[TMIC] Multiple Sclerosis Breakthrough - Video - FoxNews.com
Thanks Gunny! http://video.foxnews.com/v/3976986/multiple-sclerosis-breakthrough
Re: [TMIC] Jim
Bernie, This is an excellent idea. I believe that the service is in Eastern Time zone so we will all need to adjust for our own time zone. Thanks for making this suggestion. Lets all be thinking of Jim, Carol and their family on the 12th at 11:00 eastern time. Carol please take care and know that we offer our strength and love to you in this most difficult time. Sandy in Wisconsin. - Original Message - From: Bernard Pelow To: TMIC ; cjb...@aol.com Sent: Thursday, September 10, 2009 6:37 PM Subject: [TMIC] Jim To All Members, Might I suggest that on the September 12th at 11:00 AM we all take a moment of silence for Jim as his family gathers for his memorial. We all owe a great debt to Jim for all of his work and contributions for us who survive him. Blessings and Peace. Namaste, Bernie and Family
Re: [TMIC] able to move slightly
Wonderful news Jim. I am so happy for you. You know the games may have some benefit as well. Read this article from the papers today here in Wisconsin. I wonder if your game playing is similar to what they are doing here. http://www.jsonline.com/features/health/54545577.html Keep it up Jim! As always you are an inspiration to us all! Sandy in Wisconsin Where we have loved our cool summer.except for all the still green tomatoes. - Original Message - From: Jim Lubin To: bradebi ; tmic-list@eskimo.com Sent: Monday, August 24, 2009 6:05 PM Subject: Re: [TMIC] able to move slightly hehe, I wonder. That is really the only thing I have been doing differently lately is playing all those games on Facebook. At 03:46 PM 8/24/2009, bradebi wrote: Jim it could be all the Mafia wars you play on facebook!!! Debi W ---Original Message--- From: Jim Lubin Date: 8/24/2009 1:38:52 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
Re: [TMIC] Re: THE 'FYI' I SENT TO THE LIST YESTERDAY...
Amen Lynn. Your information was helpful. Akua, Please delete anything that is not of interest to you. We all do it all the time. We need to talk about this healthcare bill before it becomes lawwhich may be very shortly. Sandy - Original Message - From: roseofr...@aol.com To: tmic-list@eskimo.com Sent: Thursday, July 23, 2009 12:53 PM Subject: [TMIC] Re: THE 'FYI' I SENT TO THE LIST YESTERDAY... I would prefer that we refrain from such postings and discussions on the list. The posting I sent was simply for your information because I feel we need to know what's happening with our health care and our personal information. We don't have to have a discussion about it. I have been on this list now for approx. 12 yearsand I very rarely sent posts to the list unless I felt it may be helpful to someone. I never send jokes or forwardsthey have nothing to do with our situations... I have many friends on this list and send the jokes, etc. privately. I don't want to offend anyoneever.so please just hit the delete button if you feel it doesn't apply to you. ~ Lynn -- -- Dell Deals: Treat yourself to a sweet deal on popular laptops!
[TMIC] PC revenge - spelling and the spell check poem
Every year or so I have to dig this up. I have to read it out loud! I love my spell checker but he likes to play tricks on me. Sandy in chilly and soggy Wisconsin CANDIDATE FOR A PULLET SURPRISE I have a spelling checker, It came with my PC. It plane lee marks four my revue Miss steaks aye can knot sea. Eye ran this poem threw it, Your sure reel glad two no. Its vary polished in it's weigh. My checker tolled me sew. A checker is a bless sing, It freeze yew lodes of thyme. It helps me right awl stiles two reed, And aides me when eye rime. Each frays come posed up on my screen Eye trussed too bee a joule. The checker pours o'er every word To cheque sum spelling rule. Bee fore a veiling checker's Hour spelling mite decline, And if we're lacks oar have a laps, We wood bee maid too wine. Butt now bee cause my spelling Is checked with such grate flare, Their are know fault's with in my cite, Of nun eye am a wear. Now spelling does knot phase me, It does knot bring a tier. My pay purrs awl due glad den With wrapped word's fare as hear. To rite with care is quite a feet Of witch won should bee proud, And wee mussed dew the best wee can, Sew flaw's are knot aloud. Sow ewe can sea why aye dew prays Such soft wear four pea seas, And why eye brake in two averse Buy righting want too pleas. http://www.geocities.com/Athens/8462/speller.htm
Re: [TMIC]ABOUT PAM MONTZ......PLEASE READ THIS... IT IS FOR REAL
AOL EmailYou know, I think the most memorable thing about Pam and her postings was her unique signature. She always signed off with TIAD (tomorrow is another day)...no matter what happened to her or to you, Jude, she always had her eye and heart on a better day. She gave the next day, tomorrow a chance. I will always remember her for that hopeful eye and heart. So I say have a day every so often whether it be good or bad and wear those earrings and set your eye and heart on that -TIAD. Remember her hopeful attitude. When its a bad day remember the next one carries its own possibilities. And when its a good day celebrate it knowing that tomorrow may not be so kind. But most of all remember her for bringing that simple and powerful recognition that TIAD. Lets all carry that forward. Sandy in rainy Wisconsin where even the hummingbirds are soggy. - Original Message - From: heyjude48...@aol.com To: toddtm2...@sbcglobal.net ; tmic-list@eskimo.com ; jan...@centurytel.net Sent: Sunday, June 07, 2009 8:14 PM Subject: Re: [TMIC]ABOUT PAM MONTZ..PLEASE READ THIS... IT IS FOR REAL This message goes out to Todd and all of my dearest TM friends. On Saturday afternoon, our dear Pam Montz passed away in the hospital. She had been complaining to me about her shoulder and arm pain for over a week. I believe it was her left arm, but I am not sure. I don't even know what to write. I have no details at this time. Linda Cherpenski is calling Dan to see what is going on and will let us know either by phone or email. One of us will get back to you. Pam and I were extremely close. She called me every single day just to check on me and chat. We exchanged friendship gifts, matching earrings, which I will never wear again or I will put them on and never take them off. Which one should I do??? I want to take this time to tell you that each and every one of you is dear to me. Your names, pictures and emails are etched onto my heart and I will carry them with me forever. Pam is in the wings of the Angels, on her way to the Promised Land in the world of Jesus Christ. I know that she is Catholic. I would like to begin a fund for TM research in her name. Where do I begin??? How much can we raise in her name??? I hope that you will all be as generous as possible. I will begin the donation with $300.00. Who will either match me, do me better, or simply send what you can??? When you make your donation make it out to: The Pamela Montz Foundation for Transverse Myelitis Research and I will discuss with Jim Lubin about the best way to handle the donations. One of us will get back to the List. As Tiny Tim once said, God Bless Us Everyone Love, Jude In a message dated 6/7/2009 3:42:28 P.M. Eastern Daylight Time, toddtm2...@sbcglobal.net writes: Thank you, Janice, for this topic. I was a accountant clerk. I had made the third layoffs of my company, leaving me to be the last accountant clerk for two companies. I had two wonderful bosses and worked 15 mins from home. TM hit me a few weeks before my 38th birthday. After 3 years with TM and it didn't look like I would be returning back to work any time soon. We had been going to Corpus Christi, Texas once a month to see friends and with the gas prices, we decided to retired in CC, TX. Would like to return to work, but how to keep up the PT at the same time? I too, live on Social Security disability and Long Term disability. Hope everyone is doing what makes them happy right now, Todd in CC, TX TM @ T-4 to T-8 on April 1, 2002 --- On Fri, 6/5/09, Janice jan...@centurytel.net wrote: From: Janice jan...@centurytel.net Subject: [TMIC] Occupations To: transverse myelitis tmic-list@eskimo.com Date: Friday, June 5, 2009, 11:22 AM Hi Guys! I have been curious about something for a while and since things have kind of slowed down, want to ask you all what you did before TM hit and if you were able to go back to it or if you are doing something new. I am including even those who just read these emails and don't usually respond. I would like to hear from everybody and would think all of us would be interested. I will start: I was a school nurse's secretary/assistant in a large high school for 19 years. I absolutely loved it - everyday was different, as you can imagine working with high schoolers! Our school nurse was gone a lot to other schools we were responsible for, so
Re: [TMIC] Vote for My idea, please!
Vote for My idea, please!I dont know how all United Way boards/offices workbut in our city they offer what they call Venture Grants that are outside of their regular grants and are to serve as start up funds. Check with your local United Way and see if they do this. Sandy in rainy Wisconsin - Original Message - From: Akua To: tmic-list@eskimo.com Sent: Thursday, May 21, 2009 2:50 PM Subject: [TMIC] Vote for My idea, please! I'm pushing every lever I can, to get this off the ground. Please ask everyone you know to vote for this idea. Thanks! http://www.ideablob.com/ideas/5465-Mobility-Matters-Paratransit-Se Mobility Matters: Paratransit Services One in fifty Americans in paralyzed. In Steuben County, 20.8% (over 19,000) of the population is disabled and there is no on-demand para-ransit. Public transportation is minimal .There is also no grocery delivery in the area, described as micropolitan. This project would procure a paratransit taxi and make transportation, mobility and access available to the mobility-challenged and wheelchair users in this area. The link between poverty and disability is widely recognized, yet without transportation, there is no way the mobility-challenged can get to work, shop, or fully participate in the community. ParaTransit Services would remedy this inequity. If funded the next steps would be: Secure 501c3 status Get an accountant Get an attorney Short term Lease of a Parataxi Hire a Driver Hire a part time dispatcher Thanks for listening! Thanks for your support! --
Re: [TMIC] Mayo Clinic
Yes, I went there in 2001 and was dxd with Recurrent TM ( my first bout was in 98). I saw Dr Brian Weinshenker. You can see him in his videos from the TM symposiums on the TM website. I was very impressed with the care I received. He spent quite a bit of time, over an hour, reviewing all my records and films which I had to bring with me. Then spent over an hour with me asking questions and answering mine doing assessments etc. Suffice to say I left there confident that I had all the info I needed. I never felt rushed or dismissed like I do every time I see my regular neruo. I also talked to him twice on the phone as a follow up to my visit. He had prescribed one of the MS drugs so I had to decide which one and when I would begin. I had to do my research and make my choice and he was wonderful in helping me with that. I have said this before but sometimes we just get treatment from our docsand what we really need is care. This doctor gives you the treatment you need with the care you want. I know some on this list will recommend Hopkins but for me that was not possible. Mayo is in my health system so it was my only option...I spoze unless Weinshenker would have referred me to Hopkins but anyway, I was very happy with my care and I would highly recommend going there. I would ask to see him if it were me. Thanks, Sandy in Wisconsin Where the sprouting plants are reminding me I have not cleaned up my gardens yet. - Original Message - From: C E To: tmic-list@eskimo.com Sent: Thursday, April 23, 2009 6:39 AM Subject: [TMIC] Mayo Clinic Has anyone gone to the Mayo Clinic for a work-up or 2nd opinion for any of their problems? If you did, what was the issue that you went there for and were you satified with the outcomes? Carol, forermly from Beautiful Culver, IN Rescently moved to Addison, IL (and employed!) -- Rediscover Hotmail®: Get e-mail storage that grows with you. Check it out.
Re: [TMIC] Mayo Clinic
Grace, I think you and I chatted on this list about Weinshenker when you were looking for a second opt on your Devics. When I saw him he tested me and we chatted about Devics. He talked a bit about his research and how he was looking for patients. So as I remember (hate to rely on my memory for anything) when you were looking we had this same/similar conversation. He is wonderful and deserves all the kudos. I also would like to make sure we acknowledge the power of this list. We make good things happen for each other every day and we can thank Jim Lubin for giving us all a chance to find and seek help. My best, Sandy In Wisconsin where the neglected garden sprouts are now an inch taller than they were this morning. - Original Message - From: Grace M. To: Sandy Heidel Cc: tmic-list@eskimo.com Sent: Thursday, April 23, 2009 2:49 PM Subject: Re: [TMIC] Mayo Clinic Hi Sandy, If you've had the privilege of being seen by Dr. Brian Weinshenker, you've been seen by the best. He's amazing. Not only is he a top notch researcher, but he's a compassionate clinician as well. Hugs, Gracie
[TMIC] Stem Cell - Wisconsin research
La Crosse Tribune University of Wisconsin-Madison lab makes new kind of stem cells safer By DAVID WAHLBERG | Wisconsin State Journal MADISON - The University of Wisconsin-Madison scientists who created a new kind of stem cells two years ago have removed a major obstacle to using the cells to develop treatments: genetic mutations that could cause cancer. To make the cells - called induced pluripotent stem cells, or iPS cells - scientists put key genes into skin cells to reprogram the cells back to their embryonic states. They previously used viruses to deliver the genes, but that caused permanent changes in the cells that scientists feared could cause cancer and other problems. Now they have found a way to transfer the genes temporarily, using rings of DNA called plasmids. The result is safer iPS cells because the genes that cause the cells to revert to their embryonic state dissipate and cannot cause further genetic changes. The iPS cells behave like embryonic stem cells but don't carry their ethical baggage because no embryos are used. Now iPS cells, apparently free of significant safety concerns, could be closer to being ready for use in cell transplants for diabetes, Parkinson's disease, heart disease and other conditions, though other hurdles remain. The new development, from the lab of campus stem-cell pioneer James Thomson, is reported in today's issue of the journal Science. It's a major advance toward safely reprogramming cells for clinical use, Marion Zatz, a leader of the National Institute of General Medical Sciences, part of the National Institutes of Health, said in a statement. When viruses are used to make iPS cells, the reprogramming genes become a permanent part of the cells, causing mutations that can impair the function of the cells and possibly lead to cancer if the cells were used in treatments. When plasmids deliver the genes, they die off as the cells divide, the researchers said. That should remove the risk of cancer and other problems, they said. Groups in Toronto and Boston recently announced other methods of making iPS cells more safely. But Thomson said his team is the first to fully solve the problem by getting rid of the viruses and the permanent genes. This is a fairly big milestone, he said. With this approach, the genes never integrate into the cells' genome. It's clean and safer. The Wisconsin Alumni Research Foundation, the university's tech-transfer arm, has applied for a patent on the new cells, he said. Thomson was the first scientist in the world to successfully grow human embryonic stem cells, in 1998. The process requires the destruction of days-old embryos, usually left over from fertility clinics. This month, President Barack Obama lifted Bush administration restrictions on the use of federal funding for research on the cells. In 2007, Thomson and his campus colleague Junying Yu co-discovered the original recipe for iPS cells, along with a competing team led by Japanese researcher Shinya Yamanaka. Thomson and Yu worked together again - along with Kejin Hu, Kim Smuga-Otto, Shulan Tian, Ron Stewart and Igor Slukvin - to develop the safer method for iPS cells. They relied on plasmids, the rings of DNA. They inserted seven key genes into the plasmids, which were then placed into cells from the foreskins of newborns. The genes caused the cells to revert to their embryonic state, from which they are thought capable of becoming any of the body's 220 cell types. Some of the new iPS cells have grown successfully for at least seven months. Unlike viruses, plasmids don't take root in the genetic structures of the cells, Thomson said. They last long enough to trigger the reprogramming but not long enough to cause cancer or other problems, he said. Several other safer methods of making iPS cells likely will be announced this year, as different scientists try different strategies, Thomson said. Researchers will analyze each kind and figure out which iPS cells are easiest to grow and most like embryonic stem cells, he said. Once the best approach is identified, Thomson said, scientists will have the same hurdles and hopes with iPS cells as with embryonic stem cells: figuring out how to grow them into heart, brain or pancreas cells and other cell types in a way that can repair or replace tissues damaged by disease without harming patients. Letters to the Editor|
Re: [TMIC] stem cell
I don't know for certain but here are some of the pieces of info that I have heard and you can judge for yourself if they are helpful or not. First...during the stem cell research drought many research institutions used off shore medical facilities for research to get around the law. Secondsome of these off shore medical facilities have top notch research capabilities and US partners have put their research dollars into research not treatment. Third...some are still considered second or third class treatment facilities because the $$ was put into their research not into their treatment function. Fourthif you look at some of the news programs that have done show on off shore surgeries you get the idea that while it CAN be done and can be done cheap.the rate of infection, extended recovery, and in some circumstances just plain bad medicine have not shown the success and quality of care that we US citizens have come to expect. FifthI don't think Hopkins intended for us to travel there for treatment and I would anticipate that they intend to bring their research home and help us on our own soil. I know it sounds great and its something we have to believe will someday soon come our way. But its also important to not jeopardize your overall health and wellbeing on an experimental procedure in a third world country. I know its hard to wait and wait and wait. Sandy in rainy Wisconsin where the soggy squirrels are complaining about the soggy sunflower seeds.that they are not supposed to be eating out of that squirrel proof feeder anyway. - Original Message - From: Amanda Diskey To: tmic-list@eskimo.com Sent: Tuesday, March 24, 2009 1:12 PM 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] Too Cold
AOL EmailI use an electric mattress pad (not an electric blanket) and a down comforter. I turn it on and warm up the bed and then turn it off when I get in. It helps me stay warm, relaxes my legs so they don't spasm from the cold sheets, and I fall asleep easily. I prefer light covers so the down comforter works best for me. I have read all the stuff on electric blankets and how they can be bad for you but this works for me. I turn it off when I get in bed so I don't get over heated. My body temp will drop too low so I have to make sure I keep it as stable as possible so I avoid a cold bed whenever I can. This temp thing can be either TM or MS and I have both, too. But I did have trouble with over heating and also body temp dropping low when I just had TM before the MS Rx. I think its a chicken/egg thing. All I know is my body temp seems to be set on manual now and I have to keep track of it both in summer and winter. Sandy in chilly Wisconsin where thankfully all the deer are now in the freezer. - Original Message - From: Sharon M To: tmic-list@eskimo.com Sent: Saturday, November 29, 2008 12:38 PM Subject: [TMIC] Too Cold I, too, have the temp issues. I don't know if that's TM or MS, as MS has temp control problems too. With MS it is usually heat issues. When I get cold it takes forever to warm up again! At night I have a have a hard time getting the right blankets. If my legs get too hot they will ache and it causes bladder spasms. That's what happened to me last night. The wood stove was too hot before bed and I was miserable all night with pain and bladder spasms. Does that happen to anyone else? I'm sorry, Jude, to hear how bad it is for you. hugs Sharon -- Life should be easier. So should your homepage. Try the NEW AOL.com. Jude, Temperature control is the only thing that my doc said would not return!... that said, I have found that silk underwear is the best thing to help.Silk is nice to your skin and light weight, so you need fewer heavy blankets!! I get my silks from Winter Silks, which has a 20% off sale right now. The web site is: www.wintersilks.com Hope this helps! Hugs, janh in OK --- On Sat, 11/29/08, [EMAIL PROTECTED] [EMAIL PROTECTED] wrote: Hi All, Is anyone else out there suffering from that bone-chilling cold that settles deeply into your bones and nothing you do helps to warm you up? I began to get cold earlier in the evening and have had Dave put mega blankets on me until they are so heavy I can barely lift them. I now have a queen sized silk blanket doubled on top of all of my other covers on my small hospital bed. This kind of cold came with the Transverse Myelitis and I don't believe it will ever go away. At least there is no kind of medication to warm me up that I know of. Does anyone out there have a clue? I know that some of you have also felt this chilling cold. What do you do to combat it? It is ridiculous the lengths I go to in order to be able to sleep, but am so uncomfortable that I can't. At least I am tired enough to give it a go... Jude -- Life should be easier. So should your homepage. Try the NEW AOL.com. Grace, Please know that ALL of us are sending vibes to help you make it over this hump. With all of us pushing, you know that this too shall pass! You're in our prayers. Hugs, janh in OK Sorry for being out of touch, but have relapsed. It is my vision this time. We did an emergency chemo and three days of IV SoluMedrol and I'll be repeating chemo on Devcember 8th. My vision has not improved much, and I am very disheartened. I just had an MRI of the cord, brainstem and brain, about three months ago and everything was stable---so, this really hit me out of the blue. Why couldn't it have been simple MS? Why this? We have recently had several deaths among our Devic's Advocacy members and have several more that are in terrible shape. My heart just can't cope with it anymore. I HATE this. Grace I don't have the temp. control issue but I wonder if taking capsaicin capsules might help those who do warm up
Re: [TMIC] re:guidelines
As I said thats what I dodone - Original Message - From: Jill Z To: tmic-list@eskimo.com Sent: Friday, October 24, 2008 5:26 PM Subject: Re: [TMIC] re:guidelines If it's religious or political and you DON'T like it then just delete it. Simple and done. No big deal... --- On Fri, 10/24/08, Sandy Heidel [EMAIL PROTECTED] wrote: From: Sandy Heidel [EMAIL PROTECTED] Subject: Re: [TMIC] re:guidelines To: [EMAIL PROTECTED], tmic-list@eskimo.com Date: Friday, October 24, 2008, 1:36 PM I am going to agree with the addition of religion. I have been silent on the chronic requests for prayers and thanks to god and such...but if we are going to eliminate politics lets get rid of religion as well. I delete more messages now than I read so I can just continue to do that. But if we are going to respect each others politics then lets respect each others religion as well and stop with all those messages too. Sandy - Original Message - From: [EMAIL PROTECTED] To: tmic-list@eskimo.com Sent: Friday, October 24, 2008 1:31 PM Subject: [TMIC] re:guidelines Hi Everyone, The list shouldn't be clogged with any political,religious,etc. messages.Just letters pertaining to tm. From a personal standpoint,I find it easiest to block the addresses of the people that send mesages I do not care to read. Cheryl in cool,sunny Easthampton,MA
Re: [TMIC] Oldies
Cool! Hey, if you do a concertcan you get a CD made? Or are you goin with the pressed 45? Ha. Sandy in Wisconsin where all but one (tasty) turkey outsmarted me this turkey season. - Original Message - From: [EMAIL PROTECTED] To: Tmic-list@eskimo.com Sent: Saturday, May 24, 2008 1:22 PM Subject: [TMIC] Oldies Hey people. I just talked to Norman Wright, a very old frined of mine from way back. I met Norm when I was a mere child of 15 when we went to New York to re-record Rama Lama Ding Dong for those of you who are children of the late 50's and early 60'd. Anyway, Dick Biondi who was at WHOT here in Youngstown wanted us to go to New York as he had contacted Alan Freed who was at WKBN here back then, and moved from Cleveland to NY. We went and did the song. While we were waiting for the pressing, Alan came and asked if we would back up a group becausethe studio band hadn't arrived yet, and he wanted to get the new record pressed. We went back into the studio, where I met Norman, and Corinthian ( Cripps ) Johnson. We cut a record called Whispering Bells, if any of you guys recall the Del Vikings. If you hear the song played, your gonna hear brushes at the beginning on the snare. That's me. Well, I asked Norm if they would consider doing a benefit to help with Doug's research. He said ok, but he'd have to check with his publicist to when they had an open date. Norm's gonna put the word pout to see if we can get more groups to join in. I know I can get Larry Chance from the Earles if I can find him. I have Biondi's email so, I'm gonna ask him to help. Keep your fingers crossed. -- Get trade secrets for amazing burgers. Watch Cooking with Tyler Florence on AOL Food.
Re: [TMIC] Brazil
My husband and I are learning our way through the world of red wine. We are stuck on the Malbec from Argentina. You might wanna tour some wineries. Evidently Malbec is a grape that grows better there than anywhere else in the world. Oh ya, even the cheap stuff is good! Chile has some great Carmenere too. Sandy in Wisconsin where 45 degrees seems downright balmy! - Original Message - From: T Kanon To: tmic-list@eskimo.com Sent: Thursday, April 03, 2008 11:47 AM Subject: [TMIC] Brazil Dear TM Family, I left for Brazil on March 24. My family doctor who is an infectous disease specialist suggested that I DO NOT take the shot for yellow fever so I did not!!! BTW, I´m still in Brazil and will be returning on April 5th. I and five friends landed in Rio and from then on referred to ourselves as the girls from Ipanema. I am having the most awesome time. I am challenging myself to do things that I probably would not do if I was able bodied!!! I took a cable car up Sugar Loaf mountain, toured the city which is so beautiful and ate, ate, ate,. I am now in Iguassu Falls. I walked the cat walk to the Argentina side, took the boat ride which literally goes under the falls and today I took a helicopter ride over the falls. I was so scared doing each of these things but what a great feeling afterward. Having wonderful friends who were always there to give me a hand and encourage me made the difference. I used bug spray with DEET which I don´t like but I felt protected. All those who are deciding whether or not to travael.I say DO IT!!! I ´m not home yet and still can´t believe the experiences I´m having. Am I dreaming?? Stay well everyone, Tobe Foz do Iguaçu Brazil -- You rock. That's why Blockbuster's offering you one month of Blockbuster Total Access, No Cost.
Re: [TMIC] Air Travel
Again...A YouTube video would help a lot. Sandy - Original Message - From: [EMAIL PROTECTED] To: Tmic-list@eskimo.com Sent: Friday, March 28, 2008 10:21 AM Subject: [TMIC] Air Travel I remeber the first sympoium I went to in Seattle. I had to fly out of Cleveland. It seems when I got the wheel chair to the door of the plane, a sweet youg thing, stewardessI guess, or flight attendant, whichever you prefer lloked at me straight in eyes. She said, I have a very simple solution to get you to your seat, are you ready? I said yes, and at that point she pulled out a stun gun, zapped me on my ass, and proceeded to watch me fly through the air, landing in my seat, to where she then duct taped me in place. It was a pleasant flight needless to say. -- Create a Home Theater Like the Pros. Watch the video on AOL Home.
[TMIC] Disability Travel and Recreation Resources
This just popped in to my memoryI recall a discussion on the travel topic some years ago and we were referred to this website done by our very own Jim Lubin. Hope you find what you are looking for. http://www.makoa.org/travel.htm Sandy in Wisconsin where yesterday it was sunny and 50 (yes it was) and today its low 30s predicting snow.
Re: [TMIC] Fluid retention
Are you all thinkin what I am thinkin??? Yup thats right.YOU TUBE! I am gonna need to see a You Tube video of you putting your socks on this way! Then we can vote on a titleSocks gone wild? We could get Frank to do it and call it Frankinsocks. Okay I am done now. Sandy in Wisconsin where the wood box has been filled for the last time this year and I mean it. - Original Message - From: jrushton To: Butcher Bernard G (NY80) ; tmic-list@eskimo.com Sent: Thursday, March 27, 2008 12:59 PM Subject: RE: [TMIC] Fluid retention Well, I learned this after the nurses in PT would battle daily with my socks and then one day this little gal came in and whipped those old socks on like a hoodathunkit!! I hope I can explain it well... Turn the sock completely inside out and then turn just the toe right side out. Put the toe part over your own toes and then slide the sock right up your foot onto your leg. It works every time. Try it and see if I have explained it well enough? Jeanne ---Original Message--- From: Butcher, Bernard G (NY80) Date: 3/27/2008 2:50:26 PM To: jrushton; tmic-list@eskimo.com Subject: RE: [TMIC] Fluid retention No - I would love to hear it! BERNARD BUTCHER From: jrushton [mailto:[EMAIL PROTECTED] Sent: Thursday, March 27, 2008 3:39 PM To: Butcher, Bernard G (NY80); tmic-list@eskimo.com Subject: RE: [TMIC] Fluid retention Bernard, has anyone shown you how to put the socks on by first turning them wrong side out? Jeanne ---Original Message--- From: Butcher, Bernard G (NY80) Date: 3/27/2008 8:33:01 AM To: [EMAIL PROTECTED]; [EMAIL PROTECTED]; [EMAIL PROTECTED] Cc: tmic-list@eskimo.com Subject: RE: [TMIC] Fluid retention I also have this problem. I wear compression socks they help. But they are a bear to get on off BERNARD BUTCHER -Original Message- From: [EMAIL PROTECTED] [mailto:[EMAIL PROTECTED] Sent: Thursday, March 27, 2008 9:29 AM To: [EMAIL PROTECTED]; [EMAIL PROTECTED] Cc: tmic-list@eskimo.com Subject: Re: [TMIC] Fluid retention I also start the day out with thin ankles and end up with fat ones. My solution for the dependent edema- swelling caused by gravity and the lack of nerve control of the arteries and veins- is hanging upside down. I put in my ear-buds, turn on my ipod, and flip myself upside down for 30 minutes. Works great. F
Re: [TMIC] leg stiffness
My leg stiffness and pain go hand in hand. I also have noticed an increase in both if I am wearing jeans vs loose fitting sweats or a dress. It seems like if my legs have to fight the clothing or even if they are sensing the clothing it takes its toll. My legs wear out faster and my pain increases if I am wearing pants against my skin. The last time I had stockings and a dress on I was miserable as well. All I can figure is that its a constant conversation between my skin and brain that gets waylaid by the cord...like sensory overload or sensory confusion or something. Sometimes after a day my skin will feel like a bad burn wherever the clothing is tight. Like cuffs on a shirt, turtleneck, waistband, etc. Maybe try wearing something loose fitting and see what that does for you. Works for mewhich in the TM world we know means very little. Everyone has their own tricks it seems. Sandy In Wisconsin where the snow is deep and the Packers forgot how to play outside. - Original Message - From: Todd Tarno To: tmic-list@eskimo.com Sent: Thursday, December 27, 2007 11:02 AM Subject: Re: [TMIC] leg stiffness Massage twice a week would be great for us, if we can get it. But it must be even better with HEAT to losing the muscles. I have been riding a stationary bicycle, it didn't start helping until I went from 3 times a week to EVERY DAY. I get more tired, but it is good for me. Todd in CC, TX [EMAIL PROTECTED] wrote: Oh, yeah! Stiffness is due to muscle spasms. I have been going to a massage therapist for over a year now, and she is really just getting some of the knots to loosen with heat and massage. I have hopes that this will help more and more. today she got my left lower leg looser than it has been in five years, and she says there's more to go. It has sure been an uphill battle, but there is always hope. Cora in OK anyone else having this problem? - Never miss a thing. Make Yahoo your homepage.
Re: [TMIC] It is that time of year
Careful when driving that your Karma doesn't run over your Dogma. Oldest Karma joke around I know. Merry Christmas all Franks right we should all send money to TMA. Sandy thankfully in the snowy not icy part of Wisconsin - Original Message - From: [EMAIL PROTECTED] To: tm tmic-list@eskimo.com Sent: Wednesday, December 12, 2007 3:40 PM Subject: [TMIC] It is that time of year Dear TMers, It's time to think of others, like the Transverse Myelitis Association!! Making a donating is a great way to help others. Donating to the T.M.A. increases your Kharma. Time to send them a check: $5.00, $10.00, $20.00 or $50, or more. The address is on the web site, or perhaps someone knows it from memory. I mailed a check last week, my annual donation. The very next day, I received a letter from the I.R.S.. They had recalculated my taxes for the last FIVE years, included was a check for $39,311.00. That afternoon I found a hundred dollar bill. We went for dinner; half way through the meal, the chef emerged, came to our table and asked how everything was. It's wonderful, we chorused. He responded, I'm so glad, so with pleasure, you all are my guests this evening. So, SEND A DONATION. GOOD THINGS ARE WAITING TO HAPPEN TO YOU!! Frank
[TMIC] Fw: TMIC list
Gang, Natalie is having trouble getting back on the list. If anyone can help her with this please do. I don't know what to tell her. I know some of you have had these troubles in the past and maybe you could coach her through this. Thanks, Sandy - Original Message - From: Natalie Mizenko To: [EMAIL PROTECTED] Sent: Saturday, November 24, 2007 8:44 PM Subject: TMIC list Dear Sandy, I have tried for 3 months it seems to get back into tmic-list (the international chat group for Transverse Myelitis other things), but I keep getting a reject for something like it is rejecting because I don't belong to Microsoft Outlook Express and a reject notice comes up fast. So, instead of going thru an email I try to go back start over and they still don't except me. What happened, I was using the email [EMAIL PROTECTED] my pswd. entered. Somehow Yahoo was rejecting my password and I could not get anywhere so my husband just restarted me w/ the [EMAIL PROTECTED] email and they still won't accept me. Can you somehow forward this to the group or someone in charge whomever that might be. I've totally lost contact with everyone I miss them all. Thanks, Natalie Mizenko Get easy, one-click access to your favorites. Make Yahoo! your homepage.
Re: [TMIC] MRI of the brain
Not necessarily. I have to ask and usually say that I want the head and neck. Its one of those border areas so some of the stem may be included but not all of it and not the top of the cord. I think its best to get the whole brain and C spine myself. If you have a history of damage there or if your symptoms seem to indicate that your damage is there then its best to do the whole shebang. Otherwise, like me in 1998 you wind up going in for three MRIs in a row just to get the right section. No sense or cents in thatthat was a health care cost pun dontcha know. Ha I know, Ha. Sandy in Wisconsin where the deer are hanging but not jumping into the freezer on their own today. - Original Message - From: sal r To: tm Sent: Tuesday, November 20, 2007 2:03 PM Subject: [TMIC] MRI of the brain when they do an MRI of thge brain does that include the brain stem and cerebellum? -- Get easy, one-click access to your favorites. Make Yahoo! your homepage.
Re: [TMIC] MRI of the brain
Yup big fan of the contrast. But I don't get em routine anymoreI have to qualify! Sandy - Original Message - From: Grace M. To: Sandy Heidel Cc: tmic-list@eskimo.com Sent: Tuesday, November 20, 2007 3:15 PM Subject: Re: [TMIC] MRI of the brain Hi Sal and Sandy, They always do everything whenever I go. Brain, C Spine, thoracic, etc. They do one without contrast, and one with. I get one every 6 months now. Grace
Re: [TMIC] MRI's
As I understand it shows activity at the lesion site. So new lesions show up well. For those of us with recurrent TM this can mean the difference between a whole new attack and a flare of an old lesion. Old lesions can flare and will also light up on dye. New lesions at new locations can mean a lot diagnostically. I had three MRI's in the beginning of my diagnosis that showed nothing. The fourth one included dye and cha ching there it was like a little light bulb. And don't my fillings and caps look dandy too I must say! Sandy in chilly Wisconsin awaiting the opening of deer season and the taste of fresh venison. - Original Message - From: sal r To: tm Sent: Thursday, November 15, 2007 3:26 PM Subject: [TMIC] MRI's I always wondered what the difference between an MRI with contrast and w/o contrast is...why do they do both? please explain... -- Get easy, one-click access to your favorites. Make Yahoo! your homepage.
[TMIC] article Brain-Injured Man Speaks After 6 Years
Brain-Injured Man Speaks After 6 Years Brain-Injured Man Speaks After 6 Years Aug 1 01:01 PM US/Eastern By MALCOLM RITTER AP Science Writer NEW YORK (AP) - A brain-damaged man who could communicate only with slight eye or thumb movements for six years can speak again, after stimulating electrodes were placed in his brain, researchers report. The 38-year-old also regained the ability to chew and swallow, which allows him to be spoon-fed, rather than relying on nourishment through a tube in his belly. The man's brain was injured during an assault, he spent six years with only occasional signs of consciousness and no useful movement of his limbs. In an experiment, researchers implanted electrodes in his brain for a procedure called deep brain stimulation, which is routinely done for Parkinson's disease and some other illnesses. They turned the electrodes on and off over six months to test their effect, and reported the results in Thursday's issue of the journal Nature. The man, who was not identified at the family's request, now has them on throughout the day. Experts called the report exciting but cautioned that the approach must be tested in more people before its value can be known. The researchers have already begun a study of additional patients. Before the electrodes were implanted the man was in what doctors call a minimally conscious state. That means he showed only occasional awareness of himself and the environment. In a coma or vegetative state, by contrast, patients show no outward signs of awareness. There are no firm statistics on how many Americans are in a minimally conscious state, but one estimate suggests 112,000 to 280,000. Doctors may try medications to improve their condition but no drugs have been firmly established as helpful. The man described in the Nature study speaks in a breathy but audible voice, said Dr. Joseph Giacino, a co-lead author. He does not initiate conversations but can reply to others, typically with one to three words, said Giacino, of the JFK Johnson Rehabilitation Institute in Edison, N.J. Several weeks ago he recited the first half of the Pledge of Allegiance without assistance, Giacino said. The man also recovered some movement. He can demonstrate motions such as brushing his teeth, said study lead author Dr. Nicholas Schiff of Weill Cornell Medical College in New York. He can't actually carry out that task because the tendons in his arms contracted after years of immobility. He is still totally dependent and severely disabled, Schiff said. But the treatment has helped him, the man's mother said in a statement. Now, my son can eat, express himself and let us know if he is in pain. He enjoys a qualify of life we never thought possible, she said. Dr. James Bernat, a professor of neurology at Darmouth Medical School who didn't participate in the new work, called the Nature report exciting and important. Further study is needed to shed light on how many patients would respond and how to identify the minimally conscious patients with the best chance of being helped, he said. He noted that a similar treatment did not help Terri Schiavo, the Florida woman in a vegetative state whose care triggered national controversy before her death in 2005. That's the typical outcome for electrical brain stimulation in vegetative states, he said. Dr. Ross Zafonte of the University of Pittsburgh, who also was familiar with the study results, agreed that we need to know more and said the approach is very interesting and holds great promise. ___ On the Net: http://www.nature.com/nature Copyright 2007 The Associated Press. All rights reserved. This material may not be published, broadcast, rewritten or redistributed. dot.giflogo.gifap.gif
Re: [TMIC] grocery delivery
I have not joined in on this since going to the grocery store is still one of those things I CAN do one day a week. But in many Wisconsin communities they have a program called Market Basket or something like that. If I understand it correctlyyou get a large box of groceries at a discount and there are volunteers who deliver them. I think its set up that you can pick them up for yourself. But when I was looking at it a few years ago they were looking for volunteers who would not only belong to the program but also deliver the boxes to those who could not get out. Also...in some areas, more everyday, there are CSAs. Those are Community Supported Agriculture farms that grow vegies and fruits for members who pay up front and get a box of fresh produce every week. Its like having your own garden without the dirt, sweat, blisters and bending. The ones around cities I understand deliver to your door...more for working people who like to come home and find a cooler with fresh vegies on the back steps than disabled folks who cant travel...but you get the deal. My two cents, Sandy in hot, hot, too hot Wisconsin. Did I mention its rather hot today? - Original Message - From: cakalley [EMAIL PROTECTED] To: Akua [EMAIL PROTECTED] Cc: tmic-list@eskimo.com Sent: Wednesday, June 13, 2007 3:39 PM Subject: Re: [TMIC] grocery delivery OK here's another 2 cents from m Where is it that you live - city, state, zip? Maybe each of us can do some searching and find something to help you and those in your building. OK you say some can do and others can't and they have to pay outrages price. You seem to have repore with your neighbors, gather those that have been paying, and those that can do, and once a week you all have your grocery list together; then, put all lists together, have one of the special priced people get and deliver then everyone pays a portion of the delivery fee. OR, as I sure some of those that can do need extra money and would be happy to do it for a reasonable fee. To me that seems like a win/win situation for all concerned. Also, if you have had neighbors die, hopefully not from starvation, I hope someone in the state or federal organization investigated! How helped you get in the building you are in? -Original Message- From: Akua [EMAIL PROTECTED] Sent: Jun 13, 2007 3:30 PM To: cakalley [EMAIL PROTECTED] Subject: Re: [TMIC] grocery delivery Akua, Please don't bristle - we are just trying to help. I know how your feel about more to do, but sometimes it does take persistance. I know that there are days where you don't feel like being persistant, but those days that you do, make a list of people and places to call. Then on another day when you once again feel like being persistant, start calling. Is there a Meals on Wheels? Yes, there is. but that's not shopping help If you're in a building for elderly and disabled, surely someone should, would, know of an answer. Again i reported on what the building had to say. folks who can do, others who can't pay the onerous charges and others, like my neighbor, die. Another thought, try calling local churches. Here in Naples, there is an organization for the elderly and they sometimes help the disabled. Just a few thoughts. Candy K. -Original Message- From: Akua [EMAIL PROTECTED] Sent: Jun 13, 2007 2:15 PM To: tmic-list@eskimo.com Subject: Re: [TMIC] grocery delivery Here in Montreal we can phone in an order to P.A. Supermarche and they deliver free- we do have to pay for the food. F You're fortunate. That's sadly not an option here. If anyone knows of a place in my city, I welcome it, but other than that I must say that I'm very taken aback that my report of the unavailability of something is met with more tasks as if I have not already, sought, looked, asked. Surely it must... It doesn't here. If you know where it does, I welcome the information. If not, I bristle at the obvious. I met a entrepreneur who was starting a delivery business--- he was delivering my order from an Indian restaurant. He confirmed that few restaurants offered delivery, hence his business to deliver for restaurants. I asked him about grocery delivery--- not something the culture deems important. He knew of none. (He's a native, I've only lived here the length of my TM). I live in an 23- story apartment buidling designated for the disabled and elderly. My state of being is new to me, but not to them. I searched and could not find., I asked and no one had an answer. I lost a lot of weight between the lack of anything remotely edible or healthy at the nursing home and my finding my way in this apartment. As my short term PT said, the less to have to move by hand. The management office offered the $20/hour plus gas person and the onsite twice weekly rip off lady. There are other experts the Center for Diability Rights, the Center for Independent Living. Neither knew of
Re: [TMIC] Re: Who's got what?
I have been turkey hunting so I have not jumped in on this discussion...but I had my first TM attack in 09 and my second in 01. They added Probable MS to my Dx and gave me betaseron and since I have switched to Rebif. I had another attack last July and this time the MRI showed my first lesion on the brain. I tell everyone I have both Recurrent TM and MS. I started with TM and those symptoms remain. But the newest problems and damage has been from the MS. It was reading messages from Bobby Jim before and since my 2001 second attack that let me know that progressing to MS was nothing to be afraid of and something I could survive and deal with. I value his opinions, experience and his humor. Sandy (who despite her persistence has not killed a turkey this year. I will give it another shot this week!) - Original Message - From: Jill Z To: tmic-list Sent: Sunday, May 13, 2007 5:09 PM Subject: Re: [TMIC] Re: Who's got what? I don't mind hearing about people who have other diseases, syndromes, whateverI have TM and my best friend has MS. Sometimes we compare notes. It sure doesn't hurt since it seems like we're all in the same kinda boat. I'm always worried that my TM will come back OR progress to MS? Happy Mother's Day to all you moms! Jill Jan Hargrove [EMAIL PROTECTED] wrote: Here's my thinking, Bobby Jim has been at least with us 10 of the 11years I've been here, and he is a valued member of this group...his lady may have progressed to MS, but Bobby Jim is still here as a caregiver and a great friend and member of this family!!! My 2 ¢ janh [EMAIL PROTECTED] wrote: In a message dated 5/12/2007 7:18:41 PM Eastern Daylight Time, [EMAIL PROTECTED] writes: Me missus came down with TM in 97 September at T-8. No action taken; no meds, no nada. Then, in 99 Feb she had a second attack, this time at C-5,6. She was given steroids for a few dayze then about a month later, her dx was changed from TM to MS and we started her on Avonex. Nowadayze, 346 shots later, she's still on Avonex and holding up quite well. Yes, but MS is a totally different disease than TM, so what does she have to do with us? I'm happy for her that the medication for MS is working so well with her, but I'm afraid it wouldn't do much for me? What do you think, Frank? ElBobberino has much wisdom and a lot to share with us, but when he talks about his missus' , illness, it really has nothing to do with TM. Shouldn't they be sharing with those on a site for MS? Peace and Prayers, Jude -- See what's free at AOL.com. www.greatamericanbeanbag.com
[TMIC] Detromethorphan
Yes, the cough syrup. I have a friend who has spinal cord damage from an accident and has intermittent infections and inflammation. His ongoing problems are very much like TM although caused by a specific trauma to the column and cord. His brother and sister in law are both doctors, specialists who do both treatment and research. They recently tipped him to a study using dextromethorphan (over the counter) to supplement his regular pain drugs. He avoids taking the drugs as much as possible due to the fuzzy brain feeling he hates. But he said the dextro has reduced his use of pain drugs by 50%! He said the dextro does not cause drowsiness or any other side effects (to him). He said the study he read said the path the drug follows in your system is a direct line to the spinal cord where it acts on the nerve fibers to settle them down. Sounds good to me! Anybody else every try this?? Sandy In Wisconsin where my first turkey season has come and gone without a bird to brag about.I have another season in two weeks so stay tuned.
Re: [TMIC] Detromethorphan
I am not sure of his dosage. But he swears by it. Sandy - Original Message - From: [EMAIL PROTECTED] To: Sandy Heidel [EMAIL PROTECTED]; TM list tmic-list@eskimo.com Sent: Monday, May 07, 2007 2:41 PM Subject: Re: [TMIC] Detromethorphan Anybody else every try this?? Sandy, I've been using Dextromethorphan for two or more years. I use 60 mg twice a day. Up till recently I used DexAlone- 30 mg gelcaps, #30 for $14., but the company stopped making it, so now it needs to be compounded so costs $50. for #30 What dosage does your friend use?? F
Re: [TMIC] numb hand
My TM lesions are in the C3 and C1. I have all kinds of numbness, tingling and weird feelings in my hands. None of them are genuine. Things that should cause pain do not and so on. But it may be a sign that you are having some lesion activity higher up on your cord. I would call and make an appt and get an MRI. They should use the contrast dye and it will make any active lesions light up. Good luck and don't delay, Sandy In snowy, snowy Wisconsin. - Original Message - From: [EMAIL PROTECTED] To: tmic-list@eskimo.com Sent: Sunday, February 25, 2007 12:31 PM Subject: [TMIC] numb hand Has anyone woken up at night with a numb hand? Twice in the last week, I've woken up during the night with my left hand numb. The first time I just chalked it off as being b/c I'd fallen asleep laying on my back on an ice pack for a couple of hours. But when it happened again last night, I got a little more concerned. Part of what makes me more concerned is that for the last couple of weeks, my upper spine has been feeling a bit weird. My TM lesion is T6 - T8, but now I'm starting to worry about something higher in my back. Now that I think about it, when I was jumping (lightly) on the little trampoline at PT, I felt this funny feeling in my upper spine (like maybe it was sort of jamming together). Then at water exercise, I've started participating in the jumping jacks that sort of does the same thing to my upper spine. Of course, it's not like jumping on the ground b/c the water cushions the movement, but maybe my body isn't ready for this. Any experiences with these kinds of things? Sally
Re: [TMIC] WONDERFUL NEWS
Fantastic! give my sincere congrats to Ashlee. Its a combination of hard work and a lot of patience that makes for progress. Oh ya, and a little bit of medical care on the side. Great news. Sandy - Original Message - From: Tracey L. Black To: TM List Sent: Tuesday, January 23, 2007 4:12 PM Subject: [TMIC] WONDERFUL NEWS My daughter, Ashlee, has just permanently given up her wheelchair. She is now using an up n go walker and her forearm crutches as her only form of transportation!!! She is coming up on her 2 year anniversary with TM, on Feb 1, 2007. 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. PawPrint.gif Description: GIF image
Re: [TMIC] TM Spasms
AOL EmailReported January 3, 2007 Botox: Helping Patients Move Again WINSTON-SALEM, N.C. (Ivanhoe Broadcast News) -- You've seen the results of people who look years younger after Botox injections. But Botox is turning out to be more than a fountain of youth ... It's becoming a life saver for some people battling serious illness. Nine-year-old Andrew Carter is not afraid to fall off a horse. And he refuses to let cerebral palsy get the best of him. I like the jumping, he says. That's my favorite part. When Carter tried to move, his muscles would fight him -- jerking him around. It's a condition called spasticity. Botox injections help calm his muscles. He says, It hurts but I really do think it helps because it loosens me up. Botulinum toxin is what causes food poisoning, but in patients like Carter, it's targeted to specific muscles. It causes partial paralysis in the muscle you inject it into, Orthopedic Surgeon Lewis Andrew Koman, M.D., of Wake Forest University Baptist Medical Center in Winston-Salem, North Carolina, tells Ivanhoe. Botox is also helping stroke patients, like Ginger Hinshaw, by relaxing muscles. Before Botox, Hinshaw could barely move after her stroke. My left hand -- if it's not in this splint, my fingers will just be in a knot, she says. Today, Hinshaw is able to write about what happened to her. She says, I have a lot of exercises and stretches to do at home to get me ready for my next phase of recovery. Wake Forest Neurologist Allison Brashear, M.D., says there's no risk -- and patients can take it again and again and again. The beauty of the drug is that you put the Botox in the arm, and it just stays there. Botox is also being used to help multiple sclerosis patients and patients with traumatic brain injuries. Injections need to be repeated about every four to six months. There are no known side effects. This article was reported by Ivanhoe.com, who offers Medical Alerts by e-mail every day of the week. To subscribe, go to: http://www.ivanhoe.com/newsalert/. If you would like more information, please contact: Karen Richardson Public Relations Wake Forest University Baptist Medical Center (336) 716-4453 - Original Message - From: [EMAIL PROTECTED] To: TMIC-LIST@eskimo.com Sent: Tuesday, January 16, 2007 6:29 PM Subject: [TMIC] TM Spasms Hello All, It's me again, complaining with my continuous woes. I am so sick of this! Does anyone out there know what causes the response, in some of us, known as spasms? I have had them, hard, from day one--around my abdomen. It feels as though someone is fastening me into a lace up corset where they put one foot in the middle of your back and pull as hard as they can before going on to the next set of laces. I have no idea what has set off this particular set of spasms, but I have had them steady, day and night, without stopping for almost one month. I am taking Baclofen and Valium which are not cutting the spasms one bit. I do a lot of cry-babying on this list because that is what it is here for, but I am normally pretty stoic and can take a lot of pain. Has anyone here on the List had continual spasms like this? I'd like to know what they did for them. Please find me some relief and solace. Please keep me in your Prayers and I will do the same for you one day. Thanks, Jude attachment: 15215_1.jpg attachment: 15215_2.jpg attachment: 15215_3.jpg
Re: [TMIC] Re: tmic-digest Digest V2007 #3
I think discarded embryos are incinerated like a lot of medical waste is. Could be wrong. I favor the beneficial use of donated embryos because I feel that its just like any organ or tissue donation. I was on the national registry for bone marrow donors even before there was a national registry. Of course an auto immune thing and TM meant I am no longer a suitable donor. But I think a couple should be allowed to donate any unwanted embryo as living tissue and that can be used in research and treatment. Of course I admit---I have a bit of a bias. Here is a link to federal elected officials. http://www.usa.gov/Agencies/Federal/Legislative.shtml Sandy in too warm Wisconsin. - Original Message - From: Regina Rummel To: tmic-list@eskimo.com ; [EMAIL PROTECTED] Sent: Thursday, January 11, 2007 9:51 AM Subject: [TMIC] Re: tmic-digest Digest V2007 #3 Re: Stem Cell Research (HR3 discussed in Congress today) I wanted to email all the congressmen (women) who refuse to vote for HR3. Having suffered the consequenses of TMIC for the last 3 years, and having been dismissed by a neurologist considered one of the best in the county if not the best, my only hope for all of us is the passing of HR3. I'm not terribly savy on the computer, does one of you kow do I access those congressmen? I would like to ask them if they feel so sorry for embryos, and consider stem cell research murder, what do they think happens to them when they are discarded? They're dumped, trashed, aren't they? GinaJune [EMAIL PROTECTED] wrote: tmic-digest Digest Volume 2007 : Issue 3 Today's Topics: [TMIC] Re: tmic-digest Digest V2007 [ [EMAIL PROTECTED] ] RE: [TMIC] Re: tmic-digest Digest V2 [ Larry Throne [TMIC] (no subject) [ [EMAIL PROTECTED] ] [TMIC] Orgasm after total spinal cor [ [EMAIL PROTECTED] Re: [TMIC] Orgasm after total spinal [ Jenna Stentz ] [TMIC] slow [ wim from holland Date: Mon, 8 Jan 2007 17:35:22 EST From: [EMAIL PROTECTED] To: tmic-list@eskimo.com Subject: [TMIC] Re: tmic-digest Digest V2007 #2 NALTREXON AND VIVITRAL! I WAS SUPERVISOR OF THE PHYS UNIT FOR A VERY LARGE HOSPITAL FOR YEARS. WE USED NALTEXON FOR SUBSTANCE ABUSE.WE DID NOT USE IT FOR ANY OTHER REASON. IT WAS A GOOD DRUG IF THE PATIENTS DID WHT THEY WHERE TOLD. ANY ADDICTION IS HARD TO BEAT. I HAVE NEVER HEARD OF IT BEING USED FOR PAIN. I NO LONGER WORK, BUT I WILL CALL A FEW OF THE DOCTORS I WORKED WITH IF THEY NOW DO THAT. I ASKED MY INTERNIST ON FRIDAY AND HE SAID HE KNEW NOTHING ABOUT IT FOR PAIN. VIVITRAL IS GIVEN BY INJECTION AND LASTS A MONTH, ITS BETTER BECAUSE NALTREXON ONLY WORKS WHILE TAKING IT.I STOPPED WORKING WHEN VIVITRAL CAME OUT. I AM GOING TO DO SOME RESEARCH ON IT. IF YOU FIND OUT ANYTHING PLEASE LET ME KNOW. I AM VERY INTERESTED. PAM Date: Mon, 08 Jan 2007 19:58:06 -0600 From: Larry Throne [EMAIL PROTECTED] To: [EMAIL PROTECTED], tmic-list@eskimo.com Subject: RE: [TMIC] Re: tmic-digest Digest V2007 #2 Howdy Pam, I haven't read the all of the information on the website that was sent about the LDN but after a short scan, I don't think it is being used for pain management. Evidently it is somehow enhancing or boosting the immune system or something like that? Not sure and I plan on reading more about it. Larry in Oklahoma where mom puppies are doing great Larry Throne, MSW -- From: [EMAIL PROTECTED] To: tmic-list@eskimo.com Subject: [TMIC] Re: tmic-digest Digest V2007 #2 Date: Mon, 8 Jan 2007 17:35:22 EST NALTREXON AND VIVITRAL! I WAS SUPERVISOR OF THE PHYS UNIT FOR A VERY LARGE HOSPITAL FOR YEARS. WE USED NALTEXON FOR SUBSTANCE ABUSE.WE DID NOT USE IT FOR ANY OTHER REASON. IT WAS A GOOD DRUG IF THE PATIENTS DID WHT THEY WHERE TOLD. ANY ADDICTION IS HARD TO BEAT. I HAVE NEVER HEARD OF IT BEING USED FOR PAIN. I NO LONGER WORK, BUT I WILL CALL A FEW OF THE DOCTORS I WORKED WITH IF THEY NOW DO THAT. I ASKED MY INTERNIST ON FRIDAY AND HE SAID HE KNEW NOTHING ABOUT IT FOR PAIN. VIVITRAL IS GIVEN BY INJECTION AND LASTS A MONTH, ITS BETTER BECAUSE NALTREXON ONLY WORKS WHILE TAKING IT.I STOPPED WORKING WHEN VIVITRAL CAME OUT. I AM GOING TO DO SOME RESEARCH ON IT. IF YOU FIND OUT ANYTHING PLEASE LET ME KNOW. I AM VERY INTERESTED. PAM Get live scores and news about your team: Add the Live.com Football Page Date: Mon, 8 Jan 2007 22:53:44 EST From: [EMAIL PROTECTED] To: tmic-list@eskimo.com Subject: [TMIC] (no subject) am on neurontin and it is non addictive, it helps a great deal for me. I also am on zanaflex and flexeril for muscle relaxation.
Re: [TMIC] Stem cells
Ya know, you put this together with the blood and cells taken from the umbilical cords and we might just find a clear path through this controversy. Sometimes this stuff makes discovering electricity look easy. Sandy - Original Message - From: Gunny [EMAIL PROTECTED] To: Tmic-list@eskimo.com Sent: Thursday, January 11, 2007 2:03 PM Subject: [TMIC] Stem cells I don't know how many of you have heard but, the stem cells needed for our particular condition have been found in embryonic fluid. No matter what happens about the embryonic cells, the one found in the fluid can be used. Were well on our way. Gunny PeoplePC Online A better way to Internet http://www.peoplepc.com
[TMIC] nerve stimulator implant
I have a friend who has some spinal cord damage from an old accident. He has been having severe pain and some atrophy in one leg. His doctors are recommending an electronic nerve stimulator implant to stop the pain and also to stimulate the nerves in his leg and hopefully arrest the atrophy. I remember that over the years some of us on the list have used these devices and also reported to the list about them. I know very little about all of this so I thought I would ask. He is set to undergo the surgery in about two weeks. You can email me off the list at [EMAIL PROTECTED] if you have any info on how these work, special precautions, recovery time, stuff like that. I will pass it along to him. Thanks, Sandy In sunny Wisconsin where we are in the middle of duck season. I shot my first diver duck last week. Tasty!
Re: [TMIC] Not Devic's (MS)- then what???
My last tap showed increased pressure. My neuro called it Pseudo Tumor Cerebri and said, "Well now we have something else to add to your list of rare neurological disorders." I said, " I am not looking to expand the list." He loves the diagnosis part of his job. I try to prevent him from using those skills any more than he has to. But it can evidently cause blindness and so I have to have my eyes checked for damage from the increased pressure on the retina. It can also cause headaches but I cant say that thats my case. I have migraines that come and go but they were here before the TM or the PTC. I am wondering now if an increase in pressure is part of the active disease cycle and if its common to TM or MSers when a tap is done during an attack? Sandy - Original Message - From: Butcher, Bernie [SFS] To: Beverly Barr ; tmic-list@eskimo.com ; [EMAIL PROTECTED] Sent: Wednesday, September 20, 2006 10:19 AM Subject: RE: [TMIC] Not Devic's (MS)- then what??? They thought I had Hydrocephalus - too much fluid (?) - they had me on my feet 15 minutes after the spinal tap (they took 50cc) no improvement in my walking BERNARD BUTCHER From: Beverly Barr [mailto:[EMAIL PROTECTED] Sent: Wednesday, September 20, 2006 10:48 AMTo: Butcher, Bernie [SFS]; tmic-list@eskimo.com; [EMAIL PROTECTED]Subject: RE: [TMIC] Not Devic's (MS)- then what??? Same here; inflammation and my fluid pressure was high (but I'm not sure what that means). Bev From: "Butcher, Bernie [SFS]" [EMAIL PROTECTED]To: "Beverly Barr" [EMAIL PROTECTED], tmic-list@eskimo.com, [EMAIL PROTECTED]Subject: RE: [TMIC] Not Devic's (MS)- then what???Date: Wed, 20 Sep 2006 08:04:49 -0400 The only thing they found from my spinal tap was evidence of inflammation (?) BERNARD BUTCHER From: Beverly Barr [mailto:[EMAIL PROTECTED] Sent: Tuesday, September 19, 2006 6:52 PMTo: tmic-list@eskimo.com; [EMAIL PROTECTED]Subject: [TMIC] Not Devic's (MS)- then what??? Last week I had the spinal tap and today I found out that the results were negative. Negative for MS I'm guessing. I have to wait until next week Tuesday in order to have a visit and sit down with my Dr. What does this all mean? That I most likely have Devic's and definately not MS?I need some answers so that I do not get overly weighed downed... I went to Cancun with my sister a two weeks ago. I left children and husband behind...I really needed to mope and think. My sister has Lupus and she was quite helpful on what to do when you are exhausted, tired or just not in the right frame of mind. While I was there, I believe I was very much affected by the hotweather. I was sick for two days, back, neck painand I even spiked a fever overnight and woke up with a fever blister on my lip. I had no appetite and I was a just wanting to sleep. I took some of my sister's 600mg ibuprofen for comfort. I typically, love and enjoy the warm weather. I love the feel of the sun on me and I just was a little disturbed that i did not feel well and was so drained on my vacation. Does the warm weather affect persons with Devic's in this mannter?? - I just received a call from my dr. that my antibody test from the Mayo Clinic was negative for Devic's disease. He previously ruled out MS based on my MRI scans, what then is plaguing me?It is possible to have Devic and have a negative testing for the particular antibody?Bev From: [EMAIL PROTECTED]To: [EMAIL PROTECTED], tmic-list@eskimo.comSubject: Re: [TMIC] subscribeDate: Thu, 31 Aug 2006 23:02:30 EDT You can correspond with all of the group by just writing using the original address that you used that I replied to. In case you do not still have it, the address is listed above along with yours. Ann in Virginia
Re: [TMIC] Lesion at C5
I just went through a few weeks of dry mouth and swallowing difficulties and also some slurring of speech which turned out to be an MS attack. This time the lesion was in the brain so I made the jump from recurrent TM and probable MS to RTM and MS. But it was really annoying to drink water all the time and still feel like it was never enough. My last TM attack left a spinal cord lesion at the C1 Medulla so swallowing is an issue whenever I get over heated or tired. But this was so bizarre and long lasting. My point is that it might just be the TM acting up. Sandy in blustery Wisconsin - Original Message - From: Sharon Marsden To: L T CHERPESKI ; [EMAIL PROTECTED] Cc: TM List Sent: Tuesday, September 19, 2006 1:36 PM Subject: Re: [TMIC] Lesion at C5 I'm interested in the Sjogrens. How was it diagnosed? I had blood work several months ago and it was negative. I have developed extremely dry mouth. I've had severely dry eyes since I was 25. My doc said Sjogrens doesn't always show up on the blood tests. Sharon Sharon --from Arizona TM 1997 to MS 1998 It's not easy taking my problems one at a time when they refuse to get in line. ~Ashleigh Brilliant http://health.groups.yahoo.com/group/MSersLife/ - Original Message From: L T CHERPESKI [EMAIL PROTECTED]To: [EMAIL PROTECTED]Cc: TM List TMIC-list@eskimo.comSent: Friday, September 15, 2006 10:39:32 PMSubject: Re: [TMIC] Lesion at C5 Hi Michelle and Patti, And Heather - what a great memory you have! I actually did live in Bothell for 28 years, until the middle of May of this year we moved to Eagle, Idaho (outside of Boise) Most of our family is here. I was forced (due to TM)to retire from my job of 31 yearsinsuring show horses. Now my husband is retired also. Welcome Michelle - I am very sorry to hear you are having such a hard time right now. It always amazes me that we can have lesions in the same areas and yet have such different symptoms. I have not had problems with my arms or hands - except when my Sjogrens rears its ugly head and then all of my joints hurt. And I certainly have not had a swollen tongue and facial paralysis. I have however had severe shooting pains from my lesions C4-6 up the right side of my head and even over the head clear to my forehead. Docs have no clue - except possibly a nerve in the lesion? 4+ years and have never had any of this. Very painful, and still no answers. Michelle - I hope you have or are going to check with your doc regarding your symptoms. And yes Patti is right on - TM does bring us to a life of reality. I have been reflecting lately - for me, not necessarily a good thing - my life has changed so drastically. I just have to keep telling myself - chin up, it could be worse. (By the way, what part of Bothell do you live in? I loved it there.) God Bless you and all of our fellow TMers hugs Linda (now Eagle, ID) - Original Message - From: [EMAIL PROTECTED] To: tmic-list-at-eskimo.com Sent: Friday, September 15, 2006 12:47 PM Subject: [TMIC] Lesion at C5 Hi MichellePlease forgive us for getting on the print and type tangent. It seems we get off track when the group is quiet and no one is discussing an urgent TM need.I understand your frustration with the numbness in your hands because my lesion at C4-C6 causes me the same problems. I type with my thumbs and index fingers, my typing is horrid and it takes me forever to type a post. Two weeks before TM struck I googled MS because I kept dropping things and I knew it could be a symptom of MS. I read that MS usually strikes before age 50 and since I was 53 I hit the exit button and breathed a sigh of relief! Duh! I can never go back to being that nieve' again - TM brings us to a life of reality doesn't it.It's good to learn that your MRI didn't show any brain lesions. It sounds like something might be going on (swollen tongue and facial paralysis), but maybe the future MS drugs will stop future lesions. Heather was right about Linda having lived in Bothel Wa, but she moved to another state a few months ago. God bless you Patti - Michigan(and I pray that he heals me and all of you out there)
Re: [TMIC] Lesion at C5
I had the problem in early July and went in to the neuro. The MRI was done at the end of July and showed a new brain lesion. My dry mouth has subsided and also my swallowing problems.It was more like an intense tingling than pain really. You know that good old TM tingling that some times ramps up to be like burning and pain and other times seems to slow downto just pins and needles. That was a veryweird feeling on thetongue and lips. The new brain lesion was in a different part of the brain this time. Sandy - I am going to say again that it is blustery here in Wisconsin today. I like that word blustery and no one but Winnie the Pooh ever really used it well. - Original Message - From: Sharon Marsden To: Sandy Heidel ; L T CHERPESKI ; [EMAIL PROTECTED] Cc: TM List Sent: Tuesday, September 19, 2006 2:05 PM Subject: Re: [TMIC] Lesion at C5 Did your doc say the dry mouth was MS related? I have had dry mouth now for about 8 months. My tongue hurts at times from the dryness. I've had swallowing problems off and on for 8 years and often slur my speech. When was the new MRI done that showed the brain lesion? Sharon --from Arizona TM 1997 to MS 1998 It's not easy taking my problems one at a time when they refuse to get in line. ~Ashleigh Brilliant http://health.groups.yahoo.com/group/MSersLife/ - Original Message From: Sandy Heidel [EMAIL PROTECTED]To: Sharon Marsden [EMAIL PROTECTED]; L T CHERPESKI [EMAIL PROTECTED]; [EMAIL PROTECTED]Cc: TM List TMIC-list@eskimo.comSent: Tuesday, September 19, 2006 11:42:23 AMSubject: Re: [TMIC] Lesion at C5 I just went through a few weeks of dry mouth and swallowing difficulties and also some slurring of speech which turned out to be an MS attack. This time the lesion was in the brain so I made the jump from recurrent TM and probable MS to RTM and MS. But it was really annoying to drink water all the time and still feel like it was never enough. My last TM attack left a spinal cord lesion at the C1 Medulla so swallowing is an issue whenever I get over heated or tired. But this was so bizarre and long lasting. My point is that it might just be the TM acting up. Sandy in blustery Wisconsin - Original Message - From: Sharon Marsden To: L T CHERPESKI ; [EMAIL PROTECTED] Cc: TM List Sent: Tuesday, September 19, 2006 1:36 PM Subject: Re: [TMIC] Lesion at C5 I'm interested in the Sjogrens. How was it diagnosed? I had blood work several months ago and it was negative. I have developed extremely dry mouth. I've had severely dry eyes since I was 25. My doc said Sjogrens doesn't always show up on the blood tests. Sharon Sharon --from Arizona TM 1997 to MS 1998 It's not easy taking my problems one at a time when they refuse to get in line. ~Ashleigh Brilliant http://health.groups.yahoo.com/group/MSersLife/ - Original Message From: L T CHERPESKI [EMAIL PROTECTED]To: [EMAIL PROTECTED]Cc: TM List TMIC-list@eskimo.comSent: Friday, September 15, 2006 10:39:32 PMSubject: Re: [TMIC] Lesion at C5 Hi Michelle and Patti, And Heather - what a great memory you have! I actually did live in Bothell for 28 years, until the middle of May of this year we moved to Eagle, Idaho (outside of Boise) Most of our family is here. I was forced (due to TM)to retire from my job of 31 yearsinsuring show horses. Now my husband is retired also. Welcome Michelle - I am very sorry to hear you are having such a hard time right now. It always amazes me that we can have lesions in the same areas and yet have such different symptoms. I have not had problems with my arms or hands - except when my Sjogrens rears its ugly head and then all of my joints hurt. And I certainly have not had a swollen tongue and facial paralysis. I have however had severe shooting pains from my lesions C4-6 up the right side of my head and even over the head clear to my forehead. Docs have no clue - except possibly a nerve in the lesion? 4+ years and have never had any of this. Very painful, and still no answers. Michelle - I hope you have or are going to check with your doc regarding your symptoms. And yes Patti is right on - TM does bring us to a life of reality. I have been reflecting lately - for me, not necessarily a good thing - my life has changed so drastically. I just have to keep telling myself - chin up, it could be worse. (By the way, what part of Bothell do you live in? I loved it there.) God Bless you and all of our fellow TMers hugs Linda (now Eagle, ID) - Original Message - From: [EMAIL PROTECTED] To: tmic
Re: [TMIC] p.s. Hard lessons to learn
Michelle, I was reading in an MS magazine today about financial assistance for follow-up MRIs. I was thinking you could contact them and see if they would pay for yours. Its the MS Association of America MRI Institute at 800-532-7667 ext 120 or [EMAIL PROTECTED]. I know you have TM and not MS but it was probably the MRI that made the diagnosis.When most of us go in for our first MRI its to see if we have MS and we wind up with a diagnosis of TM. Anyway, I thought you could give them a call and see if they would pay for your MRIs. They can be pretty pricey. Also the drug companies have programs for uninsured customers. Ask the nurses next time you go in. And if they cant help you I think Jim Lubin has a good reference list at the www.makoa.org site that lists all the drug company programs. Take care, Sandy - Original Message - From: Natalie Boyles To: [EMAIL PROTECTED] Cc: tmic-list-at-eskimo.com Sent: Friday, September 15, 2006 3:04 PM Subject: Re: [TMIC] p.s. Hard lessons to learn Hi Michelle, As you see we really are a nice group, all of us, and I am sorry about the other emails. Probably a bad pain day. When I became disabled I got help from my state government. I do not know if all states are the same, but in Pennsylvania there is a state department that I imagine one could say oversees insurance companies in the state. And, if you call them they will also help advice you about some of your options. I too went with BlueCross/Blue Shield as it seems they must insure anyone. Eventually, I went on disability and so now have Medicare and AARP for my supplemental insurance. I have lesions on my spine and brain, but the doctors cannot decide just what all is going on. Yesterday, I had another test for lymes and am hoping that may be part of my problem. Natalie Boyles On 9/15/06, [EMAIL PROTECTED] [EMAIL PROTECTED] wrote: I did a lot of searching for insurance companies after my 29 months of COBRA continuance ran out.My husband is also self employed, our insurance always came through my employment.See if your state has a Blue Cross/Blue Shield program.It was the insurance program that we chose for my husband, however, it does not have RX coverage.I was unable to find anything for him with RX coverage.No one understands the worries that this causes until they face it themselves.His doctor has given him drug samples and I just started buying one of his perscriptions from Canada.We were fully insured for 37 years and now we are asking for help. Patti Michigan [EMAIL PROTECTED] wrote: We also are not currently insurance carriers so this is obviously a HUGE stress for us!!We lost our insurance a year ago due to not having my husbands business organized with proper books and had no records to show the state our income causing us to loose our medial.So now we are in crisis mode and trying to find out if insurance companies cover preexisting conditions.And of course we will have to try and apply for any grievance programs for all the current accruing hospital and doctor bills.And life goes on.;-) Michelle Chavez Bothell, WA
Re: [TMIC] a milestone
You know what I have been thinking aboutI have seen these little bike engines that are gas or some are electric that fit on a standard bike. I have been thinking that maybe I could get one of those and ride my bike as far as I can and then it would take me back home. When I was a fit person preTM I was a mountain biking fool. I rode a minimum of 25 miles per day with longer rides even at least twice per week. So I really miss it. I was thinking that even if I only pedal for a portion of it the biking experience would still be MINE! Do a google search for bicycle engine and see what you think, Sandy - Original Message - From: Jaime [EMAIL PROTECTED] To: [EMAIL PROTECTED]; tmic-list-at-eskimo.com tmic-list@eskimo.com Sent: Tuesday, September 05, 2006 8:11 PM Subject: Re: [TMIC] a milestone my bike that I bought when I got TM is sitting in my dining room. I have not ridden it yet this summer. Maybe once. Its sturdy and sits up straight so no stress to my neck and arms. I will ride itsoon - Original Message - From: [EMAIL PROTECTED] To: tmic-list-at-eskimo.com tmic-list@eskimo.com Sent: Tuesday, September 05, 2006 12:28 PM Subject: [TMIC] a milestone I'm sitting at my computer resting from our perfect Labor Day weekend. I rode a bicycle for 3 to 4 minutes yesterday. Wow! It was a goal I set for myself and I was determined to do it. Bike riding was one of the enjoyments TM took from me. Sunday was the 3 yr anniversary of my last bike ride and I know my balance problems are in my torso and legs, not in my brain. I borrowed a small bike that allowed my feet to firmly touch the ground when sitting on the seat. I took a deep breath and started riding toward 4 people who thought I was totally nuts. I rode right past them with my head held high and a grin on my face. I felt like I was flying! I quit as soon as my muscles started cramping, but who knows what the future holds. I'm still soaring from that short ride. (I still use a cane.) Patti - Michigan
Re: [TMIC] DIAGNOSIS UPDATE
Hey Jeff, Welcome to the club. I got my Dx of my first brain lesion a week and a half ago. We need to develop a nick name for the TMers with brain lesions. Cuz we are staying! Sandy - Original Message - From: jeff bernier To: tmic-list@eskimo.com Sent: Friday, September 01, 2006 9:24 PM Subject: [TMIC] DIAGNOSIS UPDATE well friday,i got the dx ive been dreading.after 6 and a half years of being jerked around by doctors,insurance companies and being tossed out of one therapy unit to another because of lack of improvment,they found lesions on the brain that were not there before and i was dx with ms,the 2 letters i didnt want to hear,but its going to open a bunch of doors that were not open before as far as meds and treatment,but ive dealt with it this long.no since crying over spilled milk i guess. does anyone know some good net ms sites as far as groups go?,i still plan on staying on the tm site,but im just searching for info. jeff Stay in the know. Pulse on the new Yahoo.com. Check it out.
Re: [TMIC] neuro appt.-vent
Krissy, I think you and I are seeing the same guy! I thought I had mine figured out but just this week I got a call from him that made me furious. I had another MRI on 7/31. I called 4 times for results and no one would call me back. Then on Monday he finally calls and is very abrupt. He announces that I have my first brain lesion and that confirms the diagnosis of MS. He then says that it "doesn't change what we are doing" and tries to end the conversation. Drop bomb get off the phone quick does not work for me. So I say geez since the symptoms during my July attack were the same as my TM symptoms how did the lesion at the C1 look this time? No answer...his pager goes off and he says"I have to answer this page." No mention of I will check and call you back. In talking to the nurse yesterday I find that the report did notmention the cord lesions and also did not compare this MRI toprevious. Soshe asked to get thecomparison done this week.I now know that I must ask for this every time I have an MRI. This is one of those things that my common sense says should be routine. But alas...like I always say, "Common sense is not as common as it really ought to be." I also found out thatafter 7 years the hospital throws out an MRI!!! So my first MRI that showed TM in 1998 isgone! The 2001is still there for a while but then it too is gone. I cant believethey do this whenits a chronic condition. Mynurse saidshe has tried to change the policy but theywill not. I am getting the CD this go round so I can hang on to them myself fromnow on. Evidently even the CDs get tossed after 7 years! The other thing I wanted to tell you is that I try to direct the conversation when I am at the neuro's office by taking in notes. Sometimes two or three pages. I describe everything in detail and ask that they be put into my file. This gives us some topics to focus on and keeps me from forgetting to mention stuff. Plus I think my notes are more complete than his...in fact I know they are. I learned this from someone on the list a few years back and it has made a huge difference in how my appts go. Take care, Sandy in Wisconsin - Original Message - From: Krissy Z To: TMIC List Sent: Tuesday, August 22, 2006 7:50 PM Subject: Re: [TMIC] neuro appt.-vent well I had my 6 month neuro appt and you know I was very dismayed. I felt like he just rushed thru questions and testing my limbs, and I felt very rushed out of there. he said, see you in 6 mos, filled out my handicap placard form and sent me on my way. I did get to tell him things that were bothering me, but again I felt like he was rushing me or yes-ing meI needed him to know more things for my chart/his notes too for my SSD appeal. I did like this guy at first, because he was calm and caring in the hosp..but now, it's almost as if he sees no change or little change and can't do anything for me...tho he did say my MRI's had no change and there is no MS. Should i call him? He's so not a phone person and I am sure he will just say so, what did you want to ask me? what did you need to tell me? and then.."is that it?" like he always does. Do I invest in another one where hes *been with me* since day 1?Krissy 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~ Yahoo! Messenger with Voice. Make PC-to-Phone Calls to the US (and 30+ countries) for 2¢/min or less.
Re: [TMIC] Re: tmic-digest Digest V2006 #151
I think the seven year pitch is my hospital's policy. It may not be universal. I asked if I could come and get them and they said no. I can get a copy of the CD or a copy of the films at 8 bucks a sheet. But, the can gets the original. I am thinking I have to appeal to the hosp board of directors and see what I can do there. In my abundant spare time I do some art work that is fancied by the wife of the medical center director. I will be seeing her at a charity event where I will be contributing some work and she will undoubtedly be bidding. Her husband and I will have to chat a bit before the deal is done. Everything is negotiable isn't that what they say? I can let you have that for $100 bucks and a complete set of films of my spinal cord! Ya, that's the deal. Sandy - Original Message - From: [EMAIL PROTECTED] To: tmic-list@eskimo.com Sent: Wednesday, August 23, 2006 4:14 PM Subject: [TMIC] Re: tmic-digest Digest V2006 #151 I NEVER HEARD OF THROWING AWAY MRIS . MY HOSPITAL STILL HAS ALL OF MINE FROM 14 YEARS TO COMPARE THEM TO. IT MAKES NO SENSE TO THROW THEM AWAY WHEN THEY CAN BE OF SUCH A HELP. I AM GLAD MY HOSPITAL DOES NOT HAVE THAT POLICY. I THINK I WOULD ASK FOR MINE TO KEEP, THEY ARE YOURS AND YOU PAID FOR THEM SO YOU SHOULD BE ABLE TO SIGN THEM OUT. WOW I KNOW THAT NEUROS ARE THE MOST ABRUPT DOCTORS BUT SOME. I AM LUCKY I HAVE DOCTORS THAT HELP ME ESPECIALLY MY INTERNIST. HE SOLVES PROBLEMS FOR ME IF I CANNOT. ALL MY DOCTORS WORK CLOSELY ON CASES WHICH IS GOOD. COMMON SENSE WELL ALOT OF DOCTORS JUST DO NOT BOTHER WITH TAKING A PERSONAL INTERIST IN THEIR PATIENTS. SEEMS LIKE SOME JUST CARE ABOUT THE MONEY, I KNOW A FEW AND WOULD NOT SEND MY DOG TO. THE KEEPING A JOURNAL IS GOOD OF ANY CHANGE MADE, ALSO I TAKE NOTES OF QUESTIONS I WANT TO ASK I LEARNED THAT ALONG TIME AGO. I HOPE YOU GET SATISFACTION AND NOW YOUR LEFT HANGING WITH A MS DX WHAT A HORRIBLE THING FOR ANY DOCTOR TO DO. PAM
Re: [TMIC] Copaxen
I think it might be copaxone a MS drug that is given by daily injection?? Its not an interferon its another kind of drug. But I don't know more than that. Maybe an internet search. Sandy still having nice weather! - Original Message - From: Butcher, Bernie [SFS] To: Jim Lubin ; [EMAIL PROTECTED] ; tmic-list@eskimo.com Sent: Tuesday, August 22, 2006 1:40 PM Subject: [TMIC] Copaxen Anybody ever hear of a med called "Copaxen"?? BERNARD BUTCHER
Re: [TMIC] This I cant believe
Jim is absolutely right about the first stem cell bill killed in the house. Thosewho voted against that billshould be ashamed of themselves.I also know that there are some forms of stem cell research that DON'T GET PRESS or any amount of discussion. Take cord blood stem cells. Lets talk about that. How much chatter do we hear about the thousands of babies born each day whose life saving cells contained in the cord are discarded instead of being saved for research or better yet to cure that child of all kinds of nasty stuff as he/she grows. I am third generation MS and wonder what will happen to my only child who was born before there were methods to save the cord available. What about harvesting your own cells whichcan be grown and returned to you without rejection like other transplanted cells, tissue or organs. We know so very little in this country because we cant getpast the embryo discussion. Places that do research and treatment with stem cells sayvery little publicly for fear oftrouble.Even if they don't use embryonic cells. Truth be told, the cell types Jim described are just as promisingbut don't get the media attention they should. Let support the wide variety of stem cell research and stop fighting over the kind we all know is too controversial to fund with tax $$.Lets figure out what we have in common and move on that first. The rest will follow. I amcertain that all those whowant embryo research will get it done. And in a few years we can all decide whichkind of transplant we want. Wouldn'tthat be a better discussion to have? Sandy who is thinking this is the last time she is going to write on this subject. - Original Message - From: Jim Lubin To: [EMAIL PROTECTED] ; tmic-list@eskimo.com Sent: Sunday, July 23, 2006 11:51 AM Subject: Re: [TMIC] This I cant believe Not all stem cell research is the same. I am all for stem cell research that does not involve taking (what I consider) another life to improve my life. I will not do whatever it takes to make life better. It's just like organ donation, I would not want someone killed for me to receive a transplant. Removing stem cells from an embryo kills the embryo. You are not removing stem cells from something that has already died. Since there are other sources of stem cells that do not involve the purposeful taking of a life, that research SHOULD be pursued. Are you aware that there were 2 bills that were going through Congress? The Alternative Pluripotent Stem Cell Therapies Enhancement Act pass unanimously by the Senate but was killed by the Democrats in the House for purely political reasons (I looked up the votes). They did not want President Bush to be able to sign this one so they could claim he is against all stem cell research when he vetoed the Stem Cell Research Enhancement Act. If it was such a simple right or wrong then Congress should have been easily able to gather enough votes to override the veto.At 10:52 PM 7/22/2006, [EMAIL PROTECTED] wrote: WOW I honestly cant believe anyone of you that is paralyzed or have LOVED ones that are can say they do NOT want stem cell research ... Babies are aborted every minute whether we agree with that at all ...It happens and will continue to happen No I do not believe in it but it still happens. Babies are born every minute all this and more ways I do not even know about can be used. PLEASE if their was any way to save my daughter I would DO ANYTHINGso no i do not understand you people that have a problem with any research that MIGHT help you or our LOVED ONES Jim Lubin [EMAIL PROTECTED]http://makoa.org/jim disAbility Resources: http://www.makoa.orgPlease Help: Inkjet Toner Cartridge Recycling
Re: [TMIC] Questing and Rambling
Yes, this happens to me everytime I attend a party or fundraiser or any event that serves alcohol. I know there are people who think I am a hopeless drunk. But on the other hand the folks I go there to see know me. I generally say something smart like, remember I walked IN to the party like this or something like that. We should not have to explain to everyone or every stranger what the deal is. I always think if I just got that forehead tattoo that people would just read it and stop asking. At my age (twice yours) I really enjoy the question, What do you do for a living. to which I reply I don't work and from women I get, ooo that must be nice and I wish I did not have to work followed closely by You are so lucky. I generally reply, You have no idea. I try to laugh it all off but I agree with you its hard sometimes. Take care and live your life like nobody's watching. Works for me! Sandy - Original Message - From: Terry McLaughlin [EMAIL PROTECTED] To: Kevin Wolfthal [EMAIL PROTECTED] Cc: tmic-list@eskimo.com Sent: Saturday, July 22, 2006 12:47 AM Subject: [TMIC] Questing and Rambling I'll preface this by saying that I may be speaking to a limited audience since I am a college student and one of the walking wounded. Have any of you even been in a situation like this: You've had a couple of drinks, but nothing to put you in the intoxicated state, yet when you happen to get up to either get another drink, or go to the restroom, some a-hole makes a comment like woah buddy when you happen to stumble a little bit--even though the stumbling is not at all alcohol related? I've had this happen a few times and it really gets on my nerves that someone has to be a big mouth and make a scene about something they have no clue about. I stumble a little and take some time to get my balance when I stand up after sitting a long time, and I don't need to be reminded by someone about this fact. Drives me up a wall. Just needed to vent, and a bit tipsy at the moment if I might add. Have a great weekend everyone! -Terry
Re: [TMIC] Study shows spinal cord regeneration
Jim, Thanks for speaking for the other side so well. I always tell my state legislators that I am the last person that will be objective about this issue. But I think we have walked away from some pretty promising research because some folks want to put all their eggs in the embryo basket (pun intended). I think we have wasted some considerable time in this country not coming together on other sources of stem cells and research in those areas. Lets get off the embryo train and back to the broad spectrum of research I say and let the politics wait in the wings. We all have more in common on this issue than we think. Lets not let the pundits divide us in another election. Thanks again for all you do We love you Jim!!Sandy in Wisconsin where the dragonflies and labradors play. - Original Message - From: Jim Lubin To: Alan Junghans ; TM List Sent: Thursday, July 20, 2006 6:54 PM Subject: Re: [TMIC] Study shows spinal cord regeneration (I'm copying this from my replies on another list, so forgive me if it sounds like I'm rambling on)I've never thought of myself as part of the "Moral Majority" as you say (I am a Roman Catholic) but agree with president Bush on this and I will explain way.I do believe that a human egg and human sperm make a human being from the time they are joined, from that point the zygote contains all the 46 chromosomes need to be human. It's called an embryo after about 10 days. Being a human, it is entitled to protection to life from the Government. Therefore, the Government should not be funding the destruction of life for the purpose of research.Now your opinion of when a human is a human and entitled to protection obviously differs from mine and president Bush. You can decide for yourself when a human becomes a human that is entitled to protection. Some people thing after birth and not before. I'm against IVF treatments as well because it creates extra embryos in the process, but since they exist then keep them on life support (i.e. frozen) indefinitely. They are not something that should be killed (i.e. by removing stem cells) to possibly make another persons life better. I have a moral problem with taking one life to improve another persons life.As for using those extra embryos in research for the possible benefit of others, just because they are going to be destroyed anyway, following that reasoning, here's my problem with that. A person with a traumatic brain injury or in a coma being kept alive on ventilator will never be completely healed and will die without the life-support, so why not harvest their body parts to improve someone else's life? I see both equally wrong. The Nazi's conducted medical research on the people they were going to kill anyway. I see it as the same.Embryos left over from IVF are not the only source for stem cells. (2006.06.27: Research on Alternative Sources of Pluripotent Stem Cells, http://www.hhs.gov/asl/testify/t060627.html )So I feel those sources should pursued since there would be no moral or ethical concerns. I'm all for scientific advancement that does not conflict with my morals and ethics. Now, if scientist want to use stem cells derived from a human egg and another cell, somatic cell nuclear transfer (SCNT), I don't consider that a human and have no problem with research on those stem cells. At 12:34 PM 7/20/2006, Alan Junghans wrote: I was a little vague in the "Kill stem cell research", but he sure is holding back progress. If he had TM or Parkinsons OR ANYTHING that could benefit, he might tell all of the "Moral Majority" to piss off and do the right thing. I didn't want to admit it before, but he is truly a friggin idiot who is clueless. - Original Message - From: Krissy Z To: Alan Junghans ; TM List ; TMA-New-England Sent: Thursday, July 20, 2006 11:42 AM Subject: Re: [TMIC] Study shows spinal cord regeneration i never voted for him...he repulses me...and to veto this stem cell reseach. something so important to folks like all of us,his brain is not just wired to what priorities should be. what goes around Jim Lubin [EMAIL PROTECTED]http://makoa.org/jim disAbility Resources: http://www.makoa.orgPlease Help: Inkjet Toner Cartridge Recycling
Re: [TMIC] Re: An MS dx and insurance
My insurance is set to change at the beginning of next year. They are changing my copay from $20 per month to $400! I take Rebif and that is also around the $1800 rate. I am trying to see what other options I have . Tysabri is back but my neruo does not want me to take it until its been on the market for a while. I had one dose of Tysabri before it was yanked off the market. I really liked it and was happy to not have to do the shots. No side effects. It was wonderful. I had a small attack the week before the 4th. It was not as intense or damaging as the my first two attacks so I think the Rebif is doing its job. But $400 a month is going to make it hard for me to stay on it at least at the 3 times per week dose. I want to be reincarnated as an insurance company so I can rule the world! Sandy in hot and humid Wisconsin. - Original Message - From: BobbyJim To: [EMAIL PROTECTED] ; tmic-list@eskimo.com Sent: Wednesday, July 19, 2006 7:39 PM Subject: [TMIC] Re: An MS dx and insurance Well, we've had no problems with insurance, even tho CIGNA is a bit picky and now and then denies us till we provide them with a letter of necessity. Par for the course, says aye. Me missus has been on Avonex since March 1999. Can you imagine the co$t.. Right now, they want almost 1,800 bucks per box of four injections. What greedy bastards. Bobberino, melting in Elvisland From: [EMAIL PROTECTED] To: tmic-list@eskimo.com Sent: Wednesday, July 19, 2006 4:28 PM Subject: [TMIC] Re: tmic-digest Digest V2006 #98 My 2 cents. I was told that a lot of doctors don't want to make the diagnosis of MS until they are sure for insurance purposes it is harder to get insurance if you have MS I don't know for sure but this is what I am told by someone diagnosed with TM and years later MS she said don't push the diagnosis for MS as it's not good.
Re: [TMIC] New Neurologist
The current thinking in the MS world is that we do have what they call "silent attacks" that occur between those that we do notice. I guess this came about because some MS patients were having follow up MRIs and they were noticing new/old lesions. That is that they had lesions they had not documented on MRI previously but they were not necessarily new or active. I guess they occur between noticeable attacks. I would thinkthat these silent attacks are nothing new in MS but more an artifact of the MRI. We know more about how MS progresses because of the test. But the disease is still the same as it has always been. My neuro says I only need to do a follow-up MRI when I have new symptoms and feel like I am having a new attack. But the MS folks now think that you can be having damage that you do not even notice so regular follow-up MRIs may be a benefit. I think it boils down to one of those TM/MS differences/similarities that we like to discuss from time to time. Sandy in sunny Wisconsin where the rain has finally stopped. - Original Message - From: [EMAIL PROTECTED] To: TMIC List Sent: Sunday, June 25, 2006 9:08 PM Subject: [TMIC] New Neurologist I was just wondering about your thoughts Two years ago I was "hit" with TM (C-3), spent a couple days in the hospital, refused steroids, left with a cane and went back to work a month later, just living with the stiffness, numbness, burning, fatigue, etc. The two neuorologists who saw me anddiagnosed menever mentioned a follow-up so I just went to my GP. Upon recommendation by some on this list to keep in touch with a newologoist, and wishing for something for the fatigue, I went to a neurologist who said I should have had follow-ups by a neuro and we shouldn't just assume my TM is idiopathic but could be a result of MS ( my initial MRI showed no brain lesions). He said I could have gotten more "small" lesions with no further symptoms. If so, these small lesions could some day come together and, his quote, "all hell break loose". He wouldn't prescribe anything long term for fatigue because he wanted more MRIs. So, tomorrow I will have them. I almost wish I hadn't gone to him as I don't think I have gotten "worse" but learned to live with the symptoms. Just not sure I agree with his reasoning; haven't really seen this view from this list. Any thoughts? Gary in Michigan
[TMIC] Kerr on the news
I saw the CBS news last night and see that somebody posted the link today. I also saw Dr Kerr on CNN today and he mentioned TM as one of the diseases that could be helped by his research. They tend to repeat their news so you might be able to catch it again tonight. Or on their web. Also it was on Good Morning America but I think their Dr Tim Johnson did a lousy job and was rather poo pooing the breakthrough. Anyway, lets celebrate the day...and lucky for us its the longest day of the year! Sandy in hot and humid Wisconsin...where the fox and the Labradors play.
[TMIC] donation to charity online
Right now you can go to this website and click on a charity and Pontiac will donate to that cause. I selected the Chris Reeve foundation. http://www.pontiac.com/apprentice It took a while to connect and I think they were swamped. But now its up and running. I understand they will donate $500,000 and a charity will also receive a car to auction. I did not see the TM Assoc on the list so I went with the Christopher Reeve foundation. Sandy
[TMIC] patients with incontinence treated with own stem cells
Title: JS Online:Stem cells may help incontinence This treatment does not use embryonic stem cells so there is no reason to have that whole debate again. This is just plain old good news and good medicine. Sandy in sunny Wisconsin who bagged a nice big turkey last week! www.jsonline.com | Return to regular view Original Story URL:http://www.jsonline.com/story/index.aspx?id=425920 Stem cells may help incontinence Researchers calling treatment a cure By JOHN FAUBER[EMAIL PROTECTED] Posted: May 21, 2006 Doctors say they were able to cure urinary incontinence in the vast majority of patients who were treated with injections of their own stem cells. Advertisement The finding, which was presented Sunday, is the latest accomplishment in a promising area of research: using adult stem cells derived from patients' own muscle tissue to treat a troubling condition that affects more than 15 million Americans. The researchers described the treatment as a cure, meaning that the patients did not need to wear pads after they were treated. "It's highly effective, and it's much more effective than we previously thought," said lead author Hannes Strasser. "If somebody had told me it would have worked so well four years ago, I would not have believed it." Some of the first patients to undergo the technique remained continent four years after the treatment, said Strasser, an associate professor of urology at the Medical University of Innsbruck in Austria. The results presented Sunday involved 186 men and women ages 36 to 85. The study involved about twice as many women as men. One year after the treatment, 153 of all of those treated did not need to wear pads, Strasser said. In addition to curing incontinence, the patients also had a dramatically improved quality of life, he said. There were no side effects, though a later patient, one of 270 who now have undergone the therapy, suffered a perforation of the urethra during the treatment. Study shows promising results The research was presented at the American Urological Association's annual meeting in Atlanta. "It's a great idea," said Elliott Silbar, a urologist with Aurora St. Luke's Medical Center who attended the presentation. "They are trying to replace healthy cells into an area with unhealthy tissue. Theoretically, it makes a lot of sense." What's still needed, Silbar said, are studies involving head-to-head comparisons between the adult stem cell treatment and other types of injectable urinary incontinence treatments. One potential advantage to the stem cell treatment is the possibility that it may need to be done only once, compared with the need for re-treatment with other injectable therapies, he said. Strasser said the stem cell treatment costs about $16,000. The treatment involves harvesting muscle cells taken from a biopsy of the patient's upper arm. Those cells are grown in a laboratory for seven weeks, and a small amount of collagen is mixed in. "What's nice is they are using the patient's own cells," said Silbar, who was not involved in the study. "You are not going to have any problem with rejection or diseases. It's totally biocompatible." What is not known is whether the new cells become functioning muscle, as is theorized, or whether the injections are just providing bulk, as is the case with other treatments, Silbar said. The extracted cells become both myoblasts, or the precursor to muscle cells, and fibroblasts, a type of connective tissue cell. The fibroblasts were injected into the urethra, the canal that carries urine out of the bladder. The myoblasts were injected into the rhabdosphincter, a ring of muscle around the urethra that acts as a valve. The treatment did not involve embryonic stem cells, which generally are derived from 5-day-old embryos. More testing needed The research has created a buzz at the meeting, said Michael Guralnick, an assistant professor of urology at the Medical College of Wisconsin. "It almost sounds too good to be true," said Guralnick, who also attended the presentation. One advantage of the treatment is that a patient's own muscle cells can become a potential permanent rebuilding source of the sphincter muscle, Guralnick said. He said the cure rate cited by researchers of more 80% is about twice that of other injectable treatments. Guralnick said the treatment still needs to be subjected to more rigorous scientific testing, and it's likely to be a few years before it is available in the United States. "This could really be a better alternative, but it's still in its infancy," he said. The injections were done using a technique known as transurethral ultrasound. "We can inject both types of cells very precisely," Strasser said. Imaging showed that the thickness of the urethra and rhabdosphincter were increased and the contracting ability of the rhabdosphincter was improved, he said. "It's much
Re: [TMIC] Dr. Brian Weinshenker/Mayo
It was me Grace. I will see if I can dig it up again. Sandy - Original Message - From: Grace To: tmic-list@eskimo.com Sent: Tuesday, May 09, 2006 11:34 AM Subject: [TMIC] Dr. Brian Weinshenker/Mayo Some time ago I was given Dr. Weinshenker's email address by someone here at the list,but have lost it. Does anyone out there have it? I am hoping that he has a colleague in the Chicago area who can treat my Devic's. Thus far, I have found no one who is up to snuff. Grace
Re: [TMIC] Re: Montel Show (was: Oprah show)
You know, I have been mulling this today. One of the things that sticks in my mind is that Montel raises the issue of the small number of reported MS cases. I think he criticized the number of like 350,000 in the US. Its a number like that that he disputes as being lower than reality. Anyway, he maintains the federal govt reports a low number so it does not have to prioritize MS for funding and research. My point here is the we are under the "MS umbrella" according to Dr. Brian Weinshenker of Mayo Clinic and presenter at the TM symposiums. It was Weinshenker who did my second opinion and he does a very good job describing TM and other neuro syndromes and diseases that parallel MS. If Montel did a show that recognized all the MS 'like' diseases people would see the whole spectrum. I think we can all benefit from the same research. Its more about the similarities than differences. In the old days we would probably all have an MS diagnosis. Now with technology and all we have more specific names. Sandy in Sunny Wisconsinuntil tomorrow of course when I will be in the woods chasing turkeysin the rain. - Original Message - From: Jim Lubin To: C E ; [EMAIL PROTECTED] ; tmic-list@eskimo.com Sent: Tuesday, May 02, 2006 2:59 PM Subject: [TMIC] Re: Montel Show (was: Oprah show) Dr. Kaplin is on the board of medical advisors to the Transverse Myelitis Association (TMA) and the Montel Williams MS Foundation. Maybe he could do something to get Montel to do a show on TM.At 09:43 AM 5/2/2006, C E wrote: I truly believe there is strength in numbers. So if we set a target date, and ask as many as possible to write to Montel during that time frame, perhaps that would be more beneficial than a few straggled throughout the year.Carol in Culver, IN From: "Alan Junghans" [EMAIL PROTECTED]Reply-To: "Alan Junghans" [EMAIL PROTECTED]To: tmic-list@eskimo.comSubject: Re: [SPAM] [TMIC] Oprah showDate: Tue, 2 May 2006 07:22:57 -0500That is an excellent idea!!! If he will put a dog on that lost it's front legs and walks in the upright position, I would HOPE that he would give us a shot. Let me know if anyone has tried.Alan in the ALREADY hot and muggy Houston, TX area.. - Original Message - From: [EMAIL PROTECTED] To: tmic-list@eskimo.com Sent: Tuesday, May 02, 2006 6:25 AM Subject: [SPAM] [TMIC] Oprah show Hi, Since Oprah has ignored all requests sent in the past,has anyone approached the Montel Williams show?Since he has MS,maybe he would be interested in having a show on TM.Just a thought. Cheryl in cloudy Easthampton,Mass.-- Talk is cheap. Use Yahoo! Messenger to make PC-to-Phone calls. Great rates starting at 1¢/min. Jim Lubin [EMAIL PROTECTED]http://makoa.org/jim disAbility Resources: http://www.makoa.orgPlease Help: Inkjet Toner Cartridge Recycling
Re: [TMIC]An Article From www.aarp.org re M. Graves
He was in a Target TV ad recently too. They were highlighting their various designers. I love his stuff. I also remember an article about him early on in his TM where he described being in the hospital and not being able to turn on and off the light, open/close the blinds, negotiate the bathroom, etc. He was frustrated that a facility that was supposed to be a healing place could be so hostile to the very residents it was trying to help. I would expect a designer to think like that and find a solution. Maybe another pitch to Oprah and the like to have Graves and our own Jim Lubin on. Sandy in Wisconsin where everything but the Labradors is greening up this Spring. - Original Message - From: [EMAIL PROTECTED] To: TMIC-LIST@eskimo.com Sent: Monday, May 01, 2006 12:11 AM Subject: [TMIC]An Article From www.aarp.org re M. Graves Hildred thought you might be interested in this page on AARP's Web site: --- Message from Hildred Do yall remember this guy from a few years ago? He got TM while in Germany and was sent to the same rehab facility Chris Reeves had been in. I wondered what had happened to him! - Please click the address below, or copy and paste the URL into your Web browser: http://www.aarp.org/learntech/lifelong/the_unstoppable_genius_of_michael_graves.html - AARP's Web site provides the tools, information, and opportunities to help you get the most out of life. Discover the latest AARP member benefits, discounts and special offers - including savings on online services. http://www.aarp.org/
Re: [TMIC] DRUG choices-Help?
I have been hesitant about joining in on this discussion since my experience with Nerontin was so brief. But it was not good. I was only on it for 10 days. During that 10 day period I was ramping up the dose as recommended. In fact I slowed it down a bit since I was having such a bad time of it. It made me feel drunk or stoned even before I got to the full dose. It did nothing to reduce or remove the pain in my hands which is why I tried it. And the worst thing is it made me dull and also took away my memory. Luckily I wrote down all the things that were happening. But as for recalling them they were lost. They were lost in fact DURING the time I was on the drug. On Friday I could not remember anything that happened on Thursday and before that either. So it was NOT a good experience for me. I have no advice for you just this experience to share. Sandy - Original Message - From: Krissy Z To: TM List Sent: Friday, February 24, 2006 1:20 PM Subject: [TMIC] DRUG choices-Help? OK, I have read about neurontin, requip, and lyrica. It is true the neurontin seems scary, since it's mostly a seizure med. I take a low dosage and it does seem to lessen my sensations at night and help me sleep, tho not all the way thru any more. Requip, I am not sure of yet, It sounds promising, tho I don't have true restless legs, just numb, tingly, burning,the vibration/adrenaline feeling. The Lyrica, is a diabetic med? also for seizures? So I ask, if I am not prone to diabetes or seizures, isn't there something to take milder/safer for these nerve sensations that keep you awake at night? ~Brightest of Blessings~ ~Krissy ~ http://www.geocities.com/tmladyk/home.html ~I'm In pretty Good Shape For the Shape I am in~ ·.»§« ·´¯`·.,¸*¸,.·´¯`·.»§«·.»§« ·´May today there be peace within you. May you trust that you are exactly where you want to be.Life is not measured by how many breaths we take, but by the moments that take our breath away.Destiny is no matter of chance. It is a matter of ch! oice. It is not a thing to be waited for, it is a thing to be achieved. ·.»§« ·´¯`·.,¸*¸,.·´¯`·.»§«·.»§« ·´¯`·.,¸*¸,.·´¯`·.»§«·. Yahoo! MailBring photos to life! New PhotoMail makes sharing a breeze.
Re: [TMIC] TM and MS
I used this for about two years beforeI made the switch to rebif another MS drug. Rebif was not yet approved in the US so I started on the betaseron until it was. But towards the end of my time on the betaseron they changed their formula so the drug no longer needed refrigeration. Once they did that I started having terrible sight reactions again. I had them at the beginning too but they tapered off. Once the new formula was in place they got very bad again. So I was happy to make the change to the rebif. The only difference is the rebif stings when you take it. The beta did not. But you can get a Rx for some cream that numbs the skin. I generally don't have any sensation at the shot sight but every once in a while I hit a "live nerve" and Yowww that sucker burns. Also the drug company will tell you to use an ice pack before and after the shot (either beta or rebif). But if you use a hot pack the sight reactions are smaller, the pain is less, and the drug is absorbed faster. This is what the drug company "experts" have learned from real live patients like us. So skip the ice and use a hot pack. I use a sock filled with rice in the micro for a minute or two. Take care. Your Dad is lucky to have you looking out for him, Sandy in Wisconsin where snow actually fell like it was promised but my husband still bought the wrong lottery tickets! - Original Message - From: neda fotouhie To: tmic-list@eskimo.com Sent: Friday, February 17, 2006 2:09 AM Subject: [TMIC] TM and MS Hi My father's symptoms become worse and doctors say his TM may turn into MS. He has no lesions in his brain.They prescriped Betafron/Betaseron. It is a medicine for Ms. I want to know if any of you use this drug and do you think is it possible without having lesions in brain one have MS? Yahoo! MailUse Photomail to share photos without annoying attachments.
