Reply To: How long after onset did you begin to actually lose strength, not just weakness?
Hello all! My name is Arthur. I was just diagnosed on 4/3/2015 after years of slowly progressing muscular weakness and pain, beginning in 2007 . I have had MRIs, blood tests, a biopsy, prednisone and a host of incorrect diagnosis (still have bills for all of this). It was not until late last year when I began to experience chronic weakness and loss of strength in my shoulders and legs (began tripping and finding it more difficult to walk) that I knew I had to become more aggressive in finding out what was wrong.
In January, my primary prescribed prednisone while trying to find an opening at any local neurology clinic. It helped while I was on the full taper dose. Once I tapered off, the symptoms returned with a vengeance. Now I was experiencing tingling and weakness in my hands and feet. This progressed to foot drop then my calves stopped working. Now I can barely walk without a stick. I cannot open jars and even struggle opening snack bags, like I need to do that! 🙂
I was finally able to get an appointment with a local neurologist. This was only after constant calling by my wife, my primary and other concerned friends. If they had not helped, I would still be waiting for an appointment scheduled for May! They did the conduction study and EMG. No doubt about it. I was diagnosed with CIDP!
Now I am waiting for the insurance company to approve treatment. The Neurologist want to start with a week of Plasmapheresis. Then move to IVIg if necessary.