[TMIC] unsubsribe
Re: [TMIC] ANOTHER QUESTION
I take 10mg of prednisone and 175 mg of azathioprine (Immuran) daily. I have sarcoidosis and tm. I have been on azathioprine for 4 years and haven't noticed any difference with my hair or nails. Lynn ( in rainy RI ) - Original Message - From: Patricia Cooley To: 'L T CHERPESKI' Cc: tmic-list@eskimo.com Sent: Sunday, February 22, 2009 11:12 AM Subject: [TMIC] ANOTHER QUESTION LINDA I AM NOT ON STEROIDS AT THIS TIME. I WAS WHEN I WAS IN THE HOSPITAL AND FOR SEVERAL WEEKS AFTER COMING HOME. I, TOO HAVE SJOGRENS. ARE YOU ON A DRUG TO SUPPRESS YOUR IMMUNE SYSTEM? I AM ON AZATHIOPRINE 50 MG A DAY AND HAVE BEEN FOR SEVERAL MONTHS. I HAVE NOTICED THAT SINCE I HAVE BEEN TAKING IT, IT IS AFFECTING MY FINGER NAILS AND HAIR. MY STRONG NAILS HAVE TURNED TO PAPER, AND I HAVE LOST ABOUT HALF OF MY HAIR VOLUME. IS THIS NORMAL? IF SO, I AM GOING TO STOP TAKING IT. I SEE MY DOCTOR TOMORROW AND WILL TALK TO HER ABOUT IT. I GUESS IT IS VANITY, BUT WHAT ELSE DO WE HAVE. I WOULD APPRECIATE ANY INFORMATION YOU MIGHT HAVE. PATTI - WISCONSIN From: L T CHERPESKI [mailto:cherp...@msn.com] Sent: Saturday, February 21, 2009 10:22 PM To: tmic-list@eskimo.com; Regina Rummel Subject: Re: [TMIC] T-2 Lesions Hi Regina, I may have missed some posts, but I need to ask how you're doing? Where is/are your original lesion? And have you had a new episode with new lesions? I have lesions at C4, 5 6 and have had several bad flare ups but I also have Sjogrens so they both can act up. I'm on Imuran and Rituxan infusions to hopefully prevent further damage. Do you have another autoimmune disease also, as this can cause havoc with TM too. Just wondering what conclusion your neurologist came to. I can understand being scared, and I hope you at least have some answers from your doctor. It seems we can deal with what we know, it's the not knowing that scares us. I hope you're feeling better. Linda in Eagle, ID - Original Message - From: Regina Rummel To: tmic-list@eskimo.com Sent: Wednesday, February 11, 2009 3:15 PM Subject: [TMIC] T-2 Lesions Am going over the MRI report of the brain before seeing the neurologist. One notation in particular concerns me and I quote The FLAIR study demonstrates multiple bright T-2 lesions in the deep white tracts of both cerebral hemispheres, etc... Frank explained at one time that 1 lesion is TM, more than 1 is MS. I'm scared. What do you think? Many thanks for your comments. R
Re: [TMIC] Exercise
I have been doing the wii fit since Christmas. My daughter gave it to me. There are fun games and exersices to do at your own pace. I also do eliptical. Good for me because I don't have to lift my feet up. on the tread mill or walking outside I am afraid I will trip and fall. Lynn ( in snowy RI) - Original Message - From: ptpatti200...@aol.com To: tmic-list@eskimo.com Sent: Saturday, January 10, 2009 2:10 PM Subject: [TMIC] Exercise Last week someone asked for some incentive to start excercising and Alton's was the only post that was directed to the list. I would like to know what others do and why. Let's get some positive discussion going. Patti - MIchigan -- Listen to 350+ music, sports, news radio stations FREE while you browse.Start Listening Now!
Re: [TMIC] Key Points re symposium
That is kind of funny because I actually have sacoidosis and that is what caused the tm. It was found by accident on an mri I was having. They noticed enlarged lymphnodes around my lungs and did a biopsy and found sarcoidosis. I have recurrences four times and I am finally on immunotherapy. Hopefully it keeps it away forever. Lynn (in RI, very rainy) - Original Message - From: Regina Rummel To: tmic-list@eskimo.com Sent: Thursday, July 24, 2008 2:47 PM Subject: [TMIC] Key Points re symposium I just read with interest the following Key Points: . All TM patients should be investigated for signs, symptoms and serologic evidence of systemic autoimmune disease (don't we already have an autoimmune disease?) . Sjogren's syndrome, sarcoidosis and lupus should always be considered in a patient with TM . Patients with TM in association with systemic autoimmune disease are more likely to have recurrent neurologic disease and should be considered for chronic immunomodulatory (looked that up on line and don't get it) treatment. I'll let you know what my neurologist's reaction to the above will be Monday when I'm scheduled to see her. If my doctors are aware of the need for these key points, I'm not aware that they are.
Re: [TMIC] age at incident
I was 37. It took about 3 days to become totally paralyzed. Started with back pain and tingling from my feet up. Then the weakness set in. Lynn in RI - Original Message - From: Krissy Z To: Bob and Sue Mattis Cc: TM List Sent: Friday, June 06, 2008 8:50 AM Subject: RE: [TMIC] age at incident Boy can I relate. It was 3 years ago this past May,felt a tingling in my backbone, then legs got all rubbery felt like they were falling asleep. Within 1/2 hour I could not walk or feel my legs. I was 44. ~Krissy~ We are all in this together, by ourselves. - Lily Tomlin ~I'm In pretty Good Shape For the Shape I am in~ --- On Thu, 6/5/08, Bob and Sue Mattis [EMAIL PROTECTED] wrote: From: Bob and Sue Mattis [EMAIL PROTECTED] Subject: RE: [TMIC] age at incident To: [EMAIL PROTECTED], [EMAIL PROTECTED], tmic-list@eskimo.com Date: Thursday, June 5, 2008, 5:33 PM July 28, 2000 is the DAY THAT WILL LIVE IN INFAMY. I was 49. Took 10 minutes to become paralyzed from the waist down (T12), and now one of the “walking wounded”. Sue M. Now 57 -Original Message- From: [EMAIL PROTECTED] [mailto:[EMAIL PROTECTED] Sent: Thursday, June 05, 2008 9:50 AM To: [EMAIL PROTECTED]; tmic-list@eskimo.com Subject: Re: [TMIC] age at incident I was 38. Barbara H. http://barbarah.wordpress.com/ In a message dated 6/5/2008 8:05:43 AM Eastern Daylight Time, [EMAIL PROTECTED] writes: I was 62 when I was nailed eleven years ago. A tiny infarction in the spinal cord at T9-10 dropped me in minutes. Barbara Alma said, I believe, that she was 48. Alton -- Get trade secrets for amazing burgers. Watch Cooking with Tyler Florence on AOL Food.
Re: [TMIC] OT-House
It was amantadine. A medication that helps to lessen flu symptoms if taken right away. I believe it is also given to people who can't get a flu shot to prevent the flu. Lynn (in RI) - Original Message - From: Carol To: tmic-list@eskimo.com Sent: Tuesday, May 20, 2008 7:17 AM Subject: [TMIC] OT-House What was the medication that Amber took that caused her death? Carol in Culver, IN
Re: [TMIC] Unidentified subject!
I also take Lyrica 150mg bid for pain and burning and such. This replaced the tegratol I was taking. I have taken Lyrica for about 11/2 years and find it works much better. Prior to switching I had leg pain all the time. Now only when very tired. Lynn P (t-4-5) in RI - Original Message - From: Janet Dunn To: [EMAIL PROTECTED] ; 'TM' Sent: Monday, March 10, 2008 1:57 AM Subject: RE: [TMIC] Unidentified subject! I have found that Lyrica works very well for that, at 75mg b.i.d. I am up to 150 twice a day now, and that is even better. Janet t4-t5 From: [EMAIL PROTECTED] [mailto:[EMAIL PROTECTED] Sent: March 9, 2008 5:58 PM To: TM Subject: [TMIC] Unidentified subject! Just seeing if anybody knows of a medication that works better than neurotine for the burning. (nerve pain) Thanks Steve Jabs from Pa.
Re: [TMIC] Angry here.
Grace, it doesn't bother me at all if people write in caps or in large letters. What ever they need to do to see the words is fine with me. I have been on this list for about 4 years now and have gotten some good advice. Although I don't speak up often, I am always reading the posts. And I am so happy to have found people who are going through the same things as me. No one understands better than someone who has experienced the same thing. Thanks everyone for being there. Lynn (in RI where it was 8 degrees yesterday and today is a balmy 28) - Original Message - From: L T CHERPESKI To: Grace M. ; TMIC ; Todd Tarno Sent: Saturday, January 05, 2008 12:12 AM Subject: Re: [TMIC] Angry here. Grace, thank you for bringing the subject up. It has never bothered me that people write in caps. There are just so many of us with eye issues, what's the big deal if we make it a little easier for those to read??? In the big scheme of things, I think we all have more things to be concerned about than reading in caps. Supporting each other is far more important in my book. Linda in Eagle,ID - Original Message - From: Todd Tarno To: Grace M. ; TMIC Sent: Friday, January 04, 2008 12:39 PM Subject: Re: [TMIC] Angry here. Grace, you are so right about this. If the people that say that it is too HARD to read all caps, then just don't read and delete it. It is that easy to do. Todd in CC, TX Grace M. [EMAIL PROTECTED] wrote: Hi Guys, You know, there are several of us who need to write in caps, due to severe vision problems. Though I don't use caps, I do use large font. I have to, in order to see what I am writing. Recently, one of the long term members of the TMIC, who is also a personal friend of mine, received an extremely obnoxious email regarding this. (Complete with *language*.) You know, this little group is for the most part---wonderful. It was the very first site that I discovered at the time of my NMO diagnosis, and I have been made to feel at home here. It's like having a virtual *family*. This unnecessary haranguing, of a long standing member, has left a very bad taste in my mouth. Think of it this way: In the big scheme of things, say, ten years from now, is it really going to *matter* if someone had to use caps in order to communicate? I know that I, for one, will certainly not be thinking about something as trivial as that whenever I prepare to meet my Maker. Let's put it to rest, okaye? Grace
Re: [TMIC] This is got to be the coolest story!!!
I just read this story in the Sunday paper this morning. It is truly a heartwarming story. Lynn in RI - Original Message - From: randy rankin To: Peter A. Rumley ; Chris Brudi ; [EMAIL PROTECTED] ; dean kershner ; Trey Darley ; TM Group ; victor rogers ; Joyce Sutton ; ??? ?? ; Debbie Minton ; Mark Yepishin ; sergei yepishin ; Ms Lindsey Lonergan Sent: Saturday, December 22, 2007 1:07 PM Subject: [TMIC] This is got to be the coolest story!!! Pastor's Challenge Shocks Congregation By HELEN O'NEILL, AP Posted: 2007-12-22 07:00:06 CHAGRIN FALLS, Ohio (Dec. 20) - The Rev. Hamilton Coe Throckmorton shivered with anticipation as he gazed at the loot - wads of $50 bills piled high beside boxes of crayons in a Sunday school classroom. Cautiously, he locked the door. Then he started counting. Photo Gallery: What Happened to the Money? Amy Sancetta, AP Reverend Hamilton Throckmorton, right, surprised his congregation in Chagrin Falls, Ohio, when he followed up a sermon by handing out $40,000 in cash. 1 of 9 It was a balmy Friday evening in September. From several floors below faint melodies drifted up - the choir practicing for Sunday service. Throckmorton was oblivious. For hours, perched awkwardly on child-sized wooden stools surrounded by biblical murals and children's drawings, the pastor and a handful of coconspirators concentrated on the count. Forty-thousand dollars. Throckmorton smiled in satisfaction as he stashed the money in a safe. That Sunday, the 52-year-old minister donned his creamy white robes, swept to the pulpit and delivered one of the most extraordinary sermons of his life. First he read from the Gospel of Matthew. And unto one he gave five talents, to another two, and to another one; to every man according to his ability. Then he explained the parable of the talents, which tells of the rich master who entrusts three servants with a sum of money - talents - and instructs them to go forth and do good. The master lavishes praise on the two servants who double their money. But he casts into the wilderness the one so afraid to take a risk that he buries his share. Throckmorton spends up to 20 hours working on his weekly homily, and his clear diction, contemplative message and ringing voice command the church. Gazing down from the pulpit that Sunday, Throckmorton dropped his bombshell. Like the master, he would entrust each adult with a sum of money - in this case, $50. Church members had seven weeks to find ways to double their money, the proceeds to go toward church missions. Live the parable of the talents! Throckmorton exhorted, as assistants handed out hundreds of red envelops stuffed with crisp $50 bills and stunned church members did quick mental calculations, wondering where all the money had come from. There are about 1,700 in the congregation, though not everyone attends each week. The cash, Throckmorton explained, was loaned by several anonymous donors. In her regular pew at the back of the church, where she has listened to sermons for 40 years, 73-year-old Barbara Gates gasped. What kind of kooky nonsense is this, she thought. Sheer madness, sniffed retired accountant Wayne Albers, 85, to his wife, Marnie, who hushed him as he whispered loudly. Why can't the church just collect money the old-fashioned way? In a center pew, Ann Nagy's eyes moistened as she considered her ailing, beloved father, his suffering, and the song she had written to comfort him near death. She nudged her husband Scott. Give me your $50, she whispered. Nagy knew exactly what she would do. Throckmorton wrapped up his two morning services by saying that children would get $10. And he assured the congregation that anyone who didn't feel comfortable could simply return the money. No consignment to outer darkness for those who didn't participate. Throckmorton is warm and engaging and approachable, as comfortable talking about the Cleveland Indians baseball team as he is discussing scripture. At the Federated Church, he is known simply as Hamilton. But as church members spilled into the late summer sunshine that morning to ponder their skills and their souls, there were many who thought: Hamilton is really pushing us this time. There was definitely this tension, this pressure to live up to something, said Hal Maskiell, a 62-year-old retired Navy pilot who spent days trying to figure out how to meet the challenge. Maskiell's passion is flying a four-seater Cessna 172 Skyhawk over the Cuyahoga County hills. He decided to use his $50 to rent air time from Portage County airport and charge $30 for half-hour rides. Church members eagerly signed up. Maskiell was thrilled to get hours of flying time, and he raised $700. His girlfriend, Kathy Marous, 55, was far less confident. What talents do I have, she thought dejectedly. She was tempted to give the
Re: [TMIC] immune system...
Hi Sal, I don't know about you but the doctor's want to suppress my immune system. I take immurane and prednisone. They are both immunosuppressants. Lynn in RI - Original Message - From: sal r To: tm Sent: Wednesday, October 24, 2007 5:49 PM Subject: [TMIC] immune system... do i want to strenghten my immune system now or still keep it low? i am afraid to relapse so iam being cautious __ Do You Yahoo!? Tired of spam? Yahoo! Mail has the best spam protection around http://mail.yahoo.com
Re: [TMIC] Lots to chat about
Hi Patti, I hope this plan works out for you. It is great that your neuro is taking such an interest in your pain. Some of the neuros you hear about don't seem to care very much. I have been taking Lyrica for about a year. It has done pretty well for me. My legs are in much less pain than they were before starting it. I was taking tegratal and switched right away to Lyrica with no problems. I tried cymbalta a few months ago. I found I had to take it in the morning. When I took it at night I was awake most of the night and felt that my heart was racing. When I switched to mornings I had no problems. Unfortunately it caused such dry mouth I couldn't stand it. I think because I already have dry mouth from the bladder meds and this just made it unbearable. Hope this helps. Lynn in RI (cool and sunny) - Original Message - From: [EMAIL PROTECTED] To: tmic-list-at-eskimo.com tmic-list@eskimo.com Sent: Sunday, October 14, 2007 10:09 PM Subject: [TMIC] Lots to chat about I've been checking in to see what's going on too! I had my annual neuro appt last week and have to say he sure is interested in the amount of pain I deal with. Last year my Neuro gave me samples of Lyrica that I never took due to various posts from others and the cost that I will incur if I can't get samples. So this is the route he would like me to take: 1. replace my 2400mg of daily gabapenton with 75mg twice daily 2. increase 60mg Cymbalta to 90mg for 2 weeks, then to 120mg daily 3. increase Baclofen from 10mg every 6 hours to to every 4 to 5 hrs 4. Take 5mg Valium if needed on a rare basis I know this is a lot of changes, however, I'm going to do them one step at a time. I decided to take the plunge and try the Lyrica immediately. Literally! My Neuro assured me again that I could switch from the gabapentin to the Lyrica without any effects so I did it that evening and the change went fine. I had a slight headache for about 1/2 hour for the first 3 doses and that was the only side effect. I just went thru the big weather change from 90 degrees to a 50 degree with rain and tolerated it better than I could have imagined. I'm not out of pain, but I'm not ready to cut my leg off either. I have taken the Baclofen often than at 6 hours twice and it helps to know that I can take them as soon as my back muscles start to spasm. That is a big relief. Now, specifically for those of you who take CymbaltaIs ther a time of day to take it that works better for you? I asked my Neuro if it mattered and his answer was not unless it keeps you awake. I don't have trouble falling asleep, just staying asleep. I wonder if the Cymbalta is the culprit. My Neuro also wrote me an RX for a walker so I can walk distances without the muscle spasms. I paid attention to the questions and answers recently so I think I have that covered. Does anyone have any suggestions or comments on my news? Patti - Michigan
Re: [TMIC] Anyone else?
yes, I take ditropan and detral la and i have terrible dry mouth. Especially at night. I have to have mints and gum available at all times. Lynn - Original Message - From: marieke dufresne [EMAIL PROTECTED] To: [EMAIL PROTECTED]; tmic-list@eskimo.com Sent: Thursday, August 09, 2007 7:55 PM Subject: RE: [TMIC] Anyone else? Hi Natalie, About the dry mouth, what meds are you on? Many of them have this as a side effect, especially Ditropan (for the bladder). Marieke From: natalie mizenko [EMAIL PROTECTED] To: Transverse Myellitis tmic-list@eskimo.com Subject: [TMIC] Anyone else? Date: Thu, 9 Aug 2007 16:53:19 -0700 (PDT) To the group: Has anyone ever experienced a very dry mouth, especially through the night and in the morning. Also, last night my arms were hurting me so badly, and I have not been anywhere but hom. Especially from my elbow to my wrist. I have a knot under the skin on both arms in that area. They were worse last night this morn. but today they were some better, after all I ended up taking a pain pill. This has never occurred so badly. I've been noticing the mouth, but not the arms, til last night. Natalie M. - Fussy? Opinionated? Impossible to please? Perfect. Join Yahoo!'s user panel and lay it on us. _ Windows Live Hotmail is the next generation of MSN Hotmail. It's fast, simple, and safer than ever and best of all - it's still free. Try it today! www.newhotmail.ca?icid=WLHMENCA146
Re: [TMIC] Doctors!
Hi Trudi, I have been cathing since June of 2004. I would really love to not have to cath adn go to the bathroom like a normal person. I am on 2 bladder meds. detral la and ditrapan. Is Enablex a new med that can help with not having to cath? I don't really have accidents much. But have to rush to the bathroom when my bladder is full. I am always afraid I won't make it on time. My family wonders why I don't want to go to very many places but I am always wondering do they have a bathroom close by and is it clean? What a life! Lynn ( in Rhode Island, muggy and warm) - Original Message - From: Trudy To: [EMAIL PROTECTED] Cc: tmic-list@eskimo.com Sent: Thursday, July 05, 2007 3:46 PM Subject: RE: [TMIC] Doctors! Mark, I just went to a urologist because I could not control my bladder! It was awful and wearing diapers ARGH!! I suggest you find a good urologist and have him check you out. There's definitely some new ideas out there and hopefully, I pray one of them will help you out. I cathed for about 5 - 6 months. That was in 2002. But I should have gone to a urologist years ago but I was just so sick and tired of doctors I just wasn't up for one more visit. I regret waiting this long. He has put me on a drug called Enablex and it has worked awesome for me. no more Depends.. Trudy Northern Virginia -- From: [EMAIL PROTECTED] [mailto:[EMAIL PROTECTED] Sent: Thursday, July 05, 2007 9:42 AM To: Tmic-list@eskimo.com Subject: [TMIC] Doctors! I went to my Internist the other day for a non TM related issue. Since I had him cornered I asked him some questions about my TM. He has been seeing me for years and has been involved since my TM. I asked him about my urine retention problem. ( I have been cathing 4 times a day since my TM, Oct. 2006). He told me that usually someone who has been cathing for over 6 months usually does not get back to normal. Is this true? All that I have read and my visit to Johns Hopkins says two years is the target. Am I destined to cath now for the rest of my life? Should he have said that without knowing for sure? I try to think positively but when you doctor of many years tells you that your bladder will probably not come back it is difficult to keep a positive attitude. Thanks for letting me vent. Mark Marlton, NJ ** See what's free at http://www.aol.com.
Re: [TMIC] OT: Doctor won't refill medications.
Yes, I agree. I have on occasion run out of a prescription and the doc's office has filled it as long as I have an appt scheduled. - Original Message - From: Sandra Brassil [EMAIL PROTECTED] To: Kevin Wolfthal [EMAIL PROTECTED]; Tmic-list@eskimo.com Sent: Friday, June 15, 2007 2:08 PM Subject: RE: [TMIC] OT: Doctor won't refill medications. Go ahead and schedule the appt. and they should refill your meds right then and there even if your appointment isn't for another 2 months. Docs offices usually do that so they don't have patients abusing meds, but each patient needs to be treated on an individually case basis regarding their conditions. They shouldn't be mean about it! They can be mean to the patient who is blatantly trying to abuse a narcotic and won't come in for an appointment, but for them not to renew your blood pressure meds is grounds for malpractice! Go ahead and schedule your next appt., get your refills and look for a new doc office. That's what I would do. But then, I am in a big city with lots of doctor options. If they won't refill your scripts until you actually come in, I'm not sure what you can do, except of course threaten to sue. In my experience, all they want to do is get you on the schedule. I have never had a doctor refuse my refills till I actually come in, because it's not like they would actually schedule you that same day, HAHA! Sandy Brassil -Original Message- From: Kevin Wolfthal [mailto:[EMAIL PROTECTED] Sent: Friday, June 15, 2007 3:47 AM To: Tmic-list@eskimo.com Subject: [TMIC] OT: Doctor won't refill medications. My pharmacist called me the other day to tell me that my PCP won't refill one of my meds until I make an appointment. I called the doctor, and the person I spoke to said it has been too long since my last appontment. I explained that I have mobility problems. I asked if they would refill my BP medication, she got angry and said NO! I asked if it wasn't dangerous to just stop a Blood Pressure medication, and she said it is but I still need to make an appointment. She was rude and hostile. I agree that I am overdue for an appointment, but I DON'T agree with these strong arm tactics. They could at least give me a smaller refill of my BP med until I can get in there. Doctors make me sick! Anyone else have this experience? Kevin
Re: [TMIC] ot
Rob, My doctor keeps saying the hot weather is bad for me, but I haven't really noticed a big difference during hot weather. Lynn in Rhode Island - Original Message - From: Robert Pall [EMAIL PROTECTED] To: [EMAIL PROTECTED]; tmic-list@eskimo.com Sent: Friday, June 08, 2007 10:29 AM Subject: RE: [TMIC] ot Rick, Interesting that you stated that hot weather is bad for us TM'rs. I personally have not been able to pinpoint the weather as being something that effects me...the only possible exception is that very humid weather can make me feel worse. I would be interested if the group commented on the effect that weather has had on themin the meantime I hope everyone has a great summer! Rob in Sunny New Jersey -Original Message- From: [EMAIL PROTECTED] [mailto:[EMAIL PROTECTED] Sent: Friday, June 08, 2007 10:24 AM To: tmic-list@eskimo.com Subject: [TMIC] ot Good morning tmiclist. Heres wishing everyone good health. Hoping that June weather makes everyone aware of how hot weather takes its toll on us. Be careful those that have to work in it. Rick
Re: [TMIC] ot
I take ditropan xl and the dr told me to stay out of the sun. That it will affect me more than usual. Lynn - Original Message - From: Tracey L. Black [EMAIL PROTECTED] To: Robert Pall [EMAIL PROTECTED]; [EMAIL PROTECTED]; tmic-list@eskimo.com Sent: Friday, June 08, 2007 10:47 AM Subject: RE: [TMIC] ot I have been told that if anyone is on Ditropan XL, they should be very careful in hot weather so that they don't dehydrate. Has anyone else heard that? Tracey L. Black Certified Insurance Service Representative Hockley O'Donnell Insurance Agency Phone - 717-334-6741, x 29 Fax - 717-334-3414 Thank you for providing information to us. Please beware that no coverage is bound and no change to your insurance program is confirmed until verified by a licensed agent during regular business hours. If you do not hear from us within 1 business day, please re-contact us in case your information has not been retained. -Original Message- From: Robert Pall [mailto:[EMAIL PROTECTED] Sent: Friday, June 08, 2007 11:29 AM To: [EMAIL PROTECTED]; tmic-list@eskimo.com Subject: RE: [TMIC] ot Rick, Interesting that you stated that hot weather is bad for us TM'rs. I personally have not been able to pinpoint the weather as being something that effects me...the only possible exception is that very humid weather can make me feel worse. I would be interested if the group commented on the effect that weather has had on themin the meantime I hope everyone has a great summer! Rob in Sunny New Jersey -Original Message- From: [EMAIL PROTECTED] [mailto:[EMAIL PROTECTED] Sent: Friday, June 08, 2007 10:24 AM To: tmic-list@eskimo.com Subject: [TMIC] ot Good morning tmiclist. Heres wishing everyone good health. Hoping that June weather makes everyone aware of how hot weather takes its toll on us. Be careful those that have to work in it. Rick
Re: [TMIC] Working With a Disability in California
Hi Everyone, I am on ssdi and I have gone back to work. The government really worked with me to help get back to work. I got a ticket to work in the mail with my information about ssdi. This is kind of a safe way to go back to work. When you call the number on the ticket they give you names of people who will help you get back to work. I met with my career counselor to discuss what I would be able to do. I can't do what I used to (I was a medical assistant) because there is just too much walking around, but I am working in a doctor's office doing recpetionist/insurance verification. He helped me put together a resume and help find places that where looking for help. He also explain exactly how it works with the ssdi. I get my whole disability check while I am still working for 1 year regardless of how much money I make. During that year I can stop working at any time if I have to and there is no stop in my checks or new application. After that year I only get a check if my income is below a certain amount (I think it is $640) which I will definetly go over. For five years I can go back on disability if I am incapacitated by the same illness or anything caused by it without having to reapply. This is kind of a cushion to help people go back to work. I started working in september and so far I am still working. I am so happy to be doing something productive and getting out of the house. Lynn (in RI) - Original Message - From: [EMAIL PROTECTED] To: [EMAIL PROTECTED] ; tmic-list@eskimo.com Sent: Monday, May 28, 2007 11:39 PM Subject: Re: [TMIC] Working With a Disability in California Hi Todd, If I were to get strong enough to know that I were able to make the transition back to work, it would be great. I certainly would be able to make more money than I do on disability and would feel much more productive. It's really difficult when you know though that you would be making a huge mistake if you are jeopardizing your finances if you fail. To know that your income could seize from your disability and I am not sure of how it would work with SSDI. Not sure about the posibility of having to reapply and get re-approved. I certainly hope that there aren't any people in our group that are making this mistake and getting themselves in this kind of trouble. My eight year anniversary with TM is 6/1/07, so I don't think I'm going to be getting strong enough to get back to work now. Hugs to all, Barbara A in sunny and warm Auburn, CA -- See what's free at AOL.com.
Re: [TMIC] SSDI
When I got approved for ssdi I received a lum sum also with no explanation. That showed up afterwards. They will eventually send you all the information. No they do not automatically take taxes out. You must got the the wbsite ssa.gov and fill out a form to have them remove taxes. Also you must be disabled for a certain amount of time (I don't remember how long exactly, maybe 6 or 12 months) before you can collect disablility. Lynn in Rhode Island - Original Message - From: Candis Kalley To: tmic-list ; transversemyelitissupport Sent: Thursday, May 17, 2007 5:59 PM Subject: [TMIC] SSDI I had a big surprise today when I went online to check my bank funds. Social Security had deposited money into my account. However, I have not received any paperwork for explaination. I have been disabled since 01/06 and as of my last SS statement in 7/05, disability payments should have been $1500 a month. However, what was deposited into my account was only for 10 months while I have been disabled for 16 months. My question, does SS withhold taxes on the amount paid? Thank you for all you help. Candis Kalley [EMAIL PROTECTED] EarthLink Revolves Around You.
Re: [TMIC] allodynia - Lynn
Kevin, It is so true and I am glad I am not the only one. People think I am over reacting to a small pain. But I can't help it. It does make me catch my breath and stop and wait for the spasms to pass. Lynn - Original Message - From: Kevin Wolfthal [EMAIL PROTECTED] To: Lynn Pouliot [EMAIL PROTECTED]; Tmic-list@eskimo.com Sent: Thursday, May 10, 2007 10:33 PM Subject: Re: [TMIC] allodynia - Lynn Lynn, This is one of the oddest things I've noticed with my own symptoms. My feet are numb to the touch, I can't tell what direction my big toe is pointing when the neurologist moves it up or down, yet, if I stub my toe it is like I put my foot in a light socket, and I have to catch my breath. In fact just tonight I was walking in bare feet and must have stepped on some tiny raised object that made me limp. Numbness and hypersensitivity at the same time. Weird. Kevin Lynn Pouliot wrote: I have had tm since 1992. I have had flare ups but do get somewhat better each time. But I can't say I am in lots of pain. And don't notice lots of increase in pain. Now that i am on the lyrica the pain in my legs is not too bad. I do get feelings of cold or burning sometimes but it is not unbearable. Also I find it strange that if I stub my toe or bump into something my legs overeact. I get spasms in my leg and it is like I am really injured but it only last a couple of minutes. I know if i have bumped my toe or foot to hold on to something for a few minutes. Lynn in RI - Original Message - From: [EMAIL PROTECTED] To: [EMAIL PROTECTED]; tmic-list@eskimo.com Sent: Monday, May 07, 2007 9:42 AM Subject: Re: [TMIC] allodynia I'm also interested in Heather's question: how many people w/TM more than 3 or 4 years have gotten worse as time goes by? Perhaps the question should be: Are there any of us who have NOT had an increase in symptoms?? F
Re: [TMIC] Lyrica
I am taking lyrica. I have been on it about 1 year and it has helped with pain in my legs. My legs were aching and hurting all the time before lyrica. Now they still hurt on accasion but not all the time. Lynn in RI - Original Message - From: Gunny [EMAIL PROTECTED] To: Tmic-list@eskimo.com Sent: Monday, May 07, 2007 9:17 AM Subject: [TMIC] Lyrica Is anybody on Lyrica and if so, could you tell me the benefits. I was turned down for it because it's not designed to aid in Pain caused by TM. It's supposed to be for pain caused by Diabetes which to me would be diabetic Neuropathy, Not Peripheral. SAnyhoo, I ned to file an appeal, so any info would be helpful. gunny PeoplePC Online A better way to Internet http://www.peoplepc.com
Re: [TMIC] allodynia
I have had tm since 1992. I have had flare ups but do get somewhat better each time. But I can't say I am in lots of pain. And don't notice lots of increase in pain. Now that i am on the lyrica the pain in my legs is not too bad. I do get feelings of cold or burning sometimes but it is not unbearable. Also I find it strange that if I stub my toe or bump into something my legs overeact. I get spasms in my leg and it is like I am really injured but it only last a couple of minutes. I know if i have bumped my toe or foot to hold on to something for a few minutes. Lynn in RI - Original Message - From: [EMAIL PROTECTED] To: [EMAIL PROTECTED]; tmic-list@eskimo.com Sent: Monday, May 07, 2007 9:42 AM Subject: Re: [TMIC] allodynia I'm also interested in Heather's question: how many people w/TM more than 3 or 4 years have gotten worse as time goes by? Perhaps the question should be: Are there any of us who have NOT had an increase in symptoms?? F
Re: Re: [TMIC] straight cath
Kristy, I am presently taking detrol la 4mg for my bladder. If I don't take it then I have so many bladder spasms sometimes i have leakage and terrible urges to go to the bathroom. When I was first diagnosed with tm in 1992 I had an mri about 2 months after my symptoms. When I had another flrare up in 1996 I had an mri right away. They did show a lesion at the t4-5 level. Presently it is still there. I have had a few flare up and each time I am paralyzed from the lesion down. I have been able to work my way back to walking each time but have more and more permanent scarring each time and more permanent weakness. No I had no fever just terrible back pain the first 3 days and then increasing weakness. Lynn (in RI where it is finally spring) - Original Message - From: [EMAIL PROTECTED] To: tmic-list@eskimo.com Sent: Thursday, April 19, 2007 4:42 PM Subject: Re: Re: [TMIC] straight cath Lynn, I had problems with my bladder for years but now am doing much better, Some days (at first) it would be very bad and then when I would cath for a while it seemed to get better. So the answer to your question is yes I have experienced the same thing. Also about your MRI CSF , did they do those tests within the first four days? That can also make a difference. You should go to the TMA site and read the updates on some of the artices, Especially the one called Transverse Myelitis: Pathogenisis, Diagnosis and Treatment. Did you run a fever when you first got sick? Kristy Matheson From: Lynn Pouliot [EMAIL PROTECTED] Date: 2007/04/18 Wed PM 04:54:31 EDT To: tmic-list@eskimo.com Subject: Re: [TMIC] straight cath Mark, I cath 5 or 6 or sometimes more depending on how much I drink. I am hoping to be able to go off all my bladder meds and urinate on my own. I have been cathing for about 3 years. I have cut down on my bladder meds and I am now only taking 1. I can urinate on my own a little. But I don't empty my bladder all the way. Hope this helps you. Lynn, in RI (cold and rainy for 4 days now) - Original Message - From: [EMAIL PROTECTED] To: tmic-list@eskimo.com Sent: Monday, April 16, 2007 2:22 PM Subject: [TMIC] straight cath Hello everyone, I have not logged in recently but I read as much as possible. But I do have a question that I hope someone out there has an answer...one I want to hear! But first let me recap I was first diagnosed with TM after being in Temple hospital for over 6 weeks back in Sept of 2006. I recently visited Johns Hopkins in MD and was told by Dr. Greenburg that he was not sure that I had TM. I might have an AVM. Arterial Vascular Malformation. Temple hospital thought that as well but could not prove it so they diagnosed me with TM. Dr. Greenburg wants to do another angiogram in June to see if Temple missed the AVM. I was told by Dr. Greenburg that there are two ways to determine TM. One is with an MRI and the other is from the fluid from a spinal tap. Both were done at Temple Hospital and both did not show TM. I am numb from the waist down to my toes and must straight cath at least 4 times a day. Now to my question. Has anyone had problems urinating and then had the bladder come back and was able to urinate on their own again? Lately I have been able to urinate a little on my own but it is psoriatic. Is this a good sign or just a fluke? Thanks for letting me vent. Mark Marlton, NJ ** See what's free at http://www.aol.com.
Re: [TMIC] straight cath
Mark, I cath 5 or 6 or sometimes more depending on how much I drink. I am hoping to be able to go off all my bladder meds and urinate on my own. I have been cathing for about 3 years. I have cut down on my bladder meds and I am now only taking 1. I can urinate on my own a little. But I don't empty my bladder all the way. Hope this helps you. Lynn, in RI (cold and rainy for 4 days now) - Original Message - From: [EMAIL PROTECTED] To: tmic-list@eskimo.com Sent: Monday, April 16, 2007 2:22 PM Subject: [TMIC] straight cath Hello everyone, I have not logged in recently but I read as much as possible. But I do have a question that I hope someone out there has an answer...one I want to hear! But first let me recap I was first diagnosed with TM after being in Temple hospital for over 6 weeks back in Sept of 2006. I recently visited Johns Hopkins in MD and was told by Dr. Greenburg that he was not sure that I had TM. I might have an AVM. Arterial Vascular Malformation. Temple hospital thought that as well but could not prove it so they diagnosed me with TM. Dr. Greenburg wants to do another angiogram in June to see if Temple missed the AVM. I was told by Dr. Greenburg that there are two ways to determine TM. One is with an MRI and the other is from the fluid from a spinal tap. Both were done at Temple Hospital and both did not show TM. I am numb from the waist down to my toes and must straight cath at least 4 times a day. Now to my question. Has anyone had problems urinating and then had the bladder come back and was able to urinate on their own again? Lately I have been able to urinate a little on my own but it is psoriatic. Is this a good sign or just a fluke? Thanks for letting me vent. Mark Marlton, NJ ** See what's free at http://www.aol.com.
Re: [TMIC] News And Results!
Hi Cora, That sounds great! But what is it that you have had done? I guess I missed those emails. Right now I have to straight cath to go pee. I don't have that much leakage but I am on 2 bladder meds also. Lynn, in RI where it is a beautiful spring Saturday - Original Message - From: [EMAIL PROTECTED] To: tmic-list@eskimo.com Sent: Friday, March 23, 2007 8:03 PM Subject: [TMIC] News And Results! We switched the leads from the right lead to the left lead this morning. I can scarcely believe the difference! I've only had enough leaking today to change pads ONCE! We all know that this TM/blasted syndrome-opathy affects us differently from person to person-- but differently on different sides as well. I've got a feeling they put me on the side that they thought was less likely to give results first. I admit that I'd have been severely bummed if I had good results then bad. We'll see how nights go.. I usually just put on a gob of pads and overnight diaper and try to sleep through. I kept increasing the signal, as I became used to it , on side one, up to about a 5 (halfway) Then I had some fever, dizzyness, didn't feel at all good, and pretty much got over that, then when changing to the left lead, I thought the tolerance that had built up might have some effect, but no! I started at about .5 and haven't gone above 1 today, and can still feel it. I'm pretty sure that its just about finding the setting that works; on the side that works. I did ask, and was told they would use the side that did the best. And...I've had normal bowel movements since about the 4th day. I mean, I used to have to use digital stimulation to achieve a bowel movement, and considered it to be under control, but these are without stimulation (except from the stimulator, of course)! Wow! This is what I was hoping for. They did say that us TMers have less success if our bladders retain rather than leak. If it works for me, it can work for others. Cora
[TMIC] Fw: Mastectomy Hospital Bill in Congress
I don't usually write in to the list but read all the emails. This was sent to me by a reliable source. If you click on the link you will see it is legitimate and important to all women. Please sign the petition! Thanks, Lynn P, in RI Click on url at the bottom to sign petition. Sent: Thursday, February 08, 2007 7:42 AM Subject: Mastectomy Hospital Bill in Congress Mastectomy Hospital Bill in Congress A mastectomy is when a woman's breast is removed in order to remove cancerous breast cells/tissue. If you know anyone who has had a mastectomy, you may know that there is a lot of discomfort and pain afterwards. Insurance companies are trying to make mastectomies an outpatient procedure. Let's give women the chance to recover properly in the hospital for 2 days after surgery. Mastectomy Bill in Congress It takes 2 seconds to do this and is very important... please take the time and do it really quick! Breast Cancer Hospitalization Bill - Important legislation for all women. Please send this to everyone in your address book. If there was ever a time when our voices and choices should be heard, this is one of those times. If you're receiving this, it's because I think you will take the 30 seconds to go to vote on this issue and send it on to others you know who will do the same. There's a bill called the Breast Cancer Patient Protection Act which will require insurance companies to cover a minimum 48-hour hospital stay for patients undergoing a mastectomy. It's about eliminating the drive-through mastectomy where women are forced to go home just a few hours after surgery y, against the wishes of their doctor, still groggy from anesthesia and sometimes with drainage tubes still attached. Lifetime Television has put this bill on their web page with a pe tition drive to show your support. Last year over half the House signed on. PLEASE!! Sign the petition by clicking on the web site below. You need not give more than your name and zip code number. This takes about 2 seconds. PLEASE PASS THIS ON to your friends and family, and on behalf of all women, THANKS. http://www.lifetimetv.com/health/breast_mastectomy_pledge.html
Re: [TMIC] Be Careful When Exercising
I have been on coricosteroids for a long time. Right now I am on 10mg every day. That is a fairly low dose. But I have been on much higher doses over the years and did a year of monthly iv steroids which is 1000mg. My doctor has me go for a bone density test every year and so far everything is ok. Lynn in RI - Original Message - From: [EMAIL PROTECTED] To: [EMAIL PROTECTED] ; TMIC-LIST@eskimo.com Sent: Sunday, October 29, 2006 12:57 AM Subject: Re: [TMIC] Be Careful When Exercising Hi Jude,, I just asked my Primary about a bone density test during one of my regular appointments, and he referred me to that department for an appointment. I have an HMO, so that's the procedure for this. I am not sure if you need to have your primary request it or not, but that's where I started. Come to think of it, it's been about 5 yrs, so it's probably time to get it done again, or most likely, overdue. Hugs to you, Barbara A
Re: [TMIC]banding
I get the banding around my chest and middle. It just feels really tight, I guess banding is a good word because it does feel like a tight band around my middle. But I only get it when I am tired. Like at the end of the day. Lynn in RI rainy again - Original Message - From: Jill Z To: Krissy Z ; TM List Sent: Monday, September 04, 2006 7:48 PM Subject: Re: [TMIC]banding I used to get the banding across the top and arch of my leftfoot as if I had an ankle brace on. I also would getaround on my left wrist.Krissy Z [EMAIL PROTECTED] wrote: My banding is usually my right leg, and some days better than others, the tightness around my ankle and knee...sometimes my calf, never really painful tho just tight like someone is gripping it tighlyor there is some weight around my ankleKrissy ZoddaTri State Support Group Leader(603)589-1894http://www.geocities.com/tmladyk/home.html~I'm In pretty Good Shape For the Shape I am in~ All-new Yahoo! Mail - Fire up a more powerful email and get things done faster.
Re: [TMIC] Fw: CAUSES OF TM --CHECK OUT THE RED HIGHLITES
Yes, I have been given 1000mg prednisone IV for 5 days each time I have had a flare up. onece nin 1997, again in 2004, and again in 2005. I don't think it made me feel worse though. I do question whether it helped or not each time it took months to recover and after this last one I have not fully recovered. - Original Message - From: Butcher, Bernie [SFS] To: tmic-list@eskimo.com Sent: Friday, September 01, 2006 11:07 AM Subject: RE: [TMIC] Fw: CAUSES OF TM --CHECK OUT THE RED HIGHLITES Anyone ever get a massive dose of prednesone? This week I was given 3 days of IV steroids, 1,000mg/day, each morning 8/28, 29, 30. Now I feel awful Stiff,like, worse than before. ? BERNARD BUTCHER From: [EMAIL PROTECTED] [mailto:[EMAIL PROTECTED] Sent: Thursday, August 31, 2006 12:29 PMTo: [EMAIL PROTECTED]; [EMAIL PROTECTED]Cc: tmic-list@eskimo.comSubject: Re: [TMIC] Fw: CAUSES OF TM --CHECK OUT THE RED HIGHLITES ?? didn't we already know this information? -Original Message-From: [EMAIL PROTECTED]To: [EMAIL PROTECTED]Cc: tmic-list@eskimo.comSent: Thu, 31 Aug 2006 10:42 AMSubject: [TMIC] Fw: CAUSES OF TM --CHECK OUT THE RED HIGHLITES Myelitis And Acute Transverse Myelitis Myelitis, or inflammation of the spinal cord, can result from several diseases. Poliomyelitis affects the cord's gray matter and produces motor dysfunction; leukomyelitis affects only the white matter and produces sensory dysfunction. These types of myelitis can attack any level of the spinal cord, causing partial destruction or scattered lesions. Acute transverse myelitis, which affects the entire thickness of the spinal cord, produces both motor and sensory dysfunctions. This form of myelitis, which has a rapid onset, is the most devastating.The prognosis depends on the severity of cord damage and prevention of complications. If spinal cord necrosis occurs, the prognosis for complete recovery is poor. Even without necrosis, residual neurologic deficits usually persist after recovery. Patients who develop spastic reflexes early in the course of the illness are more likely to recover than those who don't. Causes Acute transverse myelitis has a variety of causes. It often follows acute infectious diseases, such as measles or pneumonia (the inflammation occurs after the infection has subsided), and primary infections of the spinal cord itself, such as syphilis or acute disseminated encephalomyelitis. Acute transverse myelitis can accompany demyelinating diseases, such as acute multiple sclerosis, and inflammatory and necrotizing disorders of the spinal cord, such as hematomyelia. Certain toxic agents (carbon monoxide, lead, and arsenic) can cause a type of myelitis in which acute inflammation (followed by hemorrhage and possible necrosis) destroys the entire circumference (myelin, axis cylinders, and neurons) of the spinal cord. Other forms of myelitis may result from poliovirus, herpes zoster, herpesvirus B, or rabies virus; disorders that cause meningeal inflammation, such as syphilis, abscesses and other suppurative conditions, and tuberculosis; smallpox or polio vaccination; parasitic and fungal infections; and chronic adhesive arachnoiditis. Signs and symptoms In acute transverse myelitis, onset is rapid, with motor and sensory dysfunctions below the level of spinal cord damage appearing in 1 to 2 days. Patients with acute transverse myelitis develop flaccid paralysis of the legs (sometimes beginning in just one leg) with loss of sensory and sphincter functions. Such sensory loss may follow pain in the legs or trunk. Reflexes disappear in the early stages but may reappear later. The extent of damage depends on which level of the spinal cord is affected; transverse myelitis rarely involves the arms. If spinal cord damage is severe, it may cause shock (hypotension and hypothermia). Diagnosis A doctor will suspect transverse myelitis in any patient with a rapid onset of paralysis. Medical history, physical examination, brain and spinal cord scans, myelogram, spinal tap, and blood tests are used to rule out other neurological causes of symptoms, such as a tumor. If none of these tests suggest a cause for the symptoms, the patient is presumed to have transverse myelitis. Blood tests may be performed to rule out various disorders such as systemic lupus erythematosus, HIV infection, and vitamin B12 deficiency. In some patients with transverse myelitis, the cerebrospinal fluid that bathes the spinal cord and brain contains more protein than usual and an increased number of leukocytes (white blood cells), indicating possible infection. A spinal tap may be performed to obtain fluid to study these factors. Treatment No effective treatment exists for acute transverse myelitis.
Re: [TMIC] Crazy Question
Hi Jill, I think those feeling are very common among people with tm. I was taking tegratol for those burning, tingling feelings. Now I am taking lyrica. I have never had any tingling in my head though. my leseion is at t4-5. It is a very scary thing, waiting to see if it will ever come back. Hopefully for you this is a one shot deal. Lynn P in RI - Original Message - From: Jill Z To: tmic-list@eskimo.com Sent: Monday, August 07, 2006 11:15 PM Subject: [TMIC] Crazy Question Although I feel I'm VERY fortunate to be able to walk unassisted, I feel like I have "little flare-ups" from time to time with my left leg and right foot going numb and even feeling like a raw/burning feeling. Is that normal? I also feel like a tingly feeling in my head sometimes? I don't know if it's just driving me crazy and I need an ativan or is it just the TM reminding me that it's there lurking and ready to come back or even turn into MS. This has been for about a week or two now. I was diagnosed in Dec. 2005 and have made great strides since then thank God. Jill 36, Chicago T10-11
Re: [TMIC] baclofen 30 MG A DAY
I was taking baclofen 20mg twie a day. I recently went down to 10mg twice a day. Now I notice my calf are very tight when I wake up in the morning. But so far the spasms have not increased. Lynn P in RI - Original Message - From: [EMAIL PROTECTED] To: [EMAIL PROTECTED] ; tmic-list@eskimo.com Sent: Saturday, August 05, 2006 5:29 PM Subject: Re: [TMIC] baclofen 30 MG A DAY I did not have real bad spasms but wastaking Valium every time I got spasms and it worked.My new neurologist prescribed Dantrolene for stiffness. Firstone 25 mg. per day, now I am up to three per day. It hasn't helped the stiffness but I have only had spasms a couple of times in the almost month I have been on Dantrolene. I hope you find something that helps. Gary in Michigan - Original Message - From: [EMAIL PROTECTED] To: tmic-list@eskimo.com Sent: Friday, August 04, 2006 4:07 PM Subject: [TMIC] baclofen 30 MG A DAY HELP NEED SOMETHING FOR SPAZMS.this makes them WORSE what are you guys taking ?? THANKS SOO MUCH
[TMIC] anugust birthday
My birthday is 8/30/60, Lynn Pouliot
Re: [TMIC] Neurontin Side effects Neurontin Medications - Neurontin Online
I Have been taking Lyrica for about 1 month. I definately noticed that it increased my dry mouth. I already had dry mouth from the bladder meds that I am taking, but now my mouth is like the sahara desert. Sometimes it is so dry I can't swallow and now my sinuses are dried out too. I started out taking 75mg twice a day and stopping my tegratol. right away I noticed my legs were not hurting anymore. After a couple of weeks I started to get terrrible numbness in my right leg, traveling up to my middle with that tight banding, then freezing cold down my left side. Now they have increased the lyrica to 150mg twice a day. still feeling woozy from the increase in meds but it is starting to wear off. The dry mouth is so bad I am wondering if I should go off of the lyrica and back to good old tegratol. Any suggestions? Lynn in RI - Original Message - From: Mary W [EMAIL PROTECTED] To: tmic-list@eskimo.com Sent: Thursday, May 25, 2006 8:16 PM Subject: [TMIC] Neurontin Side effects Neurontin Medications - Neurontin Online According to this website, eye problems can occur with neurontin...usually at the start of taking the medication and then gradually wearing off. Mary W Grass Valley Ca http://www.neurontinonline.com/neurontin_side_effects.html
Re: [TMIC] help with questions
I know that with my diagnosis of TM the mri showed a clear lesion in the t4-5 area of the spinal cord. My first mri was in 1993. Since then I have had 5 flare ups and now have a diagnosis of recurrent TM. Each mri shows that same lesion and inflammation in the spinal cord. Although there are people given a diagnosis of TM when nothing shows up on the mri. This is just my experience with mri's and I have now had more than I can count. Lynn in RI - Original Message - From: rdbfeb To: tmic-list@eskimo.com Sent: Wednesday, May 17, 2006 6:52 PM Subject: [TMIC] help with questions I have been subscribed to the site for a while now and have searched archive records for assistance to my problem. February 1999 I woke up one Monday morning with a strange feeling from my waistdown. Over the next three weeks i steadily got worse and had to use a cane for walking. At the time I had Brain MRI's with and without contrast, evoked potentials and spinal tap. The only test that showed any problems was the spinal tap. The Nuro's exact words were The abnormalities seen in your spinal fluid are consistant with those I see in MS patients, so lets wait and see. He also said he was beginning to wonder if it was all in my head. In the mean time lets call it Transverse Myletitis. For the next 7 years the only problem I had was weekness in left leg and numbness in feet. During this episode I took no medicine of any Kind. I did not go back to that Nuro. December 2 of 2005 my left side went numb(still is) and my left leg got worse. I saw my primary care physician. He put me on Lyrica and recommended I see a Nuro. My old one was no longer seeing patients, it would be 4 months before I could get an appointment with a new one. Three weeks later I had fallen 3 times. This time primary ordered brain MRI. This one showed white matter suspious of MS. March I get to see a Nurologist. He orders two more MRI's. These of Thorasic and neck level. I take another fall. I see the Nurologist. He says new MRI's look could and he's leaning toward leaving the Diagnosis as Transverse Myletitis. I said I thought TM was single occurance. He said he thought it was just a flair up. I asked why new areas involved? He said we could call it clinical MS but lets do another brain MRI with and without contrast and see if any change since January. So, Exactly what , in most of your cases, have show up on your MRI's to constitute the diagnosis of TM. I know what lesions are so is that what is expected. If so, and I have not had any why TM. Should I force the MS diagnosis ? Should I just wait and see again? So many questions, so few answers..
Re: [TMIC] Hi Everyone
Hi Everyone, I too get up feeling like I can do anything. I always start some sort of project ( cleaning house, clearing out a closet, decorating) and soon realize I "bit off more than I can chew" I tire so easily. Hence, I always have half of things completed. And a bigger mess than I sarted with. Oh well, I am starting to learn how much I can do before I get tired. Resting usually restores most of my energy, but not all. Lynn P. in Frigid RI - Original Message - From: Heather Pieter To: [EMAIL PROTECTED] ; [EMAIL PROTECTED] ; tmic-list@eskimo.com Sent: Tuesday, December 13, 2005 1:08 PM Subject: Re: [TMIC] Hi Everyone Hi there, I have not met Harriet but want to thank her for her ideas and upbeat feelings as well. She hit the nail on the head when she said that we can tend to feel our body image failing with clunky shoes, heavy limbs and in my case as one of the walking wounded - feeling like an invalid (when I'm not really - in my mind anyway). I hope to get my driver licence back soon when I am approved by the Driver Fitness and Monitoring people to use a left foot accelorator. Then I am hoping to go and try some water therapy at a lovely warm water swimming pool here in Calgary. I gave up the exercise classes a while back. Just got tired of the trek there and back in the Handibus etc. janh, You mention overdoing things at this time of year. This is my 3rd Christmas now with TM. I was hit by it Sept 2003. This year we do not have friends living with us to help decorate (as we did in 2003), and we don't have my husband's daughter and granddaughter living with us to help out (as we did in 2004). So overdoing it in the 'getting ready for the season' is not hard. I am finding that when I first get up in the morning after a good nights rest I think that I can do 'anything' and do it quickly. Of course once I start doing things I quickly become more tired (in my body from waist down where I am affected from T8 - T10) and my limbs become s heavy that I have to take frequent rests. I am going to write a note in my 2006 calendar to start preparing for the season a whole lot earlier (like at the beginning of November) next year. Sorry to write so long a 'note'. I am just musing this morning but should get in gear as my hubby and I have a little more Christmas shopping to do today and decorate the tree that has been standing in the living-room 'bare' since Saturday. It is one of the fake trees with the lights already attached but looks kind of sad with no ornaments or garland. Bye now, Heather in Calgary - Original Message - From: [EMAIL PROTECTED] To: [EMAIL PROTECTED] ; tmic-list@eskimo.com Sent: Tuesday, December 13, 2005 8:32 AM Subject: Re: [TMIC] Hi Everyone Harriet,It's so good to hear from you.and everything your shared was a positiveand an idea for some of us to pursue.It's great to hear you so upbeat!!Thanks for writing and keep us updated..this time of the year we need positive strokes as we're all so busy, and we can get down! so easily when we overdo.janh Stiolwater OK No virus found in this incoming message.Checked by AVG Free Edition.Version: 7.1.371 / Virus Database: 267.13.13/199 - Release Date: 12/13/2005
