Thanks to everyone for the great response re banding. I hope my GP will be prepared to let me trial maybe Baclofen/Lyrica in the hopes of getting some relief and will let you know if I have any success.
Iris UK On Thu, Jan 17, 2013 at 3:42 AM, Dalton Garis <malugss...@gmail.com> wrote: > Lyrica has been a wonder drug for me. > > Dg > > Dalton Garis > Flushing, Queens > New York, USA > Mobile: 718-838-0437 > > From: Pat Voorheis <pjv1...@chartermi.net> > Date: Wednesday, 16 January 2013 10:11 PM > To: "heyjude48...@aol.com" <heyjude48...@aol.com> > Cc: "tmic-list@eskimo.com" <tmic-list@eskimo.com> > Subject: Re: [TMIC] need for a neuroloist > Resent-From: <tmic-list@eskimo.com> > Resent-Date: Wed, 16 Jan 2013 19:11:35 -0800 > > Yes, the torso banding is usually control. > > > Sent from my iPad > > On Jan 16, 2013, at 9:38 PM, heyjude48...@aol.com wrote: > > So is your banding gone? > > In a message dated 1/16/2013 8:41:50 P.M. Eastern Standard Time, > pjv1...@chartermi.net writes: > > 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 >> >> = >> >> > = > >
