I have been very fortunate. I have had the same academic neurologist for 6 years, and he ALWAYS sees me. Now, I only see him 2 to 3 times per year, unless something major is up, or testing is done, but he does return calls. At worst, his nurse does, but usually, the nurse ends up having my doc call me...because nurse can't answer my questions.

The same holds true for my rheum and my GI....no students, unless they are in the room watching my appointment. My GI has a physician assistant that sees me first, but my GI ALWAYS sees me too. It has been this way now for the entire time. I have no objection to students, interns or residents peeking in on my care, but I want consistent care from experts, and so far, I have gotten it.

The biggest problem I run into is that it takes sooo much time to get in to see them....4 to 6 months out for appointments....unless there is something huge going on...and that has happened and they have gotten me in. We just don't have enough specialists....come to think of it...it is like 2 months to get into see my internal med doc too.

What is scary about this condition is that it can exacerbate and one can see a loss of function. I am going thru an exacerbation right now, and am mortified....I don't know what else they can do, given I am on IVIG, and won't take major steroids. Just gutting it out I guess.