Only a guess

Hutch,

These are only guesses, but they fit with my observations about the symptoms I experience. Still, your best course is to ask your neurologist what he means by “active demyelination”.

When I was first diagnosed, my NCV studies were classic for CIDP. A year later, the demyelination was significantly decreased, although I still had some. That is, I had more nerves myelinated than the previous year. In that sense, I did not have “active demyelination.” My guess is that this is what your neurologist meant.

However, I still have symptoms, responsive to treatment, but with relatively rapid relapse. So while overall I have more myelin than a year ago, the only reason that I do is that the treatments worked. Even if we ever get to the point where the NCV studies look normal, I doubt that I will ever be without some sort of treatment. What specifically about your NCV studies leads them to believe that your nerves are irreversibly damaged?

As another guess, just because you have damaged nerves, that does not mean that you won’t continue to have demyelination of the remaining decent nerves. I suspect the extra IVIg is to help keep your remaining decent nerves from getting further damaged. If I am right, then I hope the doctor is not planning on dropping the treatments once you are declared disabled.

As a final guess, I suspect NCV studies are not particularly subtle. The entire nerve bundle is stimulated, and the velocity down some relatively large fraction of the aggregate is measured. I could be wrong about this, but if a few individual nerves are demyelinated while the majority are not, then the NCV might look normal even with some demyelination. I don’t know if that would be enough to cause symptoms, though.

MarkEns