Judy, so glad you are going in this direction for your leg. I have a good feeling about it! Janice
From: [email protected] Sent: Wednesday, January 16, 2013 5:55 PM To: [email protected] ; [email protected] Subject: Re: [TMIC] need for a neuroloist Dear Regina, I forgot to answer your question. I have decided to keep my leg and try to get it to heal by using electrical stimulation and maybe the oxygen tank and I am having a Matrix pain pump put it. Waiting for them to call to set up the date and time. First they will put a temporary pump in to see if it works. If it does, I will have the surgery to have it implanted. It is so good to hear from you again. I am so glad to be back here. Love and hugs, Judy In a message dated 1/16/2013 5:54:09 P.M. Eastern Standard Time, [email protected] writes: Hi Judy, Are you still planning on going throught with the surgery on January 19th? I'll be thinking of you hoping all goes well. Keep us posted. Regarding the question of pain. I remember Frank recommending phinobarbitol. Had made a note of it but can't find it. Perhaps Frank could give you the details if he reads this. He said that he takes it and that it works. Worth a try. Take care dear friend. --- On Wed, 1/16/13, [email protected] <[email protected]> wrote: From: [email protected] <[email protected]> Subject: Re: [TMIC] need for a neuroloist To: [email protected], [email protected] Date: Wednesday, January 16, 2013, 1:59 PM I too have constant banding around my torso. Have had it ever since 2002 when I contracted TM. Have been on many different drugs over the years, but nothing has really worked. I was on so many drugs that my heart and lungs were being affected, so now I simply live with the banding and take my pain medicine. I haven't mentioned it to my Dr. in years. Maybe I'll bring it up the next time I see her. Judy in Michigan In a message dated 1/16/2013 3:12:17 P.M. Eastern Standard Time, [email protected] writes: My doctor has prescribed Zanaflex, which is a muscle relaxant. Check with your doctor, but this might help. - Roger in Kennewick, WA -------------------------------------------------------------------- From: Susan Kleinz <[email protected]> To: I Whiddett <[email protected]> Cc: "[email protected]" <[email protected]>; "[email protected]" <[email protected]>; "[email protected]" <[email protected]>; "[email protected]" <[email protected]>; "[email protected]" <[email protected]>; "[email protected]" <[email protected]>; "[email protected]" <[email protected]>; "[email protected]" <[email protected]>; "[email protected]" <[email protected]>; "[email protected]" <[email protected]>; "[email protected]" <[email protected]>; "[email protected]" <[email protected]> Sent: Wednesday, January 16, 2013 11:03 AM Subject: Re: [TMIC] need for a neuroloist 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, [email protected] 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 <[email protected]> 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: <[email protected]> Date: Tuesday, 15 January 2013 9:53 PM To: tmic <[email protected]> Subject: [TMIC] need for a neuroloist Resent-From: <[email protected]> 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 =
