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 went to my second neurologist Monday. This one says I do NOT have chiari malformation. In fact he showed me my MRI picture and my brain is the opposite of a malformation ... the back of my brain is nice and high ... it doesn't go down into my spine after all. HOWEVER, this is about the 10th health care professional who just refuses to even discuss RSD with me. SCREAM for me! With this neurologist, on the form I had to fill out I put, under previous health issues ... RSD/Elbow/2003 and RSD/Wrist/2002. He asked me what that was and got really hostile ... like I was a criminal or something to even mention it ... so I just dropped it. He has me on neurontin ... it seemed to work the first week but the last two weeks I've seen no improvement at all. I believe you posted that your neurologist recognizes that one could have RSD in the mouth. Maybe someday I'll find a neurologist who will at least listen to me and at least CONSIDER that this may be the problem. With the other neurologist ... I am able to put information on a website which they gave me access to and I asked them to put RSD/Elbow/2003 and RSD/Wrist/2002 but they didn't put it on the website. By the way, after having three blood test work-ups, one brain MRI, numerous Xrays they still have found nothing that explains the pain in my mouth. Gee, surprise surprise! I knew nothing would show up because nothing ever showed up in my mouth when I still had my teeth in the bottom ... and of course nothing is showing up in the tests since I had the teeth pulled either. Anyway, I'm rambling. I probably should just drop the RSD issue but I'd feel better if I could find a doctor who would talk to me about it and not brush me off. I hope I'm putting these messages through correctly. At least my chiari is okay! Ha Ha Mouth pain is enough. Later.

Do NOT drop the RSD issue. Once you have had confirmed RSD in other places, it can go anywhere. I understand your frustration...have you tried seeing a pain management doctor? At least maybe they would be able to focus on the pain issue and maybe be better able to get your pain under control. I don't know what dose of neurontin you are on but it's not unusual for RSD patients to need a pretty high dose of it to get significant relief. Another option is Lyrica...that was the best one for me. There's actually lots of different options to try...some different combinations that are often helpful.

Maybe a pain management doctor would be worth a shot to at least get your pain under control. You should not have to suffer. And in my opinion...any doctor who gets hostile with a patient for even suggesting a possible diagnosis should be shot. I mean seriously...it's one thing if they don't agree and they can give you a list of valid reasons WHY they feel that way...but to just get hostile with you and ignore your concerns is absolutely ridiculous. My experience with neurologists has not been good with my RSD...the ones I have met just don't seem to really believe in things that don't show up on tests and MRIs.

But it's not limited to just neurologists...I have met many uninformed doctors who just didn't know anything about RSD. My issue with the neurologists was just that they claimed they knew all about it and talked down to me but the things they said were just plain wrong about RSD. No point in arguing with them though...just move on to another one because the odds that you will ever change the mind of a doctor like that are slim to none. And it's not your job anyway...you are there to get treatment and if one doc can't help you then you move on to the next.

And if a pain management doc doesn't work out then maybe your family doc would be willing to try some different chronic pain meds that work for RSD. Just keep fighting until you find someone who is willing to help you get this pain under control.

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

Thank you, thank you, thank you again for your encouragement ... what is SO interesting to me on this website is that I get responses and those of us who have had RSD get the same reaction from the health care professionals ... this is really strange BUT ... believe it or not ... I went through something similar with my cat a few years ago! The conditions aren't related at all but NO vet would listen to me ... I even called several universities, animal shelters, veterinarian schools, etc etc and got the brush off. Just for fun, you can see my cat at the following website:

http://www.tffelines.com/tessstory.html

Well I'm getting off the subject ... I saw two pain management doctors 3 weeks ago ... a referral from a neurosurgeon I was sent to ... they put me on the 300mg per day neurontin ... the one anesthesiologist ... spelling? ... was open to my suggestion that it was RSD but he brought the pain management doctor in and told him what I was thinking ... that I have RSD in my lower mouth ... and that doctor sort of put a lid on my suggestion about RSD ... again, I was shut down ... but again thank you for letting me know that this is not uncommon ...

Anyway, the pain management doctors said I didn't have to come back ... huh? So that's when I went to another neurologist and at least he was willing to discuss my MRI and ordered more blood work ...

This new neurosurgeon ... who acts like he doesn't even know what RSD is ... oh please! ... gave me a script for 300 mg 3 times a day and told me I could adjust my dosage up if I felt the 100 mg 3 times a day isn't helping me ...

I did have slight improvement with the 300mg per day but next week I'm going to up it to 600 mg a day ... actually I was happy with the slight improvement at this point ... still have difficulty chewing but not as bad ...

I have one VERY VERY BIG thing in my favor ... my sister ... a physical therapist ... diagnosed me in 2003 with RSD in my elbow ... after I had broken my elbow ... had two surgeries .. she told me back then that she hopes I don't have it appear anywhere else because she has been in conflict with doctors for 35 years about RSD ... they talk to HER as if she is nuts in the head ... she has treated about 5 people with RSD in 35 years ...

What is really scary to me is that these doctors have no idea whatsoever about what a horrible situation you are in when you have an exacerbation of RSD ... when I first broke my arm in 2003 I went to a physical therapist who was trying to force my arm into who knows what position and I was SCREAMING and she kept pushing and was saying that I was getting myself UPSET ... like I was a nut case ... so I called my sister and she, knowing me and how stoic I am ... knew something unusual was going on ... and so she became my physical therapist and it took her months to get my arm moving ... she got it to about 95% movement ... and of course diagnosed the RSD.

Talk to you later! And I definnitely won't give up ... I'll take my meds and go back to the new neurologist in 6 months ... he said he'd see me twice a year ... but will still keep plugging away about this ... I'll just touch base with him twice a year because I will at least have him around to monitor my meds ...

By the way, in the years since I had my cat treated for the tritrichomonas foetus, when I take my cat to the vet once a year, the vet NEVER even mentions the condition that Tess had ... sound familiar?

What I see, as you have, as soon as you challenge them, they get angry and they want nothing to do with you. So on and forward. And at least I have my sister's support and the support of this website! So I am one lucky RSD person!

That's just awful...for doctors to tell you that you don't need to come back again when they have failed to treat your problem...should be criminal. Well...keep going with the neurontin since it is helping...strange that the doctor would tell you to adjust the dose yourself and not monitor your usage more closely...but so long as you don't end up in a situation where you run out of meds and are careful. If you start to experience any weird side effects though you should see a doctor immediately.

Again...what about a general practitioner? That's the doctor I am seeing now who is managing my care and I have gotten SO much better since I started treating with her. Like you I was bounced around a lot and no one seemed to be able to help me (more like they didn't WANT to help me). When my family doctor who had been my doctor since I was born (literally...he was the one who delivered me), when he told me that I might just have to spend the rest of my life in a wheelchair that was when I got angry, put my foot down (figuratively), and decided to take back control. I switched doctors and found someone who is compassionate, listens to what I have to say, always has new ideas, and never acts like there's no hope. I truly feel like there is a partnership between the two of us, and since I started treating with her we have gotten me walking again and consistently improving. She doesn't specialize in RSD (though she is familiar with it and continues to educate herself about it)...but more than anything she is just a compassionate doctor who is really interested in treating her patients. Maybe in your situation it would be good if you could find a general practitioner like this who would be willing to listen to you and try different things to help.

With my eyes I can't tell you how many rsd specialists said go to another eye doctor after 50 apts of them and 10 specialists or blew off the eye pain. This was with pain doctors who deal with rsd at Cleveland Clinic. I understand your frustration with that in regards to your mouth. I finally came to the conclusion and this could be very wrong but that if I could find pain control for the limbs it would in turn help with the eyes.
For me neuros more were about doing a lot of dx testing to rule out other conditions and then I was also dx with PN. They did a little with meds. I am sorry did you say what state you live in? Have you called a teaching university hospital in your area the pain dept/anestesolgy? I ask because that is how I found my best pain doctor better then at Cleveland Clinic and UCLA.
Hang in there and hope you feel better

I really am sorry about the RSD and its pain. I have NP which isn't like that, but hurts none the less. I really think the medical professionls need to get a grip on this disease, acknowledge it, and start to educate themselves about the condition. Just because they became doctors, does not mean they know everything. It is obvious, they don't know enough about this condition.
To brush a person to the side, because they can't admit they don't know, is not what the hippocratic oat says at all. The reason it is called a practice, is because they ARE to PRACTICE and learm themselves. I really wish doctors would listen to their patients more, and stop putting themselves above others. Jusst because they go to medical school and earn a degree, does not make them Gods. I had a huffy doctor, who dismissed me because I said no to a proceedure. If he sat me down and talked it over, I would have been more agreeable. Instead he demanded me to do something I was clearly frightened of. He talked down at me like I were a bug. I could not deal with that kind of attitude. We need not just the skills the doctos have, but their compassion too. We need them to keep educating themselve and researching for our benefit on those conditions, they don't enough about. I am just venting because too many patients get brushed off, or told it is all in their heads. I had a throat problem, it was in my "head" for 5 years, until one doc. finally took a look. It wasn't in my head at all! But a serious condition. So now I am upset, and don't really know where to vent my anger about this. I too was brushed aside, and doctors need to stop doing this and listen. ginnie

I am actually going to the neurologists and pain management doctors in Pittsburgh PA at the University of Pittsburgh Medical Center and these doctors are also on the faculty in the neurology department at the University. But these aren't the doctors who mistreated me ... the first neurologist I went to was independent and wasn't in the UPMC system. The only problem I've had with the neurosurgeon, neurologist and two pain management doctors at UPMC is that I mentioned RSD and they gave me no response when I mentioned it. So my plan is to keep my 6 month appointments with the neurologist I am now seeing and as time goes on ... and I get stabilized on my meds ... if there is such a thing ... I may mention it to him again later on ... I think you have to build up a relationship with the doctors first? Actually, I discussed this with my general practitioner (been going to her for 15 years) and she at least listened to me ... I'm sure, as all of these results come back to the new neurologist, he may be more receptive to me ... since he is now ruling out everything else with all of these tests. Gee, I hope I don't gain weight with the neurontin. I've seen many people mention on the internet that that was a big side effect of neurontin but the listed side effects says that it is only 2% ... so hopefully I'll by pass that side effect. I raised my dosage last night again and so far just feel a little off balance but that happens with each increase for a few days ... my fear is that in years to come I could have a flare up of the RSD in another part of my body and again no one would believe me. I noticed that only people who have had RSD understand how debilitating the pain can be. I am usually very stoic but when I had it in my elbow and I couldn't stand to have anyone touch it and after I had my teeth pulled and the pain was so bad for about a week ... rhose were the two times in my life when I thought ... wow, I am REALLY in trouble here ... but then the pain subsides and the health care professionals are sort of like ... see it wasn't that bad ... but we know that it WAS that bad. But life's good ... and will be better if the pain lessens some more .... looking forward to a day when I can eat something and enjoy it without pain! (What did they finally do to help the pain in your eyes?) Actually, for now I am thinking like you ... I'm not going to worry so much about what my condition is called as I am going to do what I can to get some of this pain relieved.

Thank you for your thoughts. My eyes actually everything in terms of treatment for it from steriods,anti inflammatory,draining,I could go on made me worse. The more eye specialists that touched them the worse they became. Just like my legs which have RSD and now no doctor touches them my legs. Anyhow so I just have been on meds like neurontin etc and no as needed meds anymore. I am very cautious about treatments and like I said no doctor even touches me anymore because of the 5 years of being put in more pain rather then less. I was on neurontin for a long time and worked up to 2700 I did not have the weight issue. Everyone is different though. I try to stay in the moment with side effects of meds because I already live in fear and worry so to add more is not good and also who knows you may benefit. Sometimes it takes time,the right dose and an increase.
I wish I could offer more to you. I agree that unless you deal with this 24/7 pain that is horrid and so much unknown of what is going on and what the day will bring you really can't understand. I always feel though people like doctors or general can be compassionate. I hate being told XYZ to cope or to feel. For myself when I don't understand what someone is going through I don't judge or give them advice. I just listen and give my thoughts of how sorry for their struggle.
Ok sorry for the novel. Stay strong.