I am a 47 year old female with multple autoimmune disease processes that do not fit in one specific disease such as lupus, RA, etc. My first autoimmune disease started in early 2002 with psoriasis on my scalp. This was followed by episodes of diarrhea so severe I was at the emergency room twice, due to the severe abdominal pain. Approximately 2 years later I began having severe pain and swelling in the left hand and wrist that radiated to my elbow. I saw several orthopedic specialists and was misdiagnosed with complex regional pain syndrome. The pain and swelling became so severe I was hospitalized and received 9 nerve blocks over the following 4-6 months. April 2005 I awoke one morning to find I could not hear in my right ear. I was an Audiologist and went to work and had my hearing tested. I was diagnosed with autoimmune hearing loss and my affair with prednisone began. I now have permanent hearing loss and my hearing continues to fluctuate. Since my hearing loss, I have also developed joint pain and swelling, severe muscle pain in both legs, lower back and neck pain and swelling, vertigo, daily nausea, extreme fatique, difficulty sleeping, headaches, nosebleeds, gait disturbance, positive antiphospholipid antibodies, purple colored rash on arms and legs, swollen lymph nodes (neck), low grade fevers., and was found to not absorb copper (I currently take copper tablets). My symptoms change from one day to the next. My pain is a constant. I have been to multiple physicians and have traveled to Duke Medical Ctr. (twice) and the Cleveland Clinic. I have received an endless number of tests and have taken pretty much every immune suppressing drug, with no help. I tested positive for Lupus once, with the tider configured for another autoimmune disease I do not have. I saw a new Rheumatologist this week that told me "you have received so many tests and taken alot of drugs with no response. "medicine has not caught up with some diseases and I believe that is your case". He took away any hope I had for a diagnosis and treatment.
Currently, I can no longer drive or work. I live from one dose of pain medication and muscle relaxers to the next, to try and control the severe pain. I receive disability benefits and want to return to work. What I really want is my life back. I feel like this is all a terrible nightmare and soon I will awake. I do have a very supportive family, for which I am grateful.
I don't know what to do or where to go next. I have been seen by Rheumatologists, Neurologists, Orthopedists. Any help you may offer is appreciated.