This past Friday I saw a Neurologist at a nationally renowned medical center. To say the least I was very disappointed in my experience. I have never been treated by a doctor like I was there and left her office in tears. She did not want to hear my story or really listen to me. She seemed to have her own "protocols" to follow and didn't want to answer any questions I had. She said my exam was normal, but that I should get an EMG (nerve motor function test) since I was having burning in my toes. I asked if she knew anything about pudendal neuralgia or knew any other doctors in the area who did and she said that my pain isn't caused by the pudendal nerve because that doesn't refer pain to the feet. Now, I am not a doctor, but the pudendal nerve is the nerve that carries pain/signals to the pelvic floor and that is where the majority of my pain is. She said she didn't know of any doctors who treat it and so she ordered an EMG to check of my legs to check for sacral radiculopathy.
If I wanted that kind of EMG I could have that done locally. I called the EMG technician directly to see if they can indeed to a pudendal nerve EMG and she said they can. I asked what kinds of doctors order them and she said neurologists and pain management docs. Needless to say I am not going back to her. I have an appointment the end of January with a neurologist locally that I respect from a nurse standpoint if i need to see a neurologist again.
I do have burning in my feet which concerns me, but I don't have pain shooting down my legs and the burning comes and goes which would be consistent with a sacral radiculopathy. I feel like it could easily be due to central sensitization (where the central nervous system is "wound up" due to the pain) which would be consistent with the headaches and neck/shoulder pain that I have. I also have some symptoms of Raynaud's phenomenon which would be more of a circulation issue (I have had problems with my hands/feet being extremely cold for a few years now). The neurologist didn't like it when I brought up these possible reasons for the burning in my feet. She even said that Raynaud's is more likely possible with an autoimmune disease and that I could still have something like lupus even though the blood tests were normal. That sometimes they just have to treat based on the symptoms. I have never heard of that before. I didn't tell her that I have read it is possible to have feet pain with pudendal nerve problems....it wasn't worth it.
So, my plan as of now is to go back to the first physical medicine rehabilitation doctor that I saw here in my hometown. She has a special interest in pelvic pain and has been treating a patient with similar pain to me with good success. She is very caring and compassionate and will listen to me and the good thing is I don't have to drive 3-4 hours to see her every time I need medication adjustments. Hopefully she will take me back as a patient once I get all my paperwork faxed back to her. I am also going to see a urogynocologist out of town on December 3rd who treats chronic pelvic pain. I have heard good things about this practice and that they are aware of pudendal neuralgia. I have recently started feeling like I need to urinate all the time. I don't have frequency I just feel like I need to go, kind of a burning a little. So I guess it's good to see a urogyno.
I am doing ok as long as I don't do anything to flare me up too much (a lot of squatting, bending, walking, or sitting). I can't really sit even on my cushion right now for more than a few minutes which is really affecting my life. I think I need to increase my Neurontin again as I am still on a pretty low dose...it's the only medication that seems to help at all.
It's been a frustrating few days. Please keep praying. It's hard to think about enjoying the holidays when I can't sit. Without God, I can honestly understand how people could commit suicide due to pain and depression. Thankfully though, I know God loves me though and is doing this for my good and His glory.