I agree with both descriptions

September 21, 2008 at 4:45 pm

But I have to admit that Julie? Your explanation has worked the best for me with both relatives and with doctors.
I found this out when I’d sent copies of the NIH explanation of CIDP to family members to try and give them an IDEA of what was going on.
The key word was ‘demeyelination’. A family member’s spouse has MS and asked specifically about this part-I explained that yes I have ‘d-m’ but not in the brain as with MS, but at the extremeties. The pain of it all was grasped immediately. And that it could be serious too.
To many new doctors I have the luck to see for various reasons the MS/d-m/extemeties explanation has been the fastest way to refresh them on ‘nerves course #101’. It’s especially important for any anathesias given for any procedues as MS-er’s often react badly to many anathesias. This has saved me a great deal of possible added new side effects from surgeries and such.
And, we all experience doctors who have short attention spans.
As for normal folks? The MS ‘cousin’ description is good as it gives people a very good clue that this is a ‘NOT GOOD’ condition, but not catching.
It’s frustrating, but it comes with the territory I guess.