James, I am really sorry you are having such a tough time. How long have you had TM? Have you thought of going to a pain-management doctor? My life turned around when I did. One of my other doctors recommended it. I used to have a lot of sensation in my legs, like they were turned on electrically all the time. After a couple of years, I could feel some improvement. Right now I am battling leg spasms – mostly at nite. Am changing times and amounts of baclofen to stop it. Another idea might be to turn to your pharmacist – they are really up on all new meds and what they do. Explain your situation and see what happens. Couldn’t hurt. Good luck, Janice
From: James Berg Sent: Tuesday, April 26, 2011 1:28 PM To: john snodgrass Cc: transverse myelitis Subject: Re: [TMIC] revisiting an old issue I am having a bad day--the thrumming is at its worst and the banding has gotten wider and tighter--to the point I couldn't eat dinner or breakfast this morning. Baclofen does nothing. It took four glasses of red wine and two alergy pills to get me to sleep. Being in the chair now is making the banding pain worse. any suggestions? On Tue, Apr 26, 2011 at 1:11 AM, john snodgrass <[email protected]> wrote: I remember hearing the concern of thrumming in the legs. You know,,like the sound that a power transformer makes except it's a feeling,a buzzing or even sometimes like energy going up and down your leg or legs. I gert this a lot and when it is real bad it is from the top of my head to the bottom of my feet. sometimes it even feels like something poking at the bottom of my feet from the inside trying to get out. perhaps i could harness it and drive a car with it! I am taking the maximum dosage of baclofen and neurontin and was wondering if anyone ever ran across something to either slow this part down or even stop it. sometimes it will last all day and can go from irritating to depressing. most of the time when this does stop that's when the burning begins. this on top of the wast banding and pain can drive me to thinking thoughts that are not normal for me. thoughts like,,perhaps i should find some marijuana and smoke it or perhaps i should drink enough to pass out or maybe i should punch someone and they will knock me out! my Doc's know about it but have no answer. losing insurance on may 5th.
