Quote:
Originally Posted by murgir
Neurologist said to bring him a list of any meds that others have had success with. He said that some times we have to go through several different ones to find one that works for us. Was impressed by that. The recent increase of Neurontin is helping for now but has been increased to 1800mg a day. I have increased it 3 times in 3 months. He also made copies of both articles I have found recently. Gave me his cell number and said if I needed him to call him. Wow supper guy. The pain management doctor also very nice said that it will eventually burn itself out. I have read otherwise somewhere, maybe by one of y'all. He said since I am doing good most days, he is not changing or adding any meds. He did tell me there is a time released Neurontin that you only take once a day at supper. You can also add a regular Neurontin on the days when the symptoms are worse. They both said it was odd to have symptoms on the uninjured arm as well as my face!!! The pain specialist said he could prescribe a combined cream of Neurontin and other things that a local pharmacy makes for the burning pain but it works better on the arms and legs. He said they would mail it to me since I live a hour from it. You have to have a script for it. He gave me samples to try. Any input is very welcomed. Any meds that work for you would be a great help so I can pass it on to my neurologist. Thank you all
|
Sounds like you have a Neurologist, good for you!
Re; the time release Neurontin is called Gralise. I was on it but preferred to be able to take more in the evening so that I wasn't so foggy during the day. They both worked the same for me but, since I take additional medications with similar brain foggy side effects it is nice to be able to vary the timing of at least one med that causes that so not to compound the problem.
The cream he is talking about is a specially formulated compound cream usually with many medications in it - including ketamine, lidocaine, baclofen etc., it does help with sensitivity but I haven't had much luck with it for the burning pain.. but hey, we are all different so I hope it works for you!!
Regarding the PM that said it would "burn itself out" .. personally I would ask him for his number and then politely say you will call him when it does or hell freezes over whichever comes first. Or better yet, ask him if he's confident enough in saying that to let one of his colleagues cut one of his main sensory nerves 3/4 of the way through it to test out his statement. Then give him your number and have him call you when it "burns itself out". Can you tell someone said this to me along my road with CRPS II?? Not only has mine not burnt itself out but it has gotten progressively worse fast. If someone said that to me today - I would likely slap them silly.
My advice with that PM is find another one quickly, he won't likely do you any good in the long run. Clearly he doesn't understand CRPS 1 or 2.
Glad you have a great Neuro!!