It will be a year in July since I got my diagnosis. I went to a specialist because of loss of hearing in my right ear. He put me through many tests and also an MRI, thinking it could be a tumor. The test came back negative. He was unable at the time to find the problem.
In the meantime I was in my home walking around when suddenly my leg locked up at the hip and pelvis. The pain was so bad I could hardly stand it. The next day I went to the emergency room. The doctor took x-rays and said it must be a pulled muscle and sent me home with muscle relaxers which did not help a bit.
I then went to see my family doctor. She had just taken pregnancy leave and I saw a nurse practitioner which I would not have done under normal conditions, but the pain was awful it was just not getting any better. She seemed concerned that it could be something on the inside of my body and sent me to the hospital for a CT scan. The girl doing the scan was having a problem with my veins collapsing or blowing as they called it. They could not give me the dye because of my veins, but they said if there were any problems they should show up, but maybe not as clear as they could be. Well, this scan came back normal but said she thought my problem could be constipation and to take some metamucil or citrucel. Needless to say, that was the end of the nurse practitioner. That was a waste of my time and did not help my pain. I had been in pain for sometime at this point.
I then remembered my husband's doctor was a bone and sports medicine doctor. He took x-rays, but nothing showed up. I was beginning to think I was nuts. He told me that sometimes hairline cracks did not always show up. He sent me to the hospital for a full body test of some sort. The test came back finally showing I had a fractured pelvis. He said," You need to see your family physician to see what is wrong; to fracture for no reason is unusual." This had happened in September and here it was January. I was limping and thought I would never be able to walk normally again.
Then after I had given up on my hearing, the ear specialist called me and said you need to come in and discuss this abnormal blood work. I was nervous when it was put to me in such a matter of fact way. This blood work had been taken in July and here it was January. I did not understand why it had taken so long. I had been so disgusted with my pelvic problem that I had forgotten about my ear and had missed some appointments, so that was my fault.
The doctor asked, "Have you been feeling okay and where have you been?" Then he told me I had lupus, scleroderma, Sjögren's, and polymyositis overlap. He made me an appointment with a rheumatoligist. Since then I still have no hearing in my right ear and my hands have been affected. I have a hard time opening my eyelids and I also have to watch to not skin my fingers as they heal very slowly.
I am going to start seeing the doctor more often and taking better care of myself. I think I am somewhat still in denial but I know I just do not have the symptoms and not the disease. I hope I have not been a bore and this helps someone out who is in need of answers also. Thank you for listening.
New email address needed.
Old Email Prefix: Eve-Sco
Story submitted 4-27-02
Story posted 5-5-02
Email note posted 01-21-05 SLE
Story Artist: Shelley Ensz
Story Editor: Judith Devlin
The story on this page is featured in our book, Voices of Scleroderma Volume 2! ISN.
SCLERO.ORG was the world's leading nonprofit for trustworthy research, support, education and awareness for scleroderma and related illnesses from 1998 to 2021. It was a grassroots movement from the original Scleroderma from A to Z web site, which was founded by Shelley Ensz. We were a 501(c)(3) U.S.-based public charitable foundation. We closed this web site and our nonprofit agency in April 2021.