I know that Baclofen helps with my banding. I take 10mg 3 x daily. My neuro wrote the rx for 4x in case I want to take an extra one. I also take 100mg Lyrica 3x daily. An RN on this site told me Lyrica also helps with banding so I guess I'm getting double the help.
Patti V - Michigan Sent from my iPad On Jan 16, 2013, at 2:03 PM, Susan Kleinz <skle...@cox.net> wrote: > I was diagnosed with TM two years ago. > 20 years prior - probable MS > I think keeping a neurologist is paramount. New things happen every day! My > family doctor, gynecologist, orthopod had never heard (or believe) in TM! So > frustrating > I have constant banding, and would love to know if anyone has had any luck > with anything. (I do have a brace I wear to handle housework (such as > vacuuming), and it helps. > Susan > On Jan 16, 2013, at 11:57 AM, I Whiddett wrote: > >> On the subject of the need for a neurologist, I was discharged by mine after >> two years on the grounds that there was nothing else to be done to help me. >> This leaves me in care of my GP practice where there is now no doctor with >> any knowledge of TM. Their only function for me is to renew my prescription >> for Amitriptyline, as prescribed by the neurologist 3 1/2 years ago at the >> onset of TM. I'm really pleased to see the group is still here as I have >> been wanting to ask if anyone is aware of a drug that helps specifically >> with "banding" present 24/7 and intensifying in cold/hot weather. I'm >> unable to go out in the present cold weather and I don't think Amitriptyline >> helps at all, not even with sleeping any more. I'd appreciate any advice. >> Iris >> >> On Wednesday, January 16, 2013, wrote: >>> We are talking about the need for a neurologist. I just saw mine >>> yesterday. For my pain he recommended a pain pump. I'm going to have a >>> trial pump put in to see if it will work for me. If it does, they will >>> implant a permanent one in my body, next to the spine with a catheter >>> leading out to my abdomen where the pump can be refilled periodically. The >>> medication last about six months before it must be refilled. >>> >>> I have so much pain because I have a broken leg that is not healing. It's >>> been almost 1 & 1/2 years. The pain is intense on top of my TM pain. I'm >>> taking strong medication to just get by. >>> >>> Guess I 'talked' your ears off. Will go for now. >>> >>> Judy in Michigan >>> >>> In a message dated 1/16/2013 8:16:47 A.M. Eastern Standard Time, >>> pjv1...@chartermi.net writes: >>> The description you gave sounds familiar. I didn't and could not have gone >>> back to my banking job. My biggest anxiety in the early days of TM was my >>> inability to think. It took four months before i could read And longer to >>> comprehend. I got stuck or stumbled on words when trying to talk and >>> literally sounded drunk. Had a hard time between left and right. Couldn't >>> follow directions. Got lost in buildings, because I always turned the wrong >>> way. Did things backwards. I had to have a note for everything. >>> >>> I worked hard to overcome those issues. I sat for hours reading tmic and >>> the TM forum. Typed with two fingers to write my posts, tried for days to >>> make a flow-chart, and even had a nine year old come after school two days >>> a week to play kids games and build items with Legos. >>> >>> I felt like the steroids fried my brain. I'm much, much better and thank >>> God everyday for the improvements. >>> >>> Patti V - Michigan >>> >>> >>> Sent from my iPad >>> >>> On Jan 15, 2013, at 10:44 PM, Dalton Garis <malugss...@gmail.com> wrote: >>> >>>> Cognitive problems, did you say??? >>>> >>>> Please elaborate. I was a high-flying associate professor economist in an >>>> engineering school when getting TM in 2010. Then I began to experience >>>> the unthinkable—literally. I could go into class and do the entire >>>> lecture from my head. But after TM I would get to a point in the delivery >>>> when it was time to pull out some element from my head and, it wouldn't be >>>> there! It had always been there, but now I couldn't recall it. It was >>>> shocking and humiliating to say the least. It finally did me in. >>>> >>>> Please tell me about these cognitive problems you mentioned. >>>> >>>> DG >>>> >>>> From: <pjv1...@chartermi.net> >>>> Date: Tuesday, 15 January 2013 9:53 PM >>>> To: tmic <tmic-list@eskimo.com> >>>> Subject: [TMIC] need for a neuroloist >>>> Resent-From: <tmic-list@eskimo.com> >>>> Resent-Date: Tue, 15 Jan 2013 18:53:27 -0800 >>>> >>>> I had the same neurologist for first five years of TM. I had several >>>> MRI's and he was satisfied that I didn't have MS (TM left me with >>>> cognitive problems). I had been on the same medications for two years, my >>>> primary said he would renew my rx when needed, and I didn't feel the need >>>> to contnue seeing my neuro (140 mile round trip). >>>> >>>> That worked for another two years until my primary moved and his >>>> replacement refused to write my rx for the Lyrica and Baclofen. She >>>> referred me to her neuro buddy, but I made an appointment with another >>>> neuro whom I had heard was "the best" from one of his MS patients. >>>> >>>> The new Neuro agreed with my med regime, agreed that there was no need for >>>> MRI's, and agreed that I didn't need to see him oftener than annually >>>> unless I had neurological changes. The new neuro also understood my >>>> frustraton with a primary who would not renew my Lyrica and Baclofen rx. >>>> >>>> I never went back to that primary and have since seen a Physicians >>>> Assistant for my regular illnesses. >>>> >>>> I didn't think I needed a neurologist. However, I realize that as long as >>>> I need Baclofen and Lyrica and it is wise to have one available. >>>> >>>> Patti V. - Michigan >>> = >
