don't worry about posting to the wrong spot. I still do it almost two years later. I still don't have the nack for navagation very well.
Sorry your neruo doc didn't listen to you about you gum pain. He did answer you in a stange way. I hope you find someone who can figure out what is going on to help you. ginnie

Hum, my neurosurgeon just sent me a report from my brain MRI ... I have something called a chiari malformation. Creepy ... almost as creepy as the RSD. By the way, his report indicated that I complained about jaw pain and that I have had several root canals and extractions in the lower mouth.
BUT, as I try to tell every doctor ... my pain isn't in my jaw ... it is in my MOUTH ... and I don't have ANY TEETH in my lower mouth. Anyway, thought all of you would appreciate the story anyway. Have a good weekend.

I am sorry to hear that you have multipal things medically going on. The RSD in your mouth is not so good I know. I have heard of Chairi malformation. There is a forum here for that. If you would use the search bar at the top of that page and type it in, it should lead to that forum. I do know there is help for that disorder. I hope your neurologist is a good guy and that you like him. I sure think that makes alot of difference. Having faith in your doctors relieves alot of the fear. Please keep in touch. I will keep you in my thoughts and prayers. You already know there is the RSD forum. I hope you make alot of friends here. Compassion is what I found here for sure. Please take care of yourself. ginnie

You mentioned mouth pain in connection with former root cannals. do post to Bryanna, on Private messaging if you want. She may be able to help with any questions you have regarding your mouth, and possible problems left over from the root cannaled areas. gosh I wish you could get a diagnostic on that. Why is your insurance company giving you a hard time over the testing?. That is the only way to get the diagnosis. I do not understand insurance companies. appeal their decision with a doctors letter, that sometimes works. Have a good night. ginnie

Thanks Ginnie! Unfortunately the neurologist I went too was nasty but the neurosurgeon and the anesthesiologist and pain management doctor were all okay ... and my primary care physician believes me and has been really good lately ... the more tests results they send to her and the more reports they send her showing that I don't have MS, cancer, brain tumor ... the more she sees that I have a really rare problem in my lower mouth ... even my old dentist of 15 years ... after I stopped in and told him about this ... is seeing that I wasn't just complaining about dental pain for 7 years for no reason at all. Actually, my insurance company has allowed me to have all of my tests with no questions asked but I am just concerned that if I start trying too many neurologists they will finally say that they can't run these tests over and over again ... so I'm going to go back to the same health system where my neurosurgeon and anesthesiologist and pain management doctor are and that way the next neurologist I see can access my test results from the other doctors. Sigh. Wish we luck on finding a neurologist I can talk too ... that first one was a real stinker ... he acted like I was touched in the head ... like I was wasting his time. One woman on another website mentioned that she went to 7 neurologists before she found one that seemed to understand what was going on ... sign again ... but life's good otherwise ...

Hi ms janice, I know you hate to go from doctor to doctor, no one likes it. Unfortunately it does take that sometimes before you find one that has the qualities and knowledge to help you. My PCP found my Neuro. I actually begged him to find one, that had compassion and soft caring mannor. He did find one for me, and he was a blessing in my life. It was not fun before that, as I had gone to several on my own. I was afraid to try again. Tell your PCP maybe that you are not having much luck, and maybe he will know who you can turn too. My PCP happens to be a good egg too. I want that comfort for you too, to know your doctors are all there for you. I will keep you in my thoughts and prayers, while you search for an answer. ginnie

I think I will definitely talk to my GP! Actually, I have to call her Monday and will probably go in to see her ... the neurontin that the pain doctor put me on two weeks ago has already decreased my mouth pain from a 10 to a 5! I did notice though that the front of my legs have been itching and burning and that happened to me one time when my sugar had gone up ... so I'm having blood work done next week to just to keep track of my sugar. I hope I'm able to continue on the neurontin ... it has helped tremendously but if not I guess there are other meds I can try.

Just wanted to mention that I've seen several websites where those who are taking neurontin feel that it has caused lots of dental problems but I had all of my dental problems and lost all of my bottom teeth before I went on the neurontin ... so maybe RSD is the cause of the dental problems ... who knows though ... but it is a thought.

I am so dissapointed for you! I just hate it that your doctors are not listening to you. the more I hear about this RSD, the more I hate the condition, especially because people are being ignored and treated like they are nuts. That doctor should never get testy with you. There is no excuse in my book. I lost a neruo doc, because I dared to say "NO" and question him. I wanted to be taken seriously, and he didn't want to listen. This happens and I would keep going until someone listens to you about your RSD. This disorder is not in peoples heads. What is wrong in the medical community when it comes to this condition? does anyone know why this happens? So sorry Janice, just keep on trucking to get the help you need. In the meantime I am going to do some more research about RSD. I just feel bad, when patients arn't getting listened to. ginnie