So, I went and had my Nerve Conduction Study earlier this week, and I send a note to my Dr via email:
I came in and had my Nerve Conduction Study today.
Dr. P. said I was still in the "Normal" range, but the results showed a decline since the last test.
What now? My hands and face still tingle.
The Topamax decreases the pain at night so I can sleep comfortably.
I can work and maintain an acceptable level of competence on the Topamax, however the pain level is still at a 3-5 during the day. I can not tolerate being on my feet for more than 5 minutes at a time. I can not walk any distance or exercise in a standing position for more than 5 minutes and tolerate the pain.
I am currently taking 200MG Topamax at 9pm and 100MG at 9am, 100MG at 3pm. By 2pm, the level of pain in my feet is to the point that I only get up to go to the bathroom. My quality of life has decreased incredibly and I am very frustrated with this disease. If my nerve conduction study says I am in the "normal" level, where is all this pain coming from?This is his response:
A nerve conduction study is useful for ruling out many things, but can still appear normal in a patient with pain symptoms. If you feel that the current medication is helpful to some degree, we can make some adjustments to your treatment regimen. Our chronic pain management program here may be a useful resource on strategies to cope with these troubling symptoms. How do you feel?
Dr. L

I don't know about you, but I get the feeling that maybe he isn't really "hearing" what I'm saying!