Gray area???

July 30, 2007 at 4:08 pm

I don’t think you’re in a gray area at all. Your case sounds a lot like mine. I have CIDP, replapsing/remitting type. I dealt with it for over a year before treatment. I would be weak, then spontaneously get stronger. It was actually pretty predictable — for the most part, it went along with my monthly cycle! And the “jello legs” — I called them “Bambi legs” — felt like a newborn dear, likely to fall at any time. Resting, sometimes for hours, brought back at least partial strength, but the relapsing/remitting cycle was relentless, and after a year, the relapses were definitely worse than when I first started noticing symptoms. By the time I got IVIG, I couldn’t even stand up from a chair by myself.

If the IVIG helped you, I agree with Dawn that you should talk to your doctor about a regular schedule of treatments. I started at every 4 weeks and now do every 6 weeks (a little rough the last week, but not debilitating). I still fatigue easily, but I don’t get that impossible weakness anymore. If your doctor doesn’t understand your illness and isn’t providing adequate treatment, please look for another. Life is too short!