Reply To: Have you relapsed and recovered?

September 21, 2020 at 3:15 pm

JD — Sounds like you’re no better off than I am as far as “recovery” is concerned. I have discovered over the past three to four years that some people do not improve on any treatment. They either remain where they are or they get worse and end up in wheelchairs. I was pretty far gone by the time I was diagnosed, and the first EMG I had showed axonal damage and 80% loss of nerve function in my legs. My diagnosis was slow because in summer of 2015 I suffered major fractures in my pelvis.(My sacrum is now held together by a mess of screws and bolts.) I was told I would be “back to normal” in three months, but I never recovered. I believe the fractures and the surgery/anesthesia (which lasted half a day) triggered CIDP. I grew weaker, lost my balance, started falling, developed terrible nerve pains in my feet and legs. My doctors blamed all of it on the fractures and the nerve damage they caused in my pelvis. I didn’t believe that and began researching. I diagnosed myself, and demanded a referral to a neurologist. On my first visit — a year and a half after my fractures — the neuro said I had all the symptoms of CIDP. An EMG a few days later confirmed severe nerve dysfunction. I can’t even let myself wonder how much better off I would be if I’d been diagnosed earlier. It’s too distressing to think about. I was told it would take about three years to feel real improvement, but that has never happened. I’ve had several relapses in less than four years. My current neurologist, who is considered the best in the area, says I am not responding anymore to Gamunex. I start Privigen tomorrow. I think it’s too late for that simple change to help.