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
|
Hi murgir! I’m so happy for you that you have found new docs that you like. That is so important and such a difficult task. I guess what I don’t understand is the PM saying
“it will eventually burn itself out”. I don’t get that at all!! What does he/she mean by that? I’m in my 10th year… I have never heard of such a thing, nor have I experienced that. So I guess I'm still waiting? lol
I take issue with the statement of
”They both said it was odd to have symptoms on the uninjured arm as well as my face!!!” Um… I have symptoms
EVERYWHERE. It’s not odd, it’s called spread. For years I had symptoms only in my original site (right foot/ankle/leg), then it mirrored and then it went everywhere, even my face, my tongue, scalp, etc. So yes, it’s possible and not odd.
Anywho, I’m on 3600mg p/day of Neurontin (max dose), you’ve got a little room to adjust (increase dose) still, so that’s good. I think it’s great that they are looking into Rx creams for you. Gosh it’s all such an ordeal.. isn’t it? You’re new Neuro doc sounds awesome though! Gave you his cell number?! Wow, doctors do that? Lol That’s great Murgir!
