Originally Posted by R182

My GP and Neurologist, after basic initial blood testing, thought it was PN. After about 8 months I noticed a loss of strength in my lower legs. Since I ride both road bikes and mountain bikes, I am very aware of my fitness level and how fast I ride up hills, etc. Long story, shortened, after my GP and Neurologist were a little stumped, and I requested further testing, I went to another specialist who did an EMG, thorough manual strength test in all muscle groups, spinal tap, and more specific blood tests. I also had an MRI on my lower back.

Results came back with an elevated protein level in CSF, and along with the strength tests (being more weak in certain areas and lacking reflexes) the doctor was pretty sure it was CIDP. I say pretty sure because, as you probably know, these things can be very tricky to diagnose. There are a lot more autoimmune conditions than I realized, which doesn't make me feel very good nor do I wish on anyone.

So, since I can't stay on a high dose of prednisone (60mg daily) we are trying the IVIG. We will evaluate and go from there. I did listen to a doctor from John Hopkins and he diagnosed in exactly the same way as my specialist. Apparently, there also is a doctor at California Pacific Medical Center in SF that has done quite a bit of research on CIDP and similar autoimmune conditions so that is a place you might look into. I can probably get his name if you are interested.

Rich