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Notice I listed the important things first! I was diagnosed with Spinal Osteoarthritis in 1996 by an old country doctor who patted me on the head, gave me some pain pills and told me to come back when those weren't strong enough anymore. I then went to an Orthopedic Surgeon who said it couldn't be OA because I was too young. His diagnosis was a herniated disc. After $4000.00 worth of scans and x rays, he sheepishly told me that I had Spinal OA and he sent me to a pain management clinic. I began receiving weekly depo-medrol injections but when I confronted the doctor after shot #4 and told him I was not feeling any relief, I was told that he was the doctor, I was the patient and I just needed to lie down and get ready for my next injection. Nope. That was the last he saw of me!
From there I went to numerous GPs and finally was referred to a rheumatologist. I thought this was the solution. I would finally get help. By this point, I was having numbness in my left leg and trouble walking, couldn't stand for any length of time, couldn't sit in one position, and my neck and shoulders were in constant pain. I had also begun to experience swelling in my knees, hands and wrists. This rheumatologist did more x rays and a bone density test, agreed that I had OA and said I needed to learn to live with it. He said he had OA in his knee but he didn't let it stop him. He gave me a prescription for Prozac, which is probably why I didn't kill him, and told me he was hesitant to prescribe pain pills because they were very addictive. At no point did he do any blood work or bone scans.
After finding the SHAD list, I started to research things on my own. I found another RD who is very aggressive in his treatments, had gallons of bloodwork done and have a (final?) diagnosis of multiple autoimmune diseases. A bone scan revealed swelling in every joint in my body, blood tests and xrays revealed the presence of Osteoarthritis, Rheumatoid Arthritis, Ankylosing Spondylitis, fibromyalgia, chronic fatigue syndrome, and a colonoscopy confirmed Inflammatory Bowel Disease, and Crohns Disease. We are treating things very aggressively, finally, and I currently do Enbrel injections along with Prozac, Calcitrate D, a Multivitamin, Iron Pills, Propacet, Trazadone and Prednisone, which we are attempting to taper. I wear splints on my wrists due to the development of Bouchard's Nodules and weakening ligaments and I wear a soft cervical collar on my neck also due to loose ligaments and swelling.
Other meds I have tried include Plaquenil, Sulfasalazine, and the range of NSAIDs including DayPro. After many disappointing trials, the Enbrel seems to be working to reduce some of the swelling and also to slow the progression of deformities and nodules.
I have had doctors tell me that I would only walk for 6 months (this was in 1996) and I needed to shop for a wheelchair. I have an electric wheelchair that I use on limited occassions but I have managed to remain walking with crutches and with medical advancements and God willing, I will continue walking for years to come!
I hope by visiting my web page and reading my story, those of you without hope will regain some sense of possibilities. If you are unhappy with your doctor, find another one. If your meds aren't helping, change them. Life does not end with the diagnosis of a serious disease but it is your life and it's up to YOU to take charge of it!
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