Jeff wrote:Makes perfect since but arent there other things that cause RLS besides low dopamine levels in the brain?
Well, they're really not completely sure WHAT causes RLS, but in the brains that they have autopsied, dopamine is always involved.
There also seems to be very few, if any, people who do not respond to dopaminergic drugs. People may get sick on them or can't take them for various reasons, but they seem to always help.
Per being diagnosed....sometimes docs make mistakes and you get an incorrect diagnosis. Not saying this is definitively what happened, but that it could have.
So....that puts you in a tough place. I'm not definitively saying that it's not RLS, but it's something that should be explored because if it's not RLS, something else is going on and it could be potentially a problem if not identified and treated.
Jeff, I'm really thinking that there are multiple things going on and that the RLS is the wrong focus. You mentioned creepy crawlies in your first post along with pain. When you take the Sinemet, does the creepy crawly feeling go away?
So far, if I'm following correctly, you've tried Flexeril, low dose of Tramadol extended release, Requip, Sinemet, and Neurontin and none have helped. Now, it's possible that the doses simply weren't high enough. If it were me, I'd want to make sure I tried one of the dopamine drugs at a high enough dose to determine yes or no - does it help.
I'd also want to closely think about every symptom. Write them down. And see which of the drugs seems to help what symptom - none, some, different ones for different drugs? That would help the doctor quite a bit, I imagine.
I am so sorry you are going through this. It's very frustrating, especially when others don't seem to understand why this is bothering you so much and you haven't a lot of choices in terms of doctors. If it makes you feel any better, I have a huge city full of doctors and can't find one that knows what he or she is doing