Really embarrassing question but hey we are all family right?

Anonymous
November 5, 2006 at 2:00 am

All well said, just chiming in with another “variant”…

It has improved since we raised my IVIg dose, but in the spring I began to realize I no longer KNEW when I had to pee– no leaking, no accidents, but I began to go (whether I thought/felt I needed to or not) every couple hours, like on an automatic schedule, out of fear of what the NEXT stage was going to be. Even waking up first thing in the morning, that sensation just wasn’t there (despite clear proof when I got into the bathroom that I should have been feeling pretty darn uncomfortable!) When I asked my neurologist, he felt that it was definitely autonomic neuropathy, and (in my case) probably unlikely that I was headed into diapers. I do have other signs of autonomic involvement (temperature dysregulation, metabolism issues… maybe some of my previous balance problems) and this one just sealed it, in his mind.

Never a dull moment with CIDP, huh? 😉