[darlindeb25]

Ok, here's the report! I am very impressed with him. He is very thorough, spends a lot of time with you, he even has a personality!!! First, we discussed my headaches, he asked when they start, when they end--when I told him I ALWAYS have a headache, that I do not remember NOT having one, he got this strange look on his face. Next we talked about my memory issues, how I can't remember words, or how to spell them, or can't write a word the way a person is spelling it--he then sat down in front of me. First thing he did was ask me to open my mouth wide, and he stated my mouth is too small (first time I ever heard that one, wish I had it in writing)and my air passages are too small, asked if I snore, to which I told him I am told I breathe very heavy when sleeping, then he did all these tests with my eyes, my jaw, my facial bones, my neck, he asked about my sleep patterns. Of course, he has ordered a sleep study done, yet is positive I have sleep apnea. When I got home, I read up on sleep apnea, one symptom jumped out at me...waking with a dry throat and mouth...this has been happening to me for months now, along with the fact that I have 2 sons that have been diagnosed with sleep apnea, one with a sleep machine.

Then we did lots of neuropathy tests, the tuning test, "close your eyes and what am I doing tests", is this stronger or this, push me hard--you know, all those tests! Many, many tests that the other doc never did!!! He says I definitely have small fiber neuropathy involvement, says he is afraid that even after 8 yrs of gluten free, that I probably still have a malabsorption problems. He says that even if I am taking my vitamins religiously, and even if they are showing up in bloodwork, he wonders how well I actually am absorbing them!

He is running a celiac sprue panel (which has never been done), ordered parts of a poly-neuropathy panel 1, a stroke-lipid panel, parts of a muscle disease panel, restless leg syndrome panel (which includes many of the different vitamins)----and he ordered PT that is a heat massage therapy for 5-6 weeks, 2x's a week for my neck--says my neck is just too tight and part of the headache problem. Plus he is having an EMG w/needle done on my legs.

I told him I can deal with cellphone vibrations in my feet, I can handle burning feet, and all those other problems, that the pain is managable for now. What I want, is to know that I am doing everything I can to stop the progression! He said this is what he wanted to hear from me, and that we will try to find those answers for me. He said, "We will start with these tests and go from there!" He spent the better part of an hour with me. I have no complaints. I learned so much from him in just one appt. We also are weaning me off the Topamax, which is great, I prefer no meds if I do not need them. He says it isn't doing me any good, not if I am still having the headaches anyways.

Thank you Dr. Gudesblatt for emailing Doc John!!! Keep the faith, there are good docs out there, keep looking!!!

Deb