where do you live (generally)?
Butterball–I am the Dx Journes with my husband, who we are beginning to suspect has CIDP (we should know in the next few months). But I have to say that dealing with neurologists here in the Central PA area has given me an impression that many neurologists are fixated on ALS (b/c that’s where the big grant money is, perhaps?). My husband has also been told several times that he doesn’t have ALS. however, he is still very ill and getting sicker by the month. Reading this message board has convinced me that we need to get a Dx FAST b/c if it IS CIDP, he needs treatment to prevent further deterioration.
so…my unsophisticated, gut-reflex reaction to your plight is to suggest (respectfully) that you should try to find a nearby neurologist who is familiar with the types of ailments you might suffer from.
I have noticed that if you post where you live (generally) and ask the folks on this thread for suggestions, you are likely to get some decent neuro suggestions.
Best of luck. Hang in there.