[TMIC] Chiropractic treatment
Hey group! I don't usually ask about opinions dealing with myself, but more often about concerns of other folks, but this time it's about me. Has anyone in our group ever used chiropractic treatment after TM? I have had TM for 10 years and are able to walk either unaided or with a cane or walker depending on the circumstances. Over the last few years, because of my gait issues, and the way I waddle, I have developed hip pain on a daily basis. I have gotten approval from my neuro to see a chiropractor but there is still that little nagging voice in my head that tells me not to mess with my spine. I'd appreciate any thoughts you have on this. Thanks folks! Sue
Re: [TMIC] Is anybody there? I;m trying to find someone who remembers meeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeee
Jude, ARE YOU KIDDING ME!!! .?? . . . YOU HAVE BEEN ONE OF THE LONG STANDING MEMBERS OF OUR TM INTERNET COMMUNITY! WE'VE BEEN WONDERING HOW YOU ARE!! IT'S GREAT TO SEE YOU ON HERE AGAIN!! WE MISSED YOU! Sue - Original Message - From: Jude Hoops To: tmic-list@eskimo.com Sent: Tuesday, December 21, 2010 04:44 AM Subject: [TMIC] Is anybody there? I;m trying to find someone who remembers meee
[TMIC] QUESTION ON LARNETON
Hello all I've had a contact from another PA Tm'er who has asked me to look into a medication called LARNETON. (www.larneton.com http://www.larneton.com/ ). I'm not certain where he first heard about it, but he has asked me to inquire to our list if anyone else has heard of it. I have checked out the website, and as a lot of things go, it appears to be one of those too good to be true herbal medications that promise a cure. From what I can gather from the website, it must be from the New Zealand area. Has anyone heard of this before? I'm thinking if it's more localized to New Zealand or Australia and perhaps Errol White might have some insight. I'll be awaiting your replies. Thanks! Sue
[TMIC] LARNETON - PART 2
Hello all.again. I've done a little more research on Larneton that I asked about in my other e-mail. Seems this Gordon's Herbal Research Center thing is a hoax. Apparently they also have other sites where they promise that the same formula that cures everything from Guillian-Barre to Polymyalgia Rheumatica, to Burning Mouth Disease (what ever THAT is!)and on...and onand on.. Something should be done to stop scammers from doing this crap. Sue
RE: [TMIC] Re: [Transverse Myelitis Support] surgery after TM
I don't know what the original post was as well, but. . . . I have had 2 major abdominal surgeries in the last four years, and have had TM for 9 years. I don't think my recovery would have been any different if I didn't have TM. I did require a lot of pain meds because of the severity of the surgeries, and was limited on what I was allowed to do for quite some time, so in that respect I feel I lost some of my mobility because of lack of exercise in that time period. However, when able to get back to normal activity, I was able to regain what I had lost. I am one of the walking wounded as we say, and I was able to get back to what normal is for me within a few months (walking with a cane). Sue -Original Message- From: Barbara Alma [mailto:balmat...@aol.com] Sent: Wednesday, January 20, 2010 9:56 PM To: jrush...@columbiaenergyllc.com; transversemyelitissupp...@yahoogroups.com; tmic-list@eskimo.com Subject: Re: [TMIC] Re: [Transverse Myelitis Support] surgery after TM I didn't see the original post, so not sure what you were asking. I also had surgery, it was on my back for a lypoma. I was not put under, but would be given enough to be very relaxed. They said they weren't trying to put me under, but I was more than happy to sleep through it since it was quite large and I really didn't want to hear any talking during the surgery. I hadn't had much sleep for a few days, so I fell asleep.It was so nice to get a good nap. I went home and continued it, lol. Hugs, Barbara A in Auburn CA -Original Message- From: jrushton jrush...@columbiaenergyllc.com To: transversemyelitissupp...@yahoogroups.com; tmic tmic-list@eskimo.com Sent: Wed, Jan 20, 2010 3:42 pm Subject: [TMIC] Re: [Transverse Myelitis Support] surgery after TM I did, Laurie, and it went just fine and I had no problems afterwards, either. I actually didn't even need the IV pain med following the surgery since I have not feeling in the area where they did the surgery...Jeanne
RE: [TMIC] Age
I was 49 when I got it July 28, 2000 Sue Pennsylvania -Original Message- From: Janice Nichols [mailto:jan...@centurytel.net] Sent: Friday, December 11, 2009 12:35 AM To: tmic-list@eskimo.com Subject: [TMIC] Age Hey! I have a request. I was talking to my neuro and he was curious to know the ages that my website friends were when they were hit with TM.Do you all mind sending me that info - even if you only read messages and don't usually respond?I would like to get as many ages to him as possible. I told him you all were a pretty cooperative group! Thanks guys Janice, Missouri
RE: [TMIC] Looking for TMr's from N.E. Ohio area
Sue Mattis - Harborcreek, PA (near Erie) Co-chair of the PA support group with Pam Hoge We are always open to getting together with folks from other states as well. In fact the first time I ever met with anyone with TM was back in 2001 in Youngstown, Ohio with some of the OHIO group. The borders of a state don't dictate what TM'ers we can hang with. We'd love to get together with anyone! :-) Sue -Original Message- From: kevin weilacher [mailto:hwyfli...@yahoo.com] Sent: Saturday, September 12, 2009 5:00 PM To: tmic-list@eskimo.com Subject: [TMIC] Looking for TMr's from N.E. Ohio area Who here on the list is from what is classified as the N.E. Ohio area. I have the 2007-2008 TMA directory and I'm sure that there have been some changes or updates. I'm looking at trying to start a NE Ohio TMA support group. I know there is an Ohio support group but I believe the closest area is Columbus. Honestly, that is a bit too far for me to drive for support meeting get togethers. I know Gunny is on here and I know about Ella in Elyriacan anyone help me out..? I think we could benefit from something like thisespecially in light of the recent posting from Gilly...where she said that she just recently met another TM'r. How many others are out there that would like to meet another TM'r and you might have someone in your back yard so to speak that you don't know about. Thanks, Kevin
RE: [TMIC] able to move slightly
UNBELIEVEABLE!!! THIS IS TOTALLY AWESOME TO HEAR!!! -Original Message- From: Jim Lubin [mailto:jlu...@eskimo.com] Sent: Monday, August 24, 2009 4:26 PM To: tmic-list@eskimo.com Subject: [TMIC] able to move slightly The past two weeks I started feeling a tingling in my right lower back. When I feel this I am able to move my left thumb! It's been 20 yrs, 4 mos since I was paralyzed from the neck down due to TM. When I recline the tingling stops and I can not move my thumb no matter how much I try to. To show that I was actually moving and not just having involuntary twitching, I had my nurse tell me when to move and I moved it. Here is the video http://www.youtube.com/watch?v=Tw__9ZDv_hU Jim Lubin jlu...@eskimo.com http://makoa.org/jim disAbility Resources: http://www.makoa.org http://www.makoa.org/
[TMIC] VICTORY JUNCTION - part 2
Hello all! I have to say that Debbie Capen pretty much covered what was truly an awesome experience for those of us who were blessed to be at Victory Junction with the TM families. We were able to watch these kids take part in camping activities that they might never be able to their entire lives. There were so many first times for all of them. Huge smiles on their faces when getting to ride a horse, or doing the bullseye dance when they hit the center of the target in archery. Playing baseball on a diamond that they could use their wheelchairs onand wheel around the bases with them. Using an air gun to take the lug nuts off the wheels of a racecar, or taking a hot air balloon ride. The making uggy faces when their lips touched a fish before they threw it back in the lake. Being able to take part in a skit and be on a real stage in a real theatre in front of a real audience. All of these experiences as well as many others were shared with other kids who have the same issues that they do. What a great opportunity also for the siblings to meet other siblings and for the parents to be able to talk to the doctors (who brought their families as well) about their concerns. The officers of the TMA should be so proud that they were able to arrange this camp again. They are in incredible group of people who are dedicated to making things happen for the TM community. And in case you don't all know it, Sandy Siegel is the most caring, kind hearted and soft spoken man you could ever meet. We are a fortunate community indeed.
FW: [TMIC] Artist w TM in New York times
Speaking as one WITH TM, and not as a caregiver, I find it much easier to understand where this man might have been coming from. It is very possible that the evening might have literally taken every ounce of his inner strength to get through and was truly done. Nothing more to give. If there is anyone on the list who suffers with TM who has not felt the exhaustion that drains literally everything out of you..at least just once.then you are lucky. Perhaps it took everything this man had just to do what he had to that night. We all push ourselves to one degree or another. We HAVE to. That's how we get through each and every day with TM. Perhaps his push was much harder that day than ours. Let's give him the benefit of the doubt and not be so critical of this man. -Original Message- From: bobby jim [mailto:elbobber...@earthlink.net] Sent: Saturday, June 27, 2009 9:11 PM To: T Kanon; Akua Cc: tmic-list@eskimo.com Subject: Re: [TMIC] Artist w TM in New York times Inasmuch as am an artist myself and also caregiver to my wife with MS I can understand Shonibare's 'rudeness' but ne'rda'less I find it a bit harsh. With or without a disability, as an artist he is at the mercies of a very fickle public. Maybe he just doesn't give a hoot. Bobberino From: T Kanon mailto:sseco...@yahoo.com To: Akua mailto:a...@artfarm.com Cc: tmic-list@eskimo.com Sent: Friday, June 26, 2009 4:58 PM Subject: Re: [TMIC] Artist w TM in New York times Last night was the opening of this artist's exhibit at the Brooklyn Museum and I attended. Two people helped him walk down the aisle and onto the stage. It looked as if his hands were affected too. After the lecture I saw him in his wheelchair being taken to a limo. I went over to him and asked if indeed he had TM. He didn't even look at me and just said I'm done. A guard said he is very tired. I know he was tired but he was also very rude!!! Tobe Brooklyn NY --- On Wed, 6/24/09, Akua a...@artfarm.com wrote: From: Akua a...@artfarm.com Subject: [TMIC] Artist w TM in New York times To: tmic-list@eskimo.com Date: Wednesday, June 24, 2009, 9:42 PM very interesting article on interesting artist who had...transverse myelitis. and was paralyzed. but no longer is.. regained ability to walk after three years in a wheelchair http://www.nytimes.com/2009/06/21/arts/design/21sont.html?_r=1 http://www.nytimes.com/2009/06/21/arts/design/21sont.html?_r=1scp=1sq =shonibarest=cse scp=1sq=shonibarest=cse --
[TMIC] Neil Wendy Ross (Canada)
Hello group, Can anyone tell me if Neil and Wendy Ross (Cole's parents) have a new e-mail address? I've been trying to e-mail them about the Victory Junction Gang Camp, and I haven't gotten any response to my e-mails. Maybe my info is outdated. Thanks all. Sue
RE: [TMIC] stem cell
Amanda, Each person has to decide for themselves if it is the right thing for them. I have no idea what your limitations are because of TM, but I am one of the walking-wounded as they say, and even though my limitations are minor compared to most TM patients, I can tell you without a doubt that if I had the opportunity and the means ($30,000) you'd see me on the next flight to Panama. Sue TM since 7/28/2000 -Original Message- From: Amanda Diskey [mailto:adis...@yahoo.com] Sent: Tuesday, March 24, 2009 2:13 PM To: tmic-list@eskimo.com Subject: [TMIC] stem cell I found a hospital in Panama City, Panama affiliated with Johns Hopkins, and they say they can treat me with stem cells. The lady I spoke with says they have treated one person with TM and got good results. The cost is $30,000. What do you all think?
FW: [TMIC] stem cell - ADDITIONAL REMARKS
HELLO ALL To make myself more clear, I should have said, if the whole thing is legitimate (Part of the Johns Hopkins Project), then I'd be booking my flight to Panama. Sue -Original Message- From: Bob and Sue Mattis [mailto:bobsue6...@adelphia.net] Sent: Tuesday, March 24, 2009 2:43 PM To: 'Amanda Diskey'; 'tmic-list@eskimo.com' Subject: RE: [TMIC] stem cell Amanda, Each person has to decide for themselves if it is the right thing for them. I have no idea what your limitations are because of TM, but I am one of the walking-wounded as they say, and even though my limitations are minor compared to most TM patients, I can tell you without a doubt that if I had the opportunity and the means ($30,000) you'd see me on the next flight to Panama. Sue TM since 7/28/2000 -Original Message- From: Amanda Diskey [mailto:adis...@yahoo.com] Sent: Tuesday, March 24, 2009 2:13 PM To: tmic-list@eskimo.com Subject: [TMIC] stem cell I found a hospital in Panama City, Panama affiliated with Johns Hopkins, and they say they can treat me with stem cells. The lady I spoke with says they have treated one person with TM and got good results. The cost is $30,000. What do you all think?
RE: [TMIC] Re: humble pie
It is great to hear from both of you. Has anyone had any word from Errol in Australia??? Sue -Original Message- From: [EMAIL PROTECTED] [mailto:[EMAIL PROTECTED] Sent: Sunday, October 26, 2008 8:12 PM To: [EMAIL PROTECTED]; tmic-list@eskimo.com Subject: Re: [TMIC] Re: humble pie Gilly and Saroj, it is so good to hear from both of you!! Barbara H. http://barbarah.wordpress.com/ http://barbarah.wordpress.com/ In a message dated 10/26/2008 7:15:55 P.M. Eastern Daylight Time, [EMAIL PROTECTED] writes: SAROJ!! It's so very very good to hear from you. I've been so terribly worried about you as have many of your old friends on the list. The last time we heard from you, you were going to New Zealand and you were stopping by to see me on the way. You were also having a lot of difficulties with your property and many legal matters. I do hope those are all behind you. I'm so sorry about your depression but it's also very understandable, having TM makes you depressed without all of the other issues you had to deal with. Please write to me and tell me in detail what's been happening to you. My email address is [EMAIL PROTECTED] Gilly Whose is confirming she is Gillian from Australia and who survives only by having a sense of humour and tolerance. - Original Message - From: Saroj mailto:[EMAIL PROTECTED] Kumari To: Gillian Clark mailto:[EMAIL PROTECTED] Sent: Monday, October 27, 2008 8:39 AM Subject: Re: [TMIC] Re: humble pie Hello Gilly, I am as if waking up from a long sleep after four years . I was very depressed but have started making slow recovery . So resubscribed to the list. There seem to be lots of changes in the membership list. Pam and Heyjude seem to be passing through some difficult times. believe , I am writing to Gillian in Australia with a sense of humour. Please confirm. Saroj On 10/27/08, Gillian Clark [EMAIL PROTECTED] wrote: Having TM (or any disability) definitely changes values. I'm sure that you were always capable of being humble though Phran3quee, you probably just didn't need to be. Gilly Who always approves of Phran3ques posts. _ Play online games for FREE at Games.com! All of your favorites, no registration required and great graphics - check http://pr.atwola.com/promoclk/10075x1211202682x1200689022/aol?redir =%0d%0ahttp://www.games.com?ncid=emlcntusgame0001 it out!
RE: [TMIC] Fwd: Hello again
Hey Jude!...(someone should make a song from those words!...ha ha) WHAT WAS MISSED WAS YOU! So glad you're home.and back with us! Sue -Original Message- From: [EMAIL PROTECTED] [mailto:[EMAIL PROTECTED] Sent: Thursday, September 25, 2008 8:01 AM To: tmic-list@eskimo.com Subject: [TMIC] Fwd: Hello again .
RE: [TMIC] Fwd: JUDE!!!!!!!!!!!!!!!!!!!!!!!!!!!!!
Hello all Does anyone have the exact name and address of the facility that Jude is in? Thanks! Sue -Original Message- From: [EMAIL PROTECTED] [mailto:[EMAIL PROTECTED] Sent: Thursday, August 14, 2008 4:43 PM To: tmic-list@eskimo.com Subject: [TMIC] Fwd: JUDE! In a message dated 8/14/2008 4:18:46 PM Eastern Daylight Time, MontzMagic writes: SHE IS NOT FEELING GOOD TODAY. THE GOOD NEWS IS HER TESTS FOR THE INFECTION IN HER COLON WAS NEGATIVE.THE ANTIBIOTICS ARE WORKING. YOU CAN TELL THE LIST JUDE IS IN HYSTORIA MANOR NURSING HOME, ROOM 66. TIAD PAM!!! _ Looking for a car that's sporty, fun and fits in your budget? Read http://autos.aol.com/cars-Volkswagen-Jetta-2009/expert-review?ncid=aola ut000307 reviews on AOL Autos.
RE: [TMIC] age at incident
I guess I should have clarified a little better. I had been experiencing back pain for 3 or 4 days, but attributed it to working from sun-up to sun-down at our town's festival. Apparently there was more going on than I realized. From the point of excruciating pain in lower back to paralysis was 10 minutes. What led up to the onset might have been days in coming. Sue -Original Message- From: Alton Ryder [mailto:[EMAIL PROTECTED] Sent: Thursday, June 05, 2008 6:14 PM To: Bob and Sue Mattis Cc: TM List Subject: Re: [TMIC] age at incident Took 10 minutes to become paralyzed from the waist down (T12) Strictly speaking, neither of us have TM. Myelitis is an inflammation of the myelin; I don't believe any infection can have such a sudden onset. Moreover, my spinal fluid was clear of white blood cells that would have been marshaled to fight an inflammation. I, perhaps we, had an infarction of a branch artery within the cord. Alton
RE: [TMIC] age at incident
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/ 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 http://food.aol.com/tyler-florence?video=4?NCID=aolfod000302 Cooking with Tyler Florence on AOL Food.
FW: [TMIC] Ringing in ears
-Original Message- From: Bob and Sue Mattis [mailto:[EMAIL PROTECTED] Sent: Friday, January 04, 2008 3:39 PM To: '[EMAIL PROTECTED]'; 'tmic-list-at-eskimo.com' Subject: RE: [TMIC] Ringing in ears Hi Patti! I too have ringing in my ears. I have had TM since 7-28-00, and I can't remember a time before TM that I had that problem. I've always been curious to wonder if having the pressure on the spinal cord, or perhaps having spinal taps had something to do with it. I too read the Dr. Gott article, and at the time, the Rite Aide Pharmacy and the Walmart Pharmacy were sold out of the Lipoflavinoid. I haven't been back to try to get any, but I'd like to try it. I don't notice the ringing much during the day, mostly because of all the other noise, but when I'm sitting reading at night, or before I go to bed and it's quiet, it's the most noticible. Sue - Harborcreek, PA -Original Message- From: [EMAIL PROTECTED] [mailto:[EMAIL PROTECTED] Sent: Thursday, January 03, 2008 11:41 PM To: tmic-list-at-eskimo.com Subject: [TMIC] Ringing in ears I recently read in Dr Gott's newspaper column of the use of lipo flavanoid to reduce or stop tinnitus and wondered if anyone has used this supplement. I am experiencing constant noise in my ears that reminds me of the crickets and other insect noises on a warm summer night. One ear is louder than the other and the pitch is different too. It is $25 for a box of 100 with a suggested dose of 1 or 2 tablets 3 x daily. Has anyone used it? Patti - Michigan
RE: [TMIC] I am a TMIC addict...lol
Sal, The thing that worked best for me was water therapy. It improved balance, stability and stamina. Not everyone has that type of therapy available in their area, but if you do, it would be well worth looking into. Keep in mind, that every person's TM is unique to them and not everyone responds the same to each treatment, but I believe there have been several others here on the list who have said they've achieved considerable improvement with this form of therapy.. GOOD LUCK! Sue -Original Message- From: sal r [mailto:[EMAIL PROTECTED] Sent: Monday, October 22, 2007 6:39 PM To: tm Subject: [TMIC] I am a TMIC addict...lol i have so many questions and also knowledge i would like to spread but dont know where to start...well i have another question that i need help with...i am in a wheelchair right now...and relearning how to walk...its been about 2 and half yrs since the last time i walked. i am strength training my body right now. i was walking a little bit with a walker but decided to cut back until my body is stronger and could tolerate it much better..i am walking in parallel bars right now. my coordination is off and my balance also. does anybody know the best way to go about this? __ Do You Yahoo!? Tired of spam? Yahoo! Mail has the best spam protection around http://mail.yahoo.com
RE: [TMIC] Swollen Hands
Deana, My TM did not affect my hands, however, I would say that eventhough your local emergency room might not have a clue in regards to a TM issue, I believe that is your best response if doctors are otherwise not available. It's possible it's a problem not related to his TM, and swelling, heat and redness should not be ignored regardless of the origin. Let us know how you make out. Sue Mattis -Original Message- From: Deana Lehman [mailto:[EMAIL PROTECTED] Sent: Monday, October 15, 2007 11:27 AM To: tmic-list@eskimo.com Subject: [TMIC] Swollen Hands My husband had an acute, idiopathic TM attack August 9th of 2007. He has regained some use of right hand and arm, but the left one is stubborn and today is swollen about 3 times normal size with considerable heat and redness. Both doctors we might consult are gone, and our rural emergency room won't have a clue. Can anyone help with a suggestion? Also-in your experience, does working the hand too much or not enough cause more swelling? Thanks for your help.
RE: [TMIC] Question
Someone looking for Phran3que? He's with me. We've been sitting on my back porch breathing in the aroma of the concord grapes ripening on the vine...right here in Northwestern Pennsylvania. Sue -Original Message- From: [EMAIL PROTECTED] [mailto:[EMAIL PROTECTED] Sent: Monday, September 10, 2007 5:53 PM To: tmic-list@eskimo.com Subject: [TMIC] Question Has everybody gone to find Frank? Ann in Virginia _ See what's new at AOL.com http://www.aol.com?NCID=AOLCMP0030001170 and Make AOL Your http://www.aol.com/mksplash.adp?NCID=AOLCMP0030001169 Homepage.
RE: RE: [TMIC] OT hello?
I've always fantasized that Phranque looked like James Garner. Guess that gives away my age. Sue -Original Message- From: Grace M. [mailto:[EMAIL PROTECTED] Sent: Tuesday, September 04, 2007 7:12 PM To: [EMAIL PROTECTED] Cc: tmic-list@eskimo.com Subject: Re: RE: [TMIC] OT hello? Ladies, Don't you think that it's more fun for all of us to just fantasize about Frank's striking good looks? Think of itwhat's George Clooney for you, might be an aging Clint Eastwood for me, and a steamy Brad Pitt for someone else. Why burst our bubble? ;-) Grace
[TMIC] Thanks for the info: Cole's Grandma Carol
Group, Thanks for the responses to my request.I got what I needed. Sue Mattis
[TMIC] Cole's Grandma Carol
Hello all! I need to get a hold of Cole Ross's Grandma Carol. If anyone knows how to contact her either via e-mail or phone, I would appreciate you letting me know. It's very important, so I would appreciate hearing back as soon as possible. Thanks! Sue Mattis Co-Chairman PA Support Group 814/899-3539
RE: RE: [TMIC] no mail??
Nothing is ever normal when pHran3que is not here...! -Original Message- From: [EMAIL PROTECTED] [mailto:[EMAIL PROTECTED] Sent: Tuesday, July 24, 2007 1:47 PM To: Tracey L. Black; Grace M.; [EMAIL PROTECTED] Cc: tmic-list@eskimo.com Subject: Re: RE: [TMIC] no mail?? Thanks for e-mailing me, BUT, I have been on vacation since July 1st., and will remain on vacation till August 2nd. I'm now linked to the internet by a dial-up, 56K, modem. The tide comes in twice a day. It's been a rainy July, but not as bad as 1967. I've finished all the New Yorker Magazines, I brought with me. I have less than 70 pages in 1491 [ a book about what happened before the paleface set foot in the Americas]. Did you know that The Savages thought the europeans were, Small, Hairy and Dirty? In the 1400's paleface bathed on the average once a year, in May (Warmth), in expectation of going to weddings- guess why the weddings were in June ( it had something to do with the bath). The savages bathed year round. Did you know that The Savages thought the paleface strange when they carefully wrapped their own Snot in a hankerchief and out in their pocket ?? Your e-mail will return to normal when I return. pHran3que
[TMIC] FW: Info for reimbursement for IVIG
Hello All! As part of the Pennsylvania Support Group, I received the following E-mail and got permission from Carol to forward it to the group to see if any of you have had any experience with IVIG (Intravenous Immune Globulin). Have any of you heard of it, or have been given this treatment? Please let me know so I can forward any information to her, or if you like, you can answer her directly at [EMAIL PROTECTED] (and mark the subject as transverse myelitis). . Thanks! Sue Mattis PA TM Support Group -Original Message- From: [EMAIL PROTECTED] [mailto:[EMAIL PROTECTED] Sent: Monday, July 02, 2007 10:42 PM To: [EMAIL PROTECTED] Subject: Info for reimbursement for IVIG Hi Sue- Picked up your email address from the website -- I am writing n behalf of a patient who has now had two episodes of transverse myelitis. Her doctor is recommending IVIG (intravenous immune globulin), but her insurance company did not approve payment. What documentation have you found works for patients who have been prescribed IVIG? Thank you, Carol ___ Carol Dagney
RE: [TMIC] from Gary
Tim.. I don't think it's odd that three of you that work at the same place all have these issues. There was someone on this list a year or two ago from Ohio that had been working at a hospital that was getting renovated and there were 3 or 4 people who were either diagnosed with TM or MS during that time. She was pursuing trying to make a connection with it all, but I don't know how she made out. I believe molds were considered as a possible cause. Anyway, I don't think it's just coincidental. My opinion, of course. Sue -Original Message- From: Tim Holder (Work) [mailto:[EMAIL PROTECTED] Sent: Tuesday, June 26, 2007 5:55 PM To: tmic-list@eskimo.com Subject: RE: [TMIC] from Gary Here's what I can't figure out. I have symptoms of TM and MS. The doctor thinks it's TM only because they don't see any lesions on my brain or spine. BUT...when they did the spinal tap, the only thing they found was that the myelin protein level was raised. Which should show that there is a lesion somewhere. And that is a definite sign of MS. But, they don't see any on any MRI's. And believe me, I've had plenty. And I go back for more in August. But, because he's not seeing lesions, he isn't taking MS off the table, just in case they see some on the new MRI's. And many of you have TM and DO have lesions. So, how do they tell the difference between TM and MS at this early stage. I have had symptoms since last November. And I have a good friend who got symptoms at the same time as me. She was also diagnosed with TM. But, they just did a new set of MRI's on her and the lesions are worse so she's been rediagnosed with MS. And I have another friend who was diagnosed with MS last August. That's three of us that work at the same place. Odd, huh? Tim Holder Worship Leader for Celebrate Recovery [EMAIL PROTECTED] (501)224-7171 ext. 1454 Fellowship Bible Church 1901 Napa Valley Drive Little Rock, AR 72212-3913 -Original Message- From: Trudy [mailto:[EMAIL PROTECTED] Sent: Tuesday, June 26, 2007 2:43 PM To: tmic-list@eskimo.com Subject: RE: [TMIC] from Gary I was diagnosed with TM five yrs. ago. When I went over to Medicare I had to get all new doctors.. My new neuro decided it was MS. So he did a spinal tap (thankfully, he's very good at it) but I did have to lay there for two hours afterwards so bring some tapes!! The spinal tap was no more conclusive now than it was five yrs ago. I have lesions on the brain which is why the MS has now been diagnosed. I take Copaxone my insurance card against a serious MS attack. But I think it's TM... I do have to see my neuro every 3-4 months for checkup, prescriptions, etc... Good luck! Trudy
RE: [TMIC] ot
This might be a good one for Frank to respond to, but I'll try to explain how things worked out for me. I was initially paralyzed from the waist down with a lesion at L-5. Over a period of months, with extensive PT, I recovered to the point of walking with a cane. I did NOT receive any kind of steroids. My neuro said my recovery was remarkable as compared to most. He said that the TM caused swelling around the spinal cord, and when the swelling subsided, whatever damage remained to the spinal cord dictated the amount of recovery I would have (and therefore, the amount of disability I would be left with). Does this help at all?? Sue -Original Message- From: [EMAIL PROTECTED] [mailto:[EMAIL PROTECTED] Sent: Sunday, June 10, 2007 11:31 PM To: [EMAIL PROTECTED]; [EMAIL PROTECTED] Cc: tmic-list@eskimo.com Subject: Re: [TMIC] ot In a message dated 6/10/2007 4:32:37 PM Eastern Daylight Time, [EMAIL PROTECTED] writes: I have multiple levels. One at C4 to T2 the other at T10 to T12. The T10 - T12 leison made me paralyzed from bra line down. I went thru PT/OT and walked with a walker and was hell on wheels in a wheel chair. The C4 - T2 made me a quad. With Plasma Exchange (PLEX) and starting at square one with PT/OT after 6 months I walk with a walker but have no strength for the wheelchair. I can walk 25 - 30 feet but need to stop and rest before going on. I have an electric scooter for those times I need to go out and about. The 2nd episode really zapped me of my strength, stamini and durance. I work in burst of 10 - 15 min. before I need to rest which maybe from 20 min to hours or days depending on what I have been doing. Shopping for groceries is usually a day and half RR. I just can't get my mind around the fact that there are paraplegics who are truly paralyzed and those that can walk. There are quadraplegics who are also the same. It seems as though TM ought to stay the same all of the time...meaning I ought to be able to walk a bit like some of you. I don't know if it is better to be one of the walking wounded or not. I don't mean it to sound like I think any of you have it easier than those of us in wheelchairs 24/7. I just don't understand the various ways the same disease can affect us. Is there anyone out there who can explain it better to me? Love you, Jude 2 Corinthians 4:17 NLT _ See what's free at AOL.com http://www.aol.com?ncid=AOLAOF0002000503 .
RE: [TMIC] TM question from Sally!
Sally, I've had TM since July of 2000 and I, like your husband, walk with a cane. In the fall of 2000 flu shots were being given and I called my Neurologist to find out whether I should get one or not. He strongly recommended I get one and said anyone with a compromised immune system should. He told me than that in previous years live viruses were used in the manufacture of Flu Vaccines and that is no longer the case. He said the shot would not hurt me but instead would be beneficial. I've had a shot every year since and have not had any problems. I'm a little confused as to your remarks about getting horrific side effects from the 2nd jab. Perhaps the vaccine is different in the UK than what we get in the States? Sue Mattis -Original Message- From: Sally Wilkinson [mailto:[EMAIL PROTECTED] Sent: Monday, January 22, 2007 5:37 AM To: tmic-list@eskimo.com Subject: [TMIC] TM question from Sally! Hi Guys I really need to run something by you please. My husband who you may remember got TM in Dec 2000, and who can walk with a stick, got TM from a flu jab we are sure. He went to the Doc's on Thursday and the nurse in the surgery said he should have a jab for pneumonia. He ran that past the Doctor who said I don't see why not ??? So he had it done there and then. He then told me he'd had it done. How could anyone be so incredibly stupid? Why would he tell me? And how can I work through this? I have not lost my health to TM but I have lost a lot of my husband to TM. My life has been devastated by TM too. As you can tell I'm very hurt, angry and frightened. You can also get horrific side effects from this 2nd jab so I am terrified for his health and wondering how our marriage can carry on if he suffers no adverse side effects or further disability as he has been so stupid and did not even discuss it with me 1st. I do know this though I will run as far and as fast as I can if something else happens to him coz as far as I'm concerned its self inflicted this time. I would really welcome your thoughts and comments.especially if you can shed any light on wot might of motivated him to have this jab, and then to tell me? I have been awake crying since 4am and now I'm at work I keep getting upset again. Sorry to come to the list with all of this but my other friends do not quite understand the implications here! Sally in the UK Sally Wilkinson Business Development Manager Genesis Design The Barn Ipsden Oxfordshire OX10 6AS +44(0)1491 682277 [EMAIL PROTECTED]
RE: [TMIC] 2007/TM
Trudy.. Why on earth would you even consider leaving this group? This is THE PLACE TO BE...don't you think? I can't possibly imagine any other group could be as great as ours! Regardless whether it's TM or MS...to me we're all in this together. Sue Mattis -Original Message- From: Trudy OGILVIE [mailto:[EMAIL PROTECTED] Sent: Sunday, January 14, 2007 6:07 PM To: TMIC-LIST@eskimo.com Subject: [TMIC] 2007/TM This year I hope for a real breakthrough in all medical fields I just want to thank all of you on this list for always being there for anyone and everyone! It's been a busy time... all four of my adult children were home for Christmas and I don't start work again till Tuesday so we've been doing some travelling. I have kept up with the list tho not much to add or share. The week before Christmas my Neuro decided that I probably have MS and should begin daily shots! Actually, I guess you could call it an insurance shot against the chance that I might have MS. Tho Dr. Pardo at Johns Hopkins insists it's TM. The pain certainly hasn't lessened, in fact it's increased. My nightly glass of Shiraz doesnt' seem to help like it used to :) I just wanted to chime in during this slowtiime... to wish you all the very, very best this New Year!.. Peace, Shalom and Blessings to you and your families. Also, someone on the list asked for any old Jewelry we didnt' want anymore. I have some and would love to send it on to someone who could use it. So please get in touch with me... So what should I do... go to an MS list or stay here you fun people Trudy Worrying does not empty tomorrow of its troubles; It empties today of its strengths.
[TMIC] Rush Limbaugh/OT...or maybe not really OT
Hi, Is anyone else besides me appalled with the remarks Rush Limbaugh as made about Michael J. Fox? Sue
RE: [TMIC] today's feat
I should have also added to my previous e-mail that at onset I felt an excruciating pain in my lower back which felt like someone stabbed me with a knife. Within minutes I was paralyzed from the waist down and the excruciating pain was gone. I dont know if it had gone away.or I could no longer feel it because of the paralysis. L-5 was where my lesion was. Sue -Original Message- From: Bob and Sue Mattis [mailto:[EMAIL PROTECTED] Sent: Sunday, October 08, 2006 10:40 PM To: 'Alton Ryder'; 'TM list' Subject: RE: [TMIC] today's feat I agree Alton. My onset was within less than 10 minutes.and paralysis from the waist down . Seems more likely to be something quick like a stroke/infarction than something underlying like a virus, infection or autoimmune reaction. I was given the TM diagnosis though.and no one ever mentioned a stroke. Sue M -Original Message- From: Alton Ryder [mailto:[EMAIL PROTECTED] Sent: Saturday, October 07, 2006 8:52 PM To: TM list Subject: Re: [TMIC] today's feat My neuro thinks I had a spinal cord infarction(stroke) but all my symptoms sound similar to TM I believe that I, too, had an infarction within the spinal cord. The onset was twenty or thirty minutes, start to finish. That seems more consistent with an infarction, not an infection or an autoimmune reaction. I went from normality to paraplegic that suddenly. Alton
RE: [TMIC] Fw: I've lost all of my prednisone weight.....
You wake up in the morning and look in the mirror and discover youve grown gills. You have an uncontrollable urge to water the lawn and go out after dark with a flashlight to catch nightcrawlers. You spend way too much time in the pet area at Walmart talking to the goldfish tanks. You refer to lovemaking with your partner as spawning. You send your children to an underwater school. Your ideal vacation involves visiting Sea World. Your favorite team is the Miami Dolphins. Your favorite movie actress was Esther Williams. Your favorite movie was The Incredible Mr. Limpett. THE LIST IS ENDLESS. Sue Any possible negative effects from fish oil? increase in bm's sudden urge to go swimming especially up river fear of cats... any one else know of any neg effects? pH
[TMIC] Medications for banding
Hello group, Ive had another contact from another Pennsylvania TMer who asked me if I knew what medications could be giving for the banding and tightness. I have not personally dealt with that issue, so I told her I would put out a note on the list and ask if I could get response from those who do. She will be having another appt. with her neuro in a couple weeks, and would like some ammunition to take with her. Apparently her Dr. had told her that there was nothing that could be done for it. Well, all you experts out there, can you e-mail me back and let me know what meds youre on for that purpose? It seems that Ive heard neurontin might be one?.Please e-mail me back, and Ill see that she gets the information. Thanks for all your help. Sue Mattis
[TMIC] Pennsylvania newbie looking for help
Hello group, A couple months ago I had a gentleman contact me from near Philadelphia who has had TM since Oct./Nov, and you might remember he asked me to post a question about shellfish. Anyhow, he called me yesterday and asked if I would put up a post on the list inquiring if there are any other relatively new folks on the list that he would be able to contact. He would like to speak to someone who is relatively new to TM who would be going through the same thing he is going through right now (ex: regaining feeling, physical therapy, etc.) His paralysis was from the waist down at onset, and he has recovered in what I would consider a relatively short period of time to being able to use a cane. He would like to be able to phone someone other than me that he could talk to about what he is experiencing. If there is anyone out there that could help him with this, please e-mail me directly. He does not have a computer and our contact has been by phone and mail. Thanks! Sue Mattis PA Support Group
[TMIC] Shellfish vs TM
Hello! I got a phone call on Tuesday night from a newbie to TM who found my name on the TMA website under PA Support Group. He developed TM in November and has recovered to the point of using a walker. One of the questions he asked me, which I in turn am asking all you experts out there is this: Why would eating shellfish have a negative effect on recovery from TM? Three times since developing TM he has eaten shellfish, and after each time, he totally lost all strength in his legs.nearly to the original point of TM paralysis. This happened within hours after ingestion. I had never heard of such a thing, but I told him I would post his question to the list, and perhaps someone else out there has had a similar reaction. Anyone have any comments on this? I will pass on any information to him. He unfortunately has no computer, so I will be contacting him by phone. Thanks for all your help. Sue Mattis
