But with all his making me feel as though I was eating up his precious time, he ended up spending 2 hours with us. He suggested a great Bangladeshi restaurant for a late lunch and it ended up being a 12-hour day for us.
So here's what I learned:
1. Dr. Rye is not of the opinion that iron solves everything. Because all I know comes from what I've read on RLS.org, and everything I've watched and read had to do with iron and the necessity of infusions for those with low ferritin levels, I was QUITE surprised when he said that my ferritin level of 30 was not bad. He doesn't deny that iron helps and he does order iron for some of his patients, but he doesn't seem to think a lot of those doctors who focus entirely on iron being the culprit. He said something like, 'If the problem is iron, then the question should be 'Where's the leak?'"
2. It took forever for me to successfully get in a question on what I should do if I found that the iron infusions weren't enough. Right now, I'm 90% better than I was a month ago, but I wanted to ask just in case the effect wears off sooner than expected. He said that the infusions should be good for 9 months--which is less than the year I had expected. He said if they don't help me enough then we could look at medication. He said he liked pramipexole because there are less problems with it--and I immediately asked if that wasn't a dopamine agonist. When he said it was, I told him that so much of what I've read and heard on RLS.org was against the use of D.A.s. Told him Mark Benkowski said, "Dopamine Agonist = Dopamine Agony!" That annoyed him greatly, and he assured me that dopamine agonists in the hands of an expert can be very effective. He agreed that the average general practitioner shouldn't go around prescribing D.A.s, but he follows his patients closely and would stop or change things if problems came up. I was still a little leary until he said he's been taking the drug for 20 years himself.
3. I'm a little confused about this, but as much as he is certain that not all RLS is related to iron, he and his team are studying pica behavior as related to RLS. The very first thing he asked me was whether I ate ice, citrus, clay, ate paint or plaster off the walls. I knew immediately what he was talking about and told him that my first job was as a library page on the reference floor. Out of boredom, I read a small book on pica behaviors. the need to eat odd things because of iron deficiency. I had been trying to win the doctor over with charm, but my knowledge of pica is probably what made him spend more time with us.
![Wink ;-)](./images/smilies/icon_wink.gif)
This is all I can remember for now. There was so much information and I'm still fatigued. (This was the 5th doctor's appt of the week.) But Dr. Rye wants me to get a sleep study done even though I've been trying to avoid it. I told him that my dentist is making me a mouth guard that is supposed to help stop snoring/apnea, but he said that is only for mild cases and how do I know I have a mild case without a study? I didn't get to tell him that my ENT was certain my case was mild because of the way my uvula was. (Guess it's too short to cause apnea? I forget. Somehow he could tell in the examination.) He didn't think 2.5 hours was a very long way to come and felt I should get it done there at Emory. But I'm wondering why I couldn't just have one here.
He gave me two prescriptions: one for Ambien to take as needed and in particular to knock me out for the sleep study. Said it's best if people are really knocked out cold when they get a study done. He also prescribed Sinemet to take as needed, but told me to take no more than 3-4 times a week. Very happy to have both: I used to take Ambien until we moved to Birmingham where my new doctor refused to prescribe, saying that he didn't want me showing up naked in a hotel lobby. Dr. Rye took our Lord's name in vain when I told him that, which I didn't appreciate. But I am glad that he is not of the same opinion.
That's all I can remember--except that he drew blood for DNA studies and also to check my iron. I guess I'm a study subject now.
Sleeping better but still
Sleepy