| | RA Treatment; Starting over?
In July my physican passed away and now I am forced to start all over, even with the same Rheumatologist who diagnosed me with Lupus, RA and Fibromyalgia regardless what the lab test showed. I am very frustrated and angry at this point.
My nightmare began In 1997 when I was hospitalized for Thrombophlebitis in my left leg, then two months later,(for what felt like a elephant sat on my back), somehow my back muscles tore from my bones; this paralyzed me for two weeks. Needless to say I was in constant pain and I started with other symptons, my ANA titer was up, Sed rate elevated etc.. DX: Lupus. A consult with a Rheumatologist results with her adding the diagnosis of Fibromyalgia. At the time, I knew nothing of fibromyalgia!
The following months were extremely painful, I couldn't walk, had to use a wheel chair then a walker. I just couldn't get better, i continued to complain of pain everywhere, my doctor ordered a Bone Scan, (my doctor said I lit up like a christmas tree in every joint of my body including my fingers), DX: RA/Osteoarthritis. Finally we know what is wrong with me, in addition to Fibromyalgia! Well know wonder I was in so much pain. I also started having episodes where my fingers and toes would turn blue then red and I was forever cold, I was diagnosed with Reynaurds. I also have Hypothyroidism probably due to my Total Hysterecomy in 1991, which my TSH never seems to be normal, its either too high or too low. I can only say when its on the high side I do much better.
RA treatment was not easy as certain medications are hard on the stomach we tried different meds for a few years including prednisone and plaquenil. I was very reluctant to go on Methrotrexate and others due to the strong family history of cancer and stomach problems. I understood that I made the choice not to be treated with Methrotrexate, Humera, or any of those types of meds because I was very afraid of cancer. In 2006 my bone density scan: results showed degenerative changes in both hips and lumbar spine.
Well things just get worse, Colonoscopy and Endoscopy in 2011 DX: Hiatel Hernai, Gastritis, Acid Reflus, then in August 2012 I was hospitalized for Pancreatitis, thus taken off any meds for RA.
The Rheumatologist ran labs and all the were negative, except ANA Titer 1:160 Homogenous, Epstein Barr Positive, Vitamin D, extremely low and liver tests were high. She informed me I don't have RA its only the Fibromyalgia. The only reason my ANA Titer is positive is because of my Hypothryoidism. I was thown back hearing this.
Someone please tell me how can a bone scan show RA/Osteoarthritis in every joint throughout my body and a bone density confirm it as well not be RA??! Especially if you are not on medication that would stop the damage??? I ded ask her to order a bone scan to determine my status and i presented her with a copy of my bone density test. As she read it, she agreed to order the bone scan. It is hard to believe that it was her who told me in the very beginning that I have a autoimmune disease process going on and it does not always show up in blood tests. Why is it different now?? A new test called a CCP is more accurate and yours is negative so she cannot prescribe any medications because the lab test are negative!!!
I asked her; well then what am I to do, i can hardly walk on most days, my fingers are stiff and painful, my hips and shoulders, I cannot sleep due to the pain,.... if your correct and it is only fibromyalgia, what treatment are you going to give me for that??? Response: only if the Gastroenterologist will give approval because your liver and pancreas tests are high! Ask him at your next visit.
Reminder: ALWAYS ASK FOR A COPY OF YOUR MEDICAL RECORDS EVERYTIME YOU GO TO ANY PHYSICIAN. THEY BELONG TO YOU NOT THEM!!! Only the last 5 years of my medical records were sent to the new PCP.
If anyone is going through anything like me, please let me know.
Last edited by Msjolady55; 12-03-2012 at 03:38 PM.