Originally Posted by Senjuro2

I've been diagnosed with neuropathy for about 5 and a half years now. Started out with a diagnoses as "ICU Neuropathy" because I had a grand mal seizure and progressed until it was status epilepticus, at the hospital I was put into a pentobarbital coma and was expected to wake up in a few days. Well, weeks went by and "a few days" turned into a month-long coma and I was in the hospital another month after that for recovery. Because I was so tall, and the nurses took such poor care of me, my feet were left hanging off the bed and I developed a bad case of foot drop. Bed sores every where and the whole deal, my parents were my main care givers, but even they couldn't stay there all the time, I'm 1 of 7 kids, and my mom needed to take care of them as well as me, and my dad has a very demanding job. But I digress, when I did finally wake up, I was practically a mad man, then shortly after I woke, I had immeasurable pain in both feet. This was all in 2005, had no problems (other than epilepsy) before this. So now I had useless numbed feet and extreme pain, the doctors in the hospital gave me tylenol 3's or something similar, this did not even begin to take the edge off. Finally, along came a neurologist who said he had seen cases like this before, and he diagnosed me with ICU Neuropathy. I began taking Neurontin for the pain and a slew of other meds to control the seizure activity. Slowly, very slowly the pain began to get better, and I saw more and more doctors about my feet and no one could do anything. Until I saw a Peripheral Neurologist, he later diagnosed me with CIDP and referred me to yet another specialist, and this specialist is the one who I am most thankful for. He was in Atlanta (7 hour drive) and prescribed IVIG as treatment. The pain began to get even more less severe over the course of 4 years, then I plateaued and decided to stop the treatments (it's very expensive and it wasn't helping any longer) Now I go to see the guy who referred me to the other guy, and he says to me that it's not CIDP because the pain isn't getting worse. Well, low and behold a few years after that, the pain is getting worse (Most likely because I stopped IVIG) And now he doesn't even know what it is, he just throws more pills at me in the hopes of somehow controlling it. I'm going to have a 5-day study done to see where the seizures are coming from soon. Shortly after that I will have brain surgery... Not sure if I can recommend anything besides neurontin and lyrica and vitamins for pain, because nothing else has worked for me besides pain pills (and who wants to be addicted to those?) Thanks for reading my rant, lol.