Health knowledge made personal
My real name is Jean, and I am a female, age 56. I live in northeast Ohio, and I am interested in art, writing, nature, animal rights and health care rights. Since 2001, I have been getting progressively disabed, with trouble walking, and muscle pain and stiffness, caused by exertion. My first symptom was severe pain and stiffness in my sacroiliac area, that spread up my spine into my neck. (No doctor has diagnosed this, yet!). Then I started getting very stiff in the mornings and had trouble getting out of the bathtub, because my knees got sore and weak. Lately, I have been feeling ill, and have rashes that come and go every day. I think this means I have a systemic disease. I lost my job (cashier), because I am unable to stand too long, and moved into a basement apartment, because it is hard for me to climb steps. I have been referred back and forth between different doctors, and no doctor has diagnosed my trouble walking. Every doctor says something different, and no one tells me why my blood pressure is so high 154/92. One rheumatologist said I had osteoarthrits (OA), (in my spine, hands, knees, ankles and neck.) But this does not explain my stiff sore muscles. I thought whole body OA was not normal at my age, so I wanted to know if it was caused by a systemic disease. But my doctor did not answer me. Another rheumatologist said I could have sjogrens syndrome (dry eyes), from a positive blood test. He said "even if you have it, there is no treatment for it!" And last month I had a positive CCP test (for rheumatoid arthritis), but he said "it does not mean anything, because my other patients have higher abnormal results that you have." This makes no sense. Why should a doctor take tests, if abnormal results don't mean anything? Next, a neurologist said I had myasthenia gravis (MG), from one blood test: AChR. She said it causes fatigable muscle weakness, without pain. I told her my muscles ave very painful and sore when I use them. She prescribed prednisone, and it made me sick. I did not feel better, and my muscles still hurt. She ignored me when I told her that a different neurologist said I did NOT have myasthenia gravis, based on my EMG tests (nerve conduction tests). He told me that I did not have a neurological disease, and not to come back. The first neurologist wants to give me immunosuppressants for my bone marrow, for the rest of my life, that she said have severe side effects, and that I would have to have blood tests every two weeks to see how the treatments are affecting my body, although I am not even sure if I have MG. She wants to give me a CT scan of my thyroid (a CT scan gives the equivalent of 220 x-rays all at once.) She said I could have thyroid cancer from the MG, and would need a thyectomy! I am very upset, because I have had 79 x-rays over the years, (of my spine, hands, knees, ankles, and hips), and each time the doctor says they were normal (although they showed osteorthritis). The last set of x-rays showed that my knee caps had bony ridges on the tops of them, and they were "spurriously elevated." I asked for the results because I had seen the x-ray on a computer screen, when the technician was looking at them, and my knee caps looked hugely deformed. The theumatologist said I had softening of the cartilage beneath my knee caps. He sent me to get a knee sleeve, and it caused me severe pain, so I can not wear it. Why does it hurt so much? And last month, the rheumatologist said they found protein in my blood and sent me to a hematologist. He said they found it by accident, because they were not looking for it. When I went to my appointment, it was in the Taussig Cancer Center. I got very frightened. No one had mentioned cancer. The hematologist who orderes a whole set of blood tests, and said I had something called "monoclonal gammopathy." And that I have to be tested every six months to see if it gets worse. I wanted to know what tests he ordered and his secretary said "is there any reason you want to know?" And no one would tell me. Then he told me that in the second test, the protein was not in my alpha region, and that it was in my beta region, so he did not think I had bone marrow cancer. What does all this mean? Are the doctors experimenting on me? I am in pain. My muscles are getting stiff and it is hard to moive my body. If I sit on the floor, I can NOT get up. I also have trouble turning over in bed, because my back is stiff. I am getting terrible medical care, and I have to find a job, and I am mobility impaired. I am unable to walk one city block, and feel ill every day. I started searching the internet for answers. I hope someone at Wellsphere can help me.