Reply To: New CIDP patient with variances
Thanks Jim for the information. I’m very naïve about this whole situation so thanks for the links. I had a terrible neurologist who I’ve fired and my new doc seems much better, but here in Naples, FL they may have limited experience. I get another EMG next week which should identify if I have the Axonal variety. My feet are numb which extends to my knees and then I have about 35% feeling in my hands which radiates to my elbows. (I’ve been like this for 4 months so I hope it doesn’t progress further as some others have described.) Due to low protein levels apparently I won’t be able to receive IVIg treatment. I’ll ask about those other options you mentioned, SCIg or PE.
So here’s my current question: what is a good pain management approach? I get “shocks” throughout the day but they’re not that bad. But at times at night my legs feel like they’re on fire, which makes sleeping impossible. Sitting feels better than laying down when this happens, so sometimes I spend the night in my recliner (I’ve ordered an adjustable bed). I’ve been taking 200mg Lyrica 2X a day. It’s hard to quantify its effectiveness. No doctor recommended Lyrica, I had to be my own advocate and ask my pain management doc for it. Based on some comments I’ve seen in forums I went off Lyrica and tried Gabapentin. It seemed the Lyrica was more effective and Gabapentin didn’t do anything, so I went back to Lyrica. When this happens I take a Oxycontin Acetaminophen (Percocet) 7.5/325 which helps me get to sleep for a few hours. Does anyone have any other treatment suggestions and/or tips? Thanks!!