Diagnosing my CIDP

November 16, 2010 at 10:42 pm

PCP didn’t know. Neurologist didn’t know. Went to ER w/ symptoms of peripheral and bilateral pins and needles, numbness and balance trouble. Dx: Vitamin deficiency (even though blood work did not support this.) Second ER sent me for a Cat Scan which was negative. Sent home and told I was not in any immediate danger- needed to see PCP. I got into a University Hospital. Was told it was from effects of a flu shot. Told her I didn’t have a flu shot. I have a nursing background- I specificallyasked for an EMG and a spinal tap. I thought I had MS or ALS. She refused to do it. Assured me it was not either. She sent me to another Neurologist in the same University Hospital. I was told that over 100 plus tests had been performed and everything was fine. He asked if I had ever heard of “Psychosomatic Illnesses. I told him I had heard of it. He asked if I was see their “In house” Psychiatrist. Told him I would IF HE WOULD ORDER AN EMG AND LUMBAR PUNCTURE. Finally agreed to an EMG only. CIDP was discovered. I was sent home to await treatment. I couldn’t hardly walk. Had multiple falls, and became paralyzed from chest down before any treatment was started. Hospitalized over a month. Loading dose of 5 IvIg plus 1,000 mg Solumedrol given. Developed 3 blood clots in l.leg and multiple in each lung…….1 1/2 yrs. later I am still in wheelchair. I am not paralyzed but still a lot of numbness. Can transfer self and walk 100 ft. with walker and afo’s. I HATE, HATE, HATE this.