Question: After extreme stress over a year ago, I began experiencing some symptoms in March 2015. I have seen many doctors over the last year. I have had 3 past cervical spine surgeries, the latest being Sept. 2014. I thought I had the flu last March...the fatigue was overwhelming, and muscle twitching in my legs, like when your body is trying to fight something. I have been to 4 neurologists, including the Mayo clinic. Two neurologists here believed I had PLS, a form of ALS. After all the extensive testing, EMI, etc.--twice, it was finally ruled out. Clinically, I do not have any signs as well. I have brisk reflexes but they think this is from my cervical surgeries. I have had a brain MRI and one of the thoracic spine. No MS lesions but I do have what they are calling "hemangiomas", three of them in my thoracic spine. I have not had a spinal tap yet and the doctors don't seem to think I need one given the brain MRI to rule out MS.
I have fever at night, the unrelenting fatigue...now I am on oxygen at night, which seems to help a little, leg and muscle spasms periodically, stiffness in my legs and on occasion facial numbness on both sides of my cheeks. I seem to have a really bad episode with my legs every 5-6 weeks. I also have white sores inside the cheeks of my mouth.
My lab work clearly shows something is going on. I was hit by a car as a pedestrian last July and started having muscle spasms in my legs. I think I may have two issues going on. One is with my spine but in my heart I know I am fighting something else. My ANA's keep coming back positive, speckled blood pattern, positive AB antinuclear, RF=9, A/G ratio, Albumin and MCV are at the top cap, monocytes (absolute) are a .8 as are my WBC, .8. I have a dry right eye, per optical. I also have interstitial scarring of the lungs. One doctor thought to check my oxygen level at night and it is in the low 80's. I live at high altitude but I have lived here since 2006 and have never had difficulty before. I have severe joint pain that comes and goes in my left wrist, both thumbs, and my left big toe. I have had a nodule on my right forefinger that was the size of a pea one time and then went away. However, my sediment rate is a 3 and my CRP is a 1.2. I have read that many patients with lupus will have a normal CRP and the size of the red blood cells may hide the true sediment rate. I also have a persistent rash on my chest above and below the bra line. They are raised small red bumps. They do not itch. My GP does not believe I have an autoimmune disease because of the CRP and sediment rate, but in my heart I believe I do. Could you please share your thoughts with me. I have plans to see a rheumatologist but they are booked for several months out. Thank you, XXXXXXX