly
