[TMIC] prayer
Hey all: I hope this goes through. Have been able to receive, but not send anything for a couple of weeks, and yes, Jude is on my prayer list! Cora
Re: [TMIC] leg stiffness
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] OT. Ice storm in Oklahoma
Hey, gang, we in Eastern OK have also missed the ice. Well, gee whiz, we've already had it twice. We are more than glad to miss out this time. Cora, in the rain Sent from my BlackBerry® wireless handheld -Original Message- From: Larry Throne [EMAIL PROTECTED] Date: Tue, 11 Dec 2007 09:38:25 To:tmic-list@eskimo.com Subject: [TMIC] OT. Ice storm in Oklahoma I just thought I'd drop a note and let you all know I'm Okay. We didn't get the ice most of the state got and still have electricity. So far there are over 500,000 without eletricity in the state. I haven't heard from Cora yet but I'll try to catch her later today. Larry in Oklahoma where it is raining again.
[TMIC] Happy, happy Birthdays
Here's to the November Babies: Have your birthday and your cake too! Ella, Jeff , Gina , Margaret Monson , Diane , Marie, Kevin, Lauren Bresse, Sandra, Becky, Drema, Cossy, Pearl Bernocchi, Judy Hoops, Gunny, Jack McMillan, and Louise Flagg From Cora in Oklahoma!
Re: [TMIC] ozone
When we had a house fire and they wanted to ozone treat our furniture for about a thousand dollars--I told my family to put it out in the sunshine for a few days--that's ozone; No? It worked: no smoke or other bad smells in the couch and chairs! course, that's not what ozone therapy is for people, but makes one think. Cora Hi Again Thank you all for the info on ozone therapy. I am NOT going to try it but if my friend does I will let you know what happens to her. Tobe Brooklyn NY - TV dinner still cooling? Check out Tonight's Picks on Yahoo! TV.
Re: [TMIC] Cold Spots
Barbara, I would hug everyone if I could. This is so great. No one (except this bunch) knows how disconcerting it is to be leaking, voiding, urinating all the time, even if I do have enough pads on to keep it from leaking to outer clothes. Also, with all that padding, how much is it affecting my gait? Walking with mostly numb feet is no easy task, as you all know. I guess that's what is so truly enjoyable about horseback riding--he has full function of his legs-all 4 of them, and I get to experience that in a way. The spasms in the worst affected muscles in my legs and ankles keep them very stiff. The massage therapist is working very hard on getting some relaxation from those muscles. I'd hate to think how my feet would be curled down if she hadn't been working on my legs weekly! Now I just have to get my stamina back after having to stay quiet for 2 months. Buck up, gang--technology is definitely worth it!Cora Hello Cora, You are just the great success story! I am just so thrilled for you! Thanks so much for sharing and giving hope to so many. Hugs, Barbara A ** See what's free at http://www.aol.com.
Re: [TMIC] Cold Spots
Hey: Diathermy is the one thing I cannot have since the implanting of my Interstim (neurostimulation device). I got a medical ID tag to wear to warn of the presence of the device and that diathermy is not good for me--or more accurately, nnot good for the device. BTW, the company representative that talked to me also said that some great things were happening for some people who took detrol/ditropan like drugs while on interstim therapy. I had some left, so I tried it, and have been totally continent for 3 days and nights. and it doesn't take much. Cora I use MIRE / Anodyne Therapy 3 times a week that does help me, but we have now heard of Diathermy that could be better. Diathermy: The therapeutic generation of local heat in body tissues by high-frequency electromagnetic currents. It looks like the MIRE is another option to Diathermy for people that do have metal in their body. Which I don't have. There should be no reason, that Diathermy could had helped me. What is Diathermy: http://www.answers.com/topic/diathermy Diathermy Option Clinically Proven Infrared Therapy Effective for Neuropathy Wounds www.anodynetherapy.com Diathermy Mettler Diathermy Units Discounted. Compare Our Prices. All Models. www.Med1Online.com [EMAIL PROTECTED] wrote: Hello everyone, My name is Kristy Matheson I am from Tennessee. Im new to this so bare with me. I was just wondering if anyone has ever experienced cold spots on your legs or arms? I have had TM for 5 years now, In the past two weeks my feet get cold (really cold) and it will travel up to my knees, I also get it in my arms but not as much as in my legs Also during this my symptoms have multiplied. I would appreciate any input. Thankyou Kristy M
[TMIC] birthdays
Ah! the Spring Babies! Have happy days and celebrations on your special day! I love having birthdays---it's so much better than the alternative. Happy birthday: Linda Garrett , Lynn - R I, Lynn, motherogs, Mary, Maureen , Maria , Jim , and Wendy From Cora in OK.
Re: Fw: [TMIC] News And Results!
My hubby is advacating the same thing. Worth a try for night time dryness, eh? Cora TO HELP CONTROL EXCESS URINE VOLUME AT NIGHT TIME, I DO NOT DRINK FLUIDS AFTER 6:00 P.M.. YOU MIGHT TRY THIS AND BE SURE YOU BLADDER IS EMPTY BEFORE RETIRING. BOB [Original Message] From: [EMAIL PROTECTED] To: tmic-list@eskimo.com Date: 3/26/2007 9:37:58 PM Subject: Re: Fw: [TMIC] News And Results! Jude: After getting off the foley catheter, I went to pads and diapers, and after about a year of that, and a visit to the urologist, got taught to self-cath, which I didn't have to do all the time, but if I get a UTI, retention is what happens and I can't void.The doctor says that my bladder is doing its job: when it fills to a certain point, it empties. Now that is without any control from my head--or whatever. If I want to wait, Forget it, cause it's doing its own thing. I'm not sure if the sacral nerve on the right side is so damaged that it couldn't respond, but the left was more okay, or what? I'm going to ask the doc on Friday. Yes, pads and pads, and more pads. I did find out that the Overnight strength Assurance underwear (aka diapers/pull ups) has an extra little elastic barrier inside each leg to keep leaks inside. I have only found that brand and that particular Night time product at Wal-Mart. I've added two or more Depends Boost pads to that to go most of the night. I have found that this works well both night and day to keep outer clothing dry. I does help one's dignity to know you're not dripping all over the place! LOL The stimulator was described to me as a pacemaker for the bladder. And the doc also said that a particular stimulation level (different for each patient, I'd guess) kind of removes all the background noise and allows the brain signal--to wait, or to release, etc.--to be heard and understood by the detrussor muscle--the bladder. This is one of those things that works or doesn't. And the only way to find out is to try. But the doc did say that among tm patients, those who can't go (retention) have the least improvement/success. I just know that today I wore panties again, and a pad, and I did have some leakage, but not like before! A gal my age probably usually wears a pad in case she sneezes, anyway LOL. Cora, still in Baltimore, but yearning for home. www.originaltouchofgilly.com http://www.oztion.com.au/myauctions/trinketgilly.aspx - Original Message - From: [EMAIL PROTECTED] To: [EMAIL PROTECTED] Sent: Saturday, March 24, 2007 3:09 PM Subject: Re: [TMIC] News And Results! Hi Cora, Gilly, please forward this to Cora for me...I don't have her address anymore. Thanks. Congratulations! Sounds like there is good news from your neck of the woods too. Isn't it weird the simple things that make us happy now? May I ask, because I missed something along the way,,,what did you have done and why? I mean, it sounds like you weren't self-cathing or something. I could never have gone more than three hours around the clock before I broke my legs and had this foley put in. Now they don't know if they can get me off of it. That's why I have a special interest in what you had done. I also have to do digital stimulation of my bowels to have any effect and sometimes , as you know, it is a whole lot of work and takes forever. I am super interested in what kind of stimulator you are talking about. I woke up from a nap today soaking wet with urine and it went through four pads. I have dressings on both sides of my butt for pressure sores and of course they got all wet and I had to take them off. Dave had gone to work already and I could not get my home nursing to come out and put new dressings on, so here I sit, in pain...waiting for Dave to get home. It sounds like whatever it is that you have had done is right up my alley! You hang in there lady and keep enjoying all of your newfound freedom. Maybe you'll beat your TM, a little bit at a time. Peace and Prayers, Jude AOL now offers free email to everyone. Find out more about what's free from AOL at AOL.com.
Re: [TMIC] Allen Rucker on tv
Yes, and he was on Talk of the Nation on National Public radio, and if you want to hear it, you can access it on www.npr.org It was on Feb 28th, I think: don't hold me to that. We played it on the computer just the other night, as my husband hadn't heard it, and I only heard the last five minutes of the broadcast. Cora Sandy wanted me to let everyone know that Allen Rucker will be on tv talking about TM in the following cities. SUNDAY, APRIL 1: WLS/ABC-7 Sunday Morning News, Chicago, 8:20 am. Feature piece with interviews with both Harold Ramis and me by local disability reporter, Karen Meyers. TUESDAY, APRIL 10: Life Times, KCET, Los Angeles, 6:30 pm. Feature piece by reporter Hena Cuevas. He will also be on an upcoming The Montel Williams Show, but we don't know the air date yet. Jim Lubin [EMAIL PROTECTED] http://makoa.org/jim disAbility Resources: http://www.makoa.org
Re: Fw: [TMIC] News And Results!
Jude: After getting off the foley catheter, I went to pads and diapers, and after about a year of that, and a visit to the urologist, got taught to self-cath, which I didn't have to do all the time, but if I get a UTI, retention is what happens and I can't void.The doctor says that my bladder is doing its job: when it fills to a certain point, it empties. Now that is without any control from my head--or whatever. If I want to wait, Forget it, cause it's doing its own thing. I'm not sure if the sacral nerve on the right side is so damaged that it couldn't respond, but the left was more okay, or what? I'm going to ask the doc on Friday. Yes, pads and pads, and more pads. I did find out that the Overnight strength Assurance underwear (aka diapers/pull ups) has an extra little elastic barrier inside each leg to keep leaks inside. I have only found that brand and that particular Night time product at Wal-Mart. I've added two or more Depends Boost pads to that to go most of the night. I have found that this works well both night and day to keep outer clothing dry. I does help one's dignity to know you're not dripping all over the place! LOL The stimulator was described to me as a pacemaker for the bladder. And the doc also said that a particular stimulation level (different for each patient, I'd guess) kind of removes all the background noise and allows the brain signal--to wait, or to release, etc.--to be heard and understood by the detrussor muscle--the bladder. This is one of those things that works or doesn't. And the only way to find out is to try. But the doc did say that among tm patients, those who can't go (retention) have the least improvement/success. I just know that today I wore panties again, and a pad, and I did have some leakage, but not like before! A gal my age probably usually wears a pad in case she sneezes, anyway LOL. Cora, still in Baltimore, but yearning for home. www.originaltouchofgilly.com http://www.oztion.com.au/myauctions/trinketgilly.aspx - Original Message - From: [EMAIL PROTECTED] To: [EMAIL PROTECTED] Sent: Saturday, March 24, 2007 3:09 PM Subject: Re: [TMIC] News And Results! Hi Cora, Gilly, please forward this to Cora for me...I don't have her address anymore. Thanks. Congratulations! Sounds like there is good news from your neck of the woods too. Isn't it weird the simple things that make us happy now? May I ask, because I missed something along the way,,,what did you have done and why? I mean, it sounds like you weren't self-cathing or something. I could never have gone more than three hours around the clock before I broke my legs and had this foley put in. Now they don't know if they can get me off of it. That's why I have a special interest in what you had done. I also have to do digital stimulation of my bowels to have any effect and sometimes , as you know, it is a whole lot of work and takes forever. I am super interested in what kind of stimulator you are talking about. I woke up from a nap today soaking wet with urine and it went through four pads. I have dressings on both sides of my butt for pressure sores and of course they got all wet and I had to take them off. Dave had gone to work already and I could not get my home nursing to come out and put new dressings on, so here I sit, in pain...waiting for Dave to get home. It sounds like whatever it is that you have had done is right up my alley! You hang in there lady and keep enjoying all of your newfound freedom. Maybe you'll beat your TM, a little bit at a time. Peace and Prayers, Jude AOL now offers free email to everyone. Find out more about what's free from AOL at AOL.com.
RE: [TMIC] News And Results!
Ah Hah! You know that the secret is that most of us out here can't fit into any of her stuff! :-) Cora Such great news! On your way home stop at Victoria's Secret you deserve it!! -Original Message- From: [EMAIL PROTECTED] [mailto:[EMAIL PROTECTED] Sent: Saturday, March 24, 2007 3:48 PM To: [EMAIL PROTECTED]; tmic-list@eskimo.com Subject: Re: [TMIC] News And Results! I'm having the Medtronic Interstim device implanted. There has even been a company representative involved in the procedures. It can kind of be described as a pacemaker for the bladder. Check out the Medtronic website for more information. Cora, wearing first pair of panties in 4 1/2 years. Hi Cora, That sounds great! But what is it that you have had done? I guess I missed those emails. Right now I have to straight cath to go pee. I don't have that much leakage but I am on 2 bladder meds also. Lynn, in RI where it is a beautiful spring Saturday - Original Message - From: [EMAIL PROTECTED] To: tmic-list@eskimo.com Sent: Friday, March 23, 2007 8:03 PM Subject: [TMIC] News And Results! We switched the leads from the right lead to the left lead this morning. I can scarcely believe the difference! I've only had enough leaking today to change pads ONCE! We all know that this TM/blasted syndrome-opathy affects us differently from person to person-- but differently on different sides as well. I've got a feeling they put me on the side that they thought was less likely to give results first. I admit that I'd have been severely bummed if I had good results then bad. We'll see how nights go.. I usually just put on a gob of pads and overnight diaper and try to sleep through. I kept increasing the signal, as I became used to it , on side one, up to about a 5 (halfway) Then I had some fever, dizzyness, didn't feel at all good, and pretty much got over that, then when changing to the left lead, I thought the tolerance that had built up might have some effect, but no! I started at about .5 and haven't gone above 1 today, and can still feel it. I'm pretty sure that its just about finding the setting that works; on the side that works. I did ask, and was told they would use the side that did the best. And...I've had normal bowel movements since about the 4th day. I mean, I used to have to use digital stimulation to achieve a bowel movement, and considered it to be under control, but these are without stimulation (except from the stimulator, of course)! Wow! This is what I was hoping for. They did say that us TMers have less success if our bladders retain rather than leak. If it works for me, it can work for others. Cora
RE: [TMIC]
coffee? did someone say coffee? Can't be too much coffee, can there?
And the engineer's exam is way great!
Cora
Wayne,
The swelling question is a tough one. Most of us just have to find a way
to try to keep it down to a level we can live with. Keeping your legs
elevated helps some. Watching salt intake, taking diuretics and exersize
are the most standard endeavors. One of the group members has a pretty
cool contraption that helps him hang upside down for several minutes at a
time which he says helps with his but that equipment is expensive and
takes up a lot of room. Plus, I'm not sure how healthy it would be for
you. You would need to talk with your doctor or physical therapist before
trying it. As far a a quad being about to transfer, I've known a couple
that could do it alone but not many. It depends on how much return you are
going to get. It takes a lot of strength to move dead wieght from point A
to point B. But don't give up. Keep trying. The best thing is to get in
the best shape you can be in. In the long run, as much as you can do,
keep doing it. If you don't use it, you will loose it. Every little bit
helps.
Where do you live Wayne? I don't remember reading any of your postings.
How long have you had TM?
Larry in Oklahoma where I think I've had too much coffee this
mornig!!!
Larry Throne, MSW From: Wayne Rabalais
To:
Subject: [TMIC]
Date: Wed, 21 Mar 2007 18:00:09 -0600
body {font-family:Arial,
Helvetica;font-size:10pt;color:#00;margin-top:25px;margin-left:25px;}
P.msoNormal, LI.msoNormal {font-family:Helvetica, quot;Times New
Romanquot;;font-size:10pt;margin-top:0px;margin-left:0px;color:'#cc';}
I know there was a question about swelling but I never saw an answer. Do
any of you have swelling of the feet? What has been done for you? I also
wanted to get feedback on something. I'm about to go to PT and OT. I
haven't had therapy for about 11/2 years. I hope to get some strength in
my hands and arms. What are the chances of me being able to transfer if I
am a quad?
Watch free concerts with Pink, Rod Stewart, Oasis and more. Visit MSN
Presents today.
[TMIC] RE: News and Results
Thanks, All of you for the well-wishes. This is the best I have felt since getting this disease. I would defenitely recommend a trial. And, yes, Larry, I had a UTI just before: they called me and called in a couple of antibiotics that we had to go by and pick up on the way to the airport. They also gave me a 'routine' bout of Keflex after the stage one surgery. I may have to still worry about retention: but I do have a catheter with me in case I need it. Hang in there, folks. I am your poster child for today! Cora
Re: [TMIC] News And Results!
I'm having the Medtronic Interstim device implanted. There has even been a company representative involved in the procedures. It can kind of be described as a pacemaker for the bladder. Check out the Medtronic website for more information. Cora, wearing first pair of panties in 4 1/2 years. Hi Cora, That sounds great! But what is it that you have had done? I guess I missed those emails. Right now I have to straight cath to go pee. I don't have that much leakage but I am on 2 bladder meds also. Lynn, in RI where it is a beautiful spring Saturday - Original Message - From: [EMAIL PROTECTED] To: tmic-list@eskimo.com Sent: Friday, March 23, 2007 8:03 PM Subject: [TMIC] News And Results! We switched the leads from the right lead to the left lead this morning. I can scarcely believe the difference! I've only had enough leaking today to change pads ONCE! We all know that this TM/blasted syndrome-opathy affects us differently from person to person-- but differently on different sides as well. I've got a feeling they put me on the side that they thought was less likely to give results first. I admit that I'd have been severely bummed if I had good results then bad. We'll see how nights go.. I usually just put on a gob of pads and overnight diaper and try to sleep through. I kept increasing the signal, as I became used to it , on side one, up to about a 5 (halfway) Then I had some fever, dizzyness, didn't feel at all good, and pretty much got over that, then when changing to the left lead, I thought the tolerance that had built up might have some effect, but no! I started at about .5 and haven't gone above 1 today, and can still feel it. I'm pretty sure that its just about finding the setting that works; on the side that works. I did ask, and was told they would use the side that did the best. And...I've had normal bowel movements since about the 4th day. I mean, I used to have to use digital stimulation to achieve a bowel movement, and considered it to be under control, but these are without stimulation (except from the stimulator, of course)! Wow! This is what I was hoping for. They did say that us TMers have less success if our bladders retain rather than leak. If it works for me, it can work for others. Cora
[TMIC] News And Results!
We switched the leads from the right lead to the left lead this morning. I can scarcely believe the difference! I've only had enough leaking today to change pads ONCE! We all know that this TM/blasted syndrome-opathy affects us differently from person to person-- but differently on different sides as well. I've got a feeling they put me on the side that they thought was less likely to give results first. I admit that I'd have been severely bummed if I had good results then bad. We'll see how nights go.. I usually just put on a gob of pads and overnight diaper and try to sleep through. I kept increasing the signal, as I became used to it , on side one, up to about a 5 (halfway) Then I had some fever, dizzyness, didn't feel at all good, and pretty much got over that, then when changing to the left lead, I thought the tolerance that had built up might have some effect, but no! I started at about .5 and haven't gone above 1 today, and can still feel it. I'm pretty sure that its just about finding the setting that works; on the side that works. I did ask, and was told they would use the side that did the best. And...I've had normal bowel movements since about the 4th day. I mean, I used to have to use digital stimulation to achieve a bowel movement, and considered it to be under control, but these are without stimulation (except from the stimulator, of course)! Wow! This is what I was hoping for. They did say that us TMers have less success if our bladders retain rather than leak. If it works for me, it can work for others. Cora
[TMIC] RE: News
Hey Gang, Thanks for all the well-wishes and prayers. I need 'em. One day was not good at all--I wet myself in the middle of a store on the way to the bathroom. I didn't die of embarrassment--quite! The next day was better. I have some questions to ask the Dr. today. I want to know if I'm supposed to crank this thing up till I can feel it again. Part of the problem is numbness in the area I'm supposed to feel it in: the pelvic floor. There's a tolerance factor in that where I could feel it at first, now it takes more juice. Not sure, but I think it's just where it works for me Let you all know more later. Cora, who got into Baltimore and into and out of surgery before the sleet hit.
Re: interstim therapy [TMIC]
Helga: Yes, I am going to go to Baltimore on March 16 to give it a try: I'll get back to everyone to let you know how it goes. The research suggests that most folks who have this get at least 50% improvement, and I don't know what improvement means, but I will before all is said and done. Cora Dear Cora: Did you have your appointment with the urologist at Johns Hopkins? Were you a candidate for interstim therapy? Warm regards, Helga [from the TMIC list]
RE: [Norton AntiSpam] [TMIC] FYI
Well, I think that is what I'm about to get! Less than 30 days now til I go and get it! cora HOT DAMN !! GIMME ME ONE - Original Message - From: Larry Throne To: tmic-list@eskimo.com Sent: 2/16/2007 7:53:55 PM Subject: [Norton AntiSpam] [TMIC] FYI I found this in the MSN Health fitness Web page: Health News 'Smart Bladder' Technology Could Help Paralyzed Stimulating spinal cord can restore natural urination, animal study shows -- Robert Preidt FRIDAY, Feb. 16 (HealthDay News) -- Duke University researchers say they've moved a step closer in their efforts to develop a smart bladder pacemaker that could restore bladder control in people with spinal cord injury or neurological diseases. The latest finding of the project, which started in 2004, shows that electrical stimulation of the pelvic nerve in the spinal cord can control the contraction and relaxation of muscles involved in bladder control. In tests on cats, the researchers found that high frequency electrical pulses directed at the pelvic nerve helped empty the bladder, while low frequency pulses increased bladder capacity and improved continence. This method of manipulating the nervous system is a more flexible way of controlling urinary function than direct bladder stimulation, said Warren Grill of Duke's Pratt School of Engineering. Stimulating the bladder directly can cause it only to contract, not to keep it from contracting. We stimulate the sensory inputs in the spinal cord to orchestrate either the inhibition or activation of urination, Grill said in a prepared statement. This illustrates an important principle: We can use the 'smarts' of the nervous system to orchestrate control of complex functions, he said. It may be possible to use a similar approach to stimulate spinal reflexes that control movement to help people who are paralyzed, Grill said. The research is expected to be presented Friday at the American Association for the Advancement of Science annual meeting in San Francisco. More information The U.S. National Institute of Diabetes and Digestive and Kidney Diseases explains how nerve damage/diseases affect bladder control. content by: SOURCE: Duke University, news release, Feb. 16, 2007 Play Flexicon: the crossword game that feeds your brain. PLAY now for FREE.
[TMIC] February BirthBabies
Happy Birthday ALL! (better late than never, no?) 2/2/63 Ursula 2/2 Lisa in TN 2-5 Tita in Delaware 2-6-51 Barbara Alma 2/6/53 Sue 2-7-82 Barbara in Texas 2-9-41 Frank 2/11/55 2-11-56 Deb Casey 2/15/70 Jill 02/16/38 David T. Gibson 2/16/62 Diane Aja 2-17-40 JOAN FINK 2-20 Norma 21/02/47 Phyllis Pollock 2/23 Erin 2/26 Patti - Michigan 2/27/53 Cindy Have a Wild and Crazy Day! Cora
Re: RE: [TMIC] Magic?
Whew! I thought there for a minute that phranque had gone serious on us. Cora VOO DOO, WHO? DO YOU DO VOO DOO? [Original Message] From: [EMAIL PROTECTED] [EMAIL PROTECTED] To: [EMAIL PROTECTED]; tMIC-list@eskimo.com Date: 1/23/2007 10:44:14 AM Subject: Re: RE: [TMIC] Magic? THERE ARE DOCUMENTED CASES WHERE VACCINES HAVE CAUSED TM, INCLUDING THE FLU VACCINE I believe you, But some cases of TM are from VooDoo. pH
[TMIC] Re: Flack
Hear, Hear! Do I remember getting flack from Tom way back when I started? Cora. JENNA, LIKE I SAID DO WHAT WORKS FOR YOU. I AM SORRY YOU HAVE GOTTEN FLACK BY WHAT YOU SHARED WITH US. I WANT TO KNOW ANYTHING THAT CAN HELP. PAM WHO IS INTERESTED IN EVERYONES OPINION AND WHAT HELPS THEM.
RE: [TMIC] TM Spasms
Tracey and all: The doctor at Johns Hopkins who is doing my interstim (in March--I'll be sure to tell you all about it) said that Botox injections in the bladder muscle is the next thing to try for my spastic bladder. and as for spasms in legs, I have a very good massage therapist. She does not make a euphoric, dreamy, good-feeling massage--she gets in there and kneads those muscles til it hurts, but over the past few months, I actually have had some time when the spazzing in the backs of my thighs stopped! (for some days) Of course, we're in ice right now and walking on it has got my legs tightened up again. She claims that the horseback riding helps as much or more than her massage. For me, this is working, as long as I work at it. That seems to be the key doesn't it? We all have to work hard at keeping whatever functioning we have. Cora, who cannot ride til the ice melts and the temperature gets to at least 40 degrees. My 13 year old daughter just received Botox in the outside calf muscle on her one leg. The only issue is that it relaxed the good muscles to help the others to become strong. They have now put a cast on her leg, from her knee down, to re-teach the muscle where it should be. It was too tight and they couldn't get it to relax. The chance of a sprain is very good b/c she won't have the control of her good muscles and the not so good muscles have not completely strengthened yet. If you are not able to be up and moving, this would probably be a good fix, but if you are currently up and moving about, it will relax muscles that you used to have control over, therefore, making slightly harder to get around until the other muscles are strong. I don't regret her having it at all. The prognosis is supposed to be very good. I would just make sure that you all know the risks involved before doing it. With my daughter, they actually hooked up e stem to the needle so that they could make the muscles jump and know that they were getting the botox into the correct muscle. She had approx 15 shots in an area of about 10 inches high and 4 inches wide. The froze the skin with that freezing spray before they inserted each needle and she didn't seem to mind any of it. She has approx 95% of her feeling back in her legs and couldn't really feel anything during the procedure. The only issue was that the freezing spray actually caused frostbite kind of marks on her leg. By the evening her leg was burning and kind of sore but Tylenol helped it quite a bit and she has been fine since. 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. From: Sandy Heidel [mailto:[EMAIL PROTECTED] Sent: Wednesday, January 17, 2007 10:13 AM To: [EMAIL PROTECTED]; TMIC-LIST@eskimo.com Subject: Re: [TMIC] TM Spasms Reported 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
[TMIC] January Birthdays
Hey! Let's us Januaries show all the others how to have the best birthdays ever! Happy Birthday everybody! 1- 7-77 Lauren 1/8/51 Nancy Williams 1-8-51 Sandi 1/9/60 Julienne 1/13 Debi 1-17 Jenna Stentz 1/20/56 Kay Cole 1-21 Blaine Frye 1/21 Carol Easterday 1/23/49 Patti Dotson 1-27-44 Pat S. 1-28 Holly 1-28 Sally and ME! Cora
Re: [TMIC] Where is everyone?
Easy to rememer, Frank: SAD Seasonal Affective Disorder And add my Christmas wishes to the List! I am having a wonderful time preparing for Christmas. This year is as good as last year was bad! My strength and Stamina have increased with the horseback therapy, and the trigger point massage: I don't know what I'd be like without it! Well, yeah, last year my muscles were making my toes curl down, which added to my problems) Maybe this time next year, I'll even be out of diapers! Love to allCora HO, HO, Ho... Merry Christmas to each and every one of you!!! I have been on this listserver for about 5 years. It seems that the e-mails start decreasing in early november and bottom out about at the Solstice then increase. Another effect of T.M., decreased sunlight causing depression- I can't remember the name... Another effect of T.M. Good Tidings and Blessings to All F
RE: [TMIC] Interstim therapy
Tracey: I have taken my sweet time, I guess, getting ready for this step mentally. The first year was the worst. Now I have bowel control at least 90% of the time. I have tried the medications, etc. and I just get UTIs. What kind of procedures are they doing? Exercises? Ive tried hourly trips to the bathroom, and what I get with that is no voiding until I stand up and get somewhere else, then it goes! Dr. Wright said it sounded like my bladder is just doing whatever it wants to when it wants to, regardless. I said, YEP. Of course, I am 61, had a hysterectomy and then surgical repair of cystocele, rectocele, and urethral sling. Tell me more of what they are doing with Ashlee. Cora Cora: My daughter, Ashlee, is actually in The Kennedy Krieger Institute for Spinal Cord injuries and they are going to work on how bowel and bladder and their main goal is to get her out of her pull ups as well. They are attached to Hopkins and are excellent at rehab. My daughter, who just turned 13 has been dealing with TM for almost 2 years. She has made so much progress in the last 4 days of being here, it is amazing. These people are great, if you have the opportunity to come here and let them work with you, I know that you would probably see results. They do intensive rehab not only on the body but have a specific nurse that works with the bowel and bladder patients to get them out of diapers and pullups and into normal underwear. Do you cath during the day at all? -Original Message- From: [EMAIL PROTECTED] [mailto:[EMAIL PROTECTED] Sent: Thursday, December 14, 2006 7:15 PM To: tmic-list@eskimo.com Subject: [TMIC] Interstim therapy Hey all: I am going back to Johns Hopkins again to the plumbing dept. I have had no luck at all taking medicine to get my bladder to work right again and so the docs are going to see if I am a good candidate for interstim therapy. Any of you tried it? It is rather like a pacemaker for the bladder, with a lead placed nest to the sacral nerve, and then you adjust the electric signal until it makes the bladder relax and quit spazzing,(making you void). After four years of this wearing diapers, I'd like to see if something can be done. He said 2nd choice is botox, but it has to be repeated every 7-10 months. Most radical is surgery on the bladder--reconstruction actually. I don't think I hate diapers that much. :~) Cora
[TMIC] Interstim therapy
Hey all: I am going back to Johns Hopkins again to the plumbing dept. I have had no luck at all taking medicine to get my bladder to work right again and so the docs are going to see if I am a good candidate for interstim therapy. Any of you tried it? It is rather like a pacemaker for the bladder, with a lead placed nest to the sacral nerve, and then you adjust the electric signal until it makes the bladder relax and quit spazzing,(making you void). After four years of this wearing diapers, I'd like to see if something can be done. He said 2nd choice is botox, but it has to be repeated every 7-10 months. Most radical is surgery on the bladder--reconstruction actually. I don't think I hate diapers that much. :~) Cora
[TMIC] December birthdays
Sorry to be a little late, but if late, Happy Birthday, re-cycled! I thought about just skipping it, since I'm late, but thought: that's just what most folks do to December birthday folks, and I'm not going to. You are just as entitled to celebrate as those of us who don't have a birthday that close to Christmas! Happy Birthday from Cora! 12-2-74 Meghan 12/2/93 Ashlee Black 12-3 - 53 Wim from Holland 12- 4-34 Jan Burgess 12-8-62 Lori Malloy 12-10-59 Shirley from UK 12-10-77 Lauren in MO 12-11-47 Donna Hodson 12-15-34 Alton 12-15-70 CarolAnn B.L. from South Carolina 12-16-60 Rachael 12-18-57 Rod Jenke 12/23/49 Roger Pratt and 12-25 Gilly
[TMIC] night
Yes! Through the experiences shared through this list, plus my own experimentation, I, too take my meds at night before bed. I don't take baclofen or neurontin, only zoloft and tizanidine, but taking them in the a.m. just made me drowsy, and I often had to take an hour or half-hour nap before I could do anything. Now I take them at night, and if they make me drowsy--so much the better--and no creepy-crawly leg spasms--and, I don't wake up in the morning with leg cramps! Cora Hello Jill. I take both of them at night to help me sleep. The neurontin subdues the pain and the baclofen relaxes the spasms. I used to take them both during the day but found the fatigue too overwhelming. I don't have any side effects other than the fatigue, which is a bonus at bedtime ;-)
RE: [TMIC] today's feat
Sue: that's exactly where I was affected too. L5. I tried to tell myself that it didn't come on with back pain, but then why was I twisting and trying to chang my position to something more comfortable? Yeah, there was back pain! Then burning pain in left lower leg. It went on from about 3pm to 6pm, and then sorta slacked off--I'd had a shot of Torridol and some steroids by mouth. If I had not, who knows how long it would have kept on like that? That night I found that if I didn't get up and go the the toilet--immediately, I couldn't hold it. And I couldn't walk either, so we had put me on a wheeled secretary chair so I could roll into the bathroom. By noon the next day I was numb from belly button down, and couldn't urinate at all. So I guess onset was over several hours. It took almost 3 weeks to get me walking with a walker, and 3 months to go to a quad-cane. Cora I should have also added to my previous e-mail that at onset I felt an excruciating pain in my lower back which felt like someone stabbed me with a knife. Within minutes I was paralyzed from the waist down and the excruciating pain was gone. I don't know if it had gone away..or I could no longer feel it because of the paralysis. L-5 was where my lesion was. Sue -Original Message- From: Bob and Sue Mattis [mailto:[EMAIL PROTECTED] Sent: Sunday, October 08, 2006 10:40 PM To: 'Alton Ryder'; 'TM list' Subject: RE: [TMIC] today's feat I agree Alton. My onset was within less than 10 minutes..and paralysis from the waist down . Seems more likely to be something quick like a stroke/infarction than something underlying like a virus, infection or autoimmune reaction. I was given the TM diagnosis though..and no one ever mentioned a stroke. Sue M -Original Message- From: Alton Ryder [mailto:[EMAIL PROTECTED] Sent: Saturday, October 07, 2006 8:52 PM To: TM list Subject: Re: [TMIC] today's feat My neuro thinks I had a spinal cord infarction(stroke) but all my symptoms sound similar to TM I believe that I, too, had an infarction within the spinal cord. The onset was twenty or thirty minutes, start to finish. That seems more consistent with an infarction, not an infection or an autoimmune reaction. I went from normality to paraplegic that suddenly. Alton
Re: [TMIC] Re: tmic-digest Digest V2006 #218
Harold- my 4 yr anniversary is one week from today- after rehab, etc. I, like you got back to walking with a cane, still have my bladder and bowel dysfunction, and have had quite a lot of numbness and muscle spasms in my legs. Year 3, I got worse: UTIs, and feet got sores, etc. In this last 3 months I am experiencing regaining of some sensation in my feet that I have not felt for 4 years! I attribute this to horseback riding therapy and trigger point massage therapy. Improvement after the 2 yr. anniversary is a theme we have discussed here many times. The big conclusion is that it is never too late to expect improvement! Don't stop trying different ways to manage your symptoms. Advocate for yourself, keep excellent records, and work hard to keep all your health care team up to date on you. I keep a running record of all my doctors, addresses, phones, last appt., next scheduled appt, from my primary care physician right down to my pharmacist and massage therapist, another sheet has my medications, dosages, and prescribing physician, along with a statement of the benefits or side effects I experience from the medication, when first prescribed, last prescription refill date, down to the vitamins and over the counter stuff I take, including the cranberry juice taken daily. These I keep on my computer, update them regularly and take a new copy to each appointment. I think that this helps each physician know clearly what I am doing and how and why. I try to be an open book. Cora in OK I have a simple Question. Has anyone showed any improvement after the 2 year's of Transverse Myelitis? I sure would like to know. I have got back to walking with a cane, but still have my Bladder and Bowel dysfunction. thanks Harold - Original Message - From: [EMAIL PROTECTED] To: [EMAIL PROTECTED] Sent: Monday, October 02, 2006 2:56 PM Subject: tmic-digest Digest V2006 #218
[TMIC] Happy, Happy Birthday
HAVE A WONDERFUL OCTOBER AND A FANTASTIC BIRTHDAY, ALL: Lauren Graham,Neil McNeil, Jackie, Rudy Aceves, Lori B., Kate, and Kim, Diana Gray, Miranda, Lanora, Sandy Parker, Linda Cherpeski, Renee A., Cody Kidwell, (inhale deeply) Matthew, Keith, Debby Jones, Jim Lubin (yea!) Anne Shreve,Bernie Pelow, Robin , Krissy , Netta Ganor ,Joellen Finkelstein, Jennifer Spence, and... Donna ! From Cora
Re: [TMIC] TM and recurrence
Janet: In this forum, we are glad you ask; you cannot ask a stupid question because there are none--if you need to know, it's important. No matter how many times something comes up, there's always a new or different way to look at it or deal with it. And if the answers that are posted don't quite get it for you, keep asking until you get something you understand. That's what is so very special about this group. We never take it for granted that any part of living with TM is a known quantity. When you realize how wonderful and complicated the spinal cord is--it is no wonder that we all experience individual clusters of symptoms and residuals. A warm welcome to you, and to any lurkers out there who are too shy to ask a question. TM is a continuing journey, to which we all can attest. I am still learning what works for me. Cora in OK, with the most recent developments being: using multiple Depends Boosts pads for night time, so I don't have to wake up and go to the potty. Also, horseback riding for strength and exercise. I swear I can walk better after riding. And a new massage therapist that's working the knots (trigger points) out of my muscles of my legs, and we are making headway! It's not as enjoyable a massage as my old therapist, but we're getting better results. And last but not least, changing my medication schedule to where I take the Tizanidine at bedtime, so that the drowsiness it tends to cause helps my legs relax and quit twitchin'! Hello I am just wondering if anyone has had another episode of TM after the original one? Mine has remained relatively stable for a year now, and I am just wondering if this will be the way it is now, or if it can flare up and be debilitating again. Being fairly new to the list, I am not sure if this has been covered before, my apologies if it has. Thanks Janet
Re: [TMIC] HMO's
Jude: What a Bummer! That is what anger is for! when you have been messed over and it energizes you to do something about it. I am wishing I was closer so I could help you advocate for yourself! Perhaps Adult Protective Services could be called---I'm not sure what all they could do, but maybe they would have an in with some of the systems in your state. One thing we learned at the Symposium was that HMO s and PPO's sometimes will assign a Case manager if you ask: I think that's the route I would take ASAP. Also, don't just take one route. You can drop action from other sources if you get results from any of the others. Cora Hi All and Frank, As usual, I need some advice and help. I am so darn mad I almost cannot stand it! (actually, can't STAND it, at all) LOL I think that most of you know I have been waiting and waiting to go to the seating clinic so that I can get my tilting/reclining wheelchair so that I can get out of this danged bed I have been in since December. Well, the telephone woke me up early this morning with the good news from my doc's office that all of this time the clinic they were sending me to is out of my HMO's territory!!! I hate ineptness so much... (anger) What have I done lately to hurt anybody? (feeling sorry for myself) I have been in this da bed (that I am so thankful to have) since the first of December with two broken legs, after being Paralyzed with complete TM for 4 years (for those of you who do not know this), and I want to get up and in my chair so badly I almost can't stand it! I can't sit in the chair for more than 1/2 hour because my legs swell inside the casts so badly and become so painful that I can't take it and have to go to bed in order to raise them. Besides that, I have a pressure sore inside the anal cavity (caused by the ischema (sp) bone) that bleeds profusely when I perform my normal bowel program. I was so looking forward to the new (my old one was stolen) seat for the new wheelchair... (feeling even more sorry for myself) I just don't know what to do any more. I need help with some ideas and answers. I don't know how to fight city hall any longer and am almost out of the strength needed to do it. It's all INSURANCE COMPANY and HMO'S, not to mention the SOCIAL SECURITY COMMISSION who have all of the power...They are in charge and what I/we say is of little or no consequence. I am getting so pissed!!! (anger) Why is it always one step forward and three steps back? Dr. Frank, I added your name to this email because you know what I need to say and who I mostly need to say it to in order to get something moving in the proper manner, by doing whatever it is in the proper order, addressing the right people! And, I want ACTION, now! What do I do, how do I do it, and who do I address my actions to? Help me, please! Some of you have already been helping from behind the List. Sally, the Nutritionist wrote a lovely letter addressing how the use of a new wheelchair that raises up above my cooktop so that I could take charge of making our meals using healthier foods (Dave does his best, but cooking is not his strong suit...), so that it would help by enhanced healing of pressure sores and stomach ulcers, my weight loss, and all over general health. People have been sending me loving support through the grapevine and I appreciate it all so very, very much. And I appreciate all that Dave does. He takes care of me all by himself...no one comes in to help and we can't afford to pay any type of service. He takes care of the animals, the house, the five acres, the laundry, all of my needs (staying up half the night last night because I had such deathly diarrhea I was in tears), and he works six/ten to twelve hour nights a week, at 54 years old. I don't mean ever to sound like I don't appreciate him. Anyway, I'm sorry for getting out of control with this. And for being so needy. But I am at my wits end and need whatever kind of help any of you can give. Peace and Prayers, Jude
Re: [TMIC] BOWELS
That makes two of us: The way it is working, I consider my bowels to be under control: daily bowel movements. It's been two years now and it does take some time for the bowel to be stimulated by hand, and to respond by opening. And you're rightIt never fails. Cora well, I just use the good ole stimulation method and use my finger...never seems to fail me and I've been doing it since I got out of the hosp a year now...I have just come to terms with the fact that this is the way it is for now... bobby jim hijar [EMAIL PROTECTED] wrote: Have you tried squatting... Of course, you'll hafta deposit your stuff on a shallow pan or newspapers. In the very old dayze, women used to give birth by squatting... there must've been a good reason why they did it that way. Bobberino From:ROBERTCOOKTo: TMIC-LIST@eskimo.com Sent: Thursday, August 10, 2006 11:43 AM Subject: Re: [TMIC] BOWELS I PREFER THE OIL BASED, IT ALSO LUBRICATES BETTER THAN WATER. I NEED ALL THE HELP I CAN GET ON THAT PART, SINCE I CANNOT EXCERPT PRESSURE,EXCEPT BY BENDING AND TWISTING MY TORSO WITH MY ARM PUSHING AGAINST THE WALLOR SOMETHING LIKE A HAND RAIL BOB FROM SPRING, TEX. From: Stacy HarimTo: [EMAIL PROTECTED];TMIC-LIST@eskimo.com Sent: 8/10/2006 11:24:09 AM Subject: Re: [TMIC] BOWELS I use magic bullets. The only place that they can be bought is online. They are water based instead of oil like the Bisacodyl or Ducolax suppositories. They work faster and most of the people I know with paralysis use them. They were also recommended by my rehab doctor. Oh and they are cheaper. You can get a box of a 100 for 45 bucks here http://www.allegromedical.com/browse/ProductDetail.do?pid=190938utm_source=MSNutm_medium=ppcutm_term=magic%20bullet%20suppositories. Stacy Krissy Zodda Tri State Support Group Leader (603)589-1894 http://www.geocities.com/tmladyk/home.html ~I'm In pretty Good Shape For the Shape I am in~ - Talk is cheap. Use Yahoo! Messenger to make PC-to-Phone calls. Great rates starting at 1¢/min.
Re: [TMIC] Crazy Question
Marie: Doctors have their opinions--and you have yours. I just got back from my (local) neurologist, and she still says my diagnosis is Transverse Myelitis. Dr. Kerr is sure it was caused by the B-12 deficiency. Whatever--the results are the same. I'm not taking anything for my burning, tingling feelings either: the side effects of the medications I have taken were worse than the pain. But really: if the heat is bothering you: and we know it does; you may not be able to perspire below the affected area--your neuro surely would realize that it would be dangerous for you especially in this heat if your body could not cool itself! Be sure to write your symptoms down and give your doc a copy every time you go in. Make sure he can explain your condition to you in plain language that you can understand. If you don't advocate for yourself--you will not get the care that you need. My husband just came in from a supervision session with some colleagues at the VA hospital, laughing because they told him someone got a wallet-biopsy I know the feeling. Cora Good morning Jill, I'm not taking anything at this time for the burning, tingling feelings. I tried Lyrica and Cymbalta and both gave severe diarrhea (uncontrollable). Both caused weight gain and I certainly don't need that. My neuro doesn't seen to think my TM is anything to worry about. He sees I am able to walk so he just says see me in 6 months and that's it. When I try to explain my new aches and pains and other symptoms he says get better control of your diabetes and you will do fine. Sometimes I think what's the use of even going to the Dr. My lesion is at the C 2-3 level. I can't take the heat since TM came along. I walk unassisted but have trouble with balance. I stumble and stagger. Hope today is a better day. Marie in sunny Fl - Original Message - From: Trudy To: [EMAIL PROTECTED] ; [EMAIL PROTECTED] ; tmic-list@eskimo.com Sent: Wednesday, August 09, 2006 9:22 AM Subject: RE: [TMIC] Crazy Question Jill I have had TM for four years and Barbara describes it exactly as I have experienced it. And Tegretol amost did me in. My neuro was on vacation and when she got back I was in a very, very bad way! My liver started shutting down. Baclofen did nothing for me. I am now on Lyrica the latest drug of choice very similar to Neurontin. I too have that worry of TM turning into MS at any time. I have experienced flare ups at times also. Trudy -- From: [EMAIL PROTECTED] [mailto:[EMAIL PROTECTED] Sent: Tuesday, August 08, 2006 8:55 AM To: [EMAIL PROTECTED]; tmic-list@eskimo.com Subject: Re: [TMIC] Crazy Question Yes, it's very normal to have little flare-ups. I would often fear another attack was coming on during the first year or two, but in my case, it never got quite to the extent the first attack reached. I was seeing my neuro often the first several months and he would assure me that it was just a flare-up. He said that the TM affects the nervous system in such a way that it's like it is oversensitive to stimuli, so even things like not getting enough sleep or having a cold or having stress (even good stress, like getting ready for company to come) could make symptoms flare up a bit. But some times there was no reason that I knew of -- things would just get worse for a while. Even now, almost 11 years later, though I've kind of reached a plateau, there will be some days when I'll wonder what in the world is going on with me. I kind of think of it as riding the waves (though I'm not surfer and can't even swim :-) ) -- but I try to tell myself, This is just a flare-up -- just ride it out for a while and things will be normal again. Of course, after TM hits, normal is different from what it was before anyway. :-) That said, though, don't hesitate to call your dr. if things are flaring up to the point where it is scaring you. And ask about different medications -- Kathryn mentioned Baclofen. That didn't do much for me, but it helps a lot of people. I was on Tegretol for a while -- my neuro said it was used for epilepsy patients but had a quieting effect on the nervous system in general, so was sometimes used for TM patients. It really did help, but they have to check your liver functions often when you're on it. I decided to get off of it because I was afraid of long-tern liver damage (though that may be unfounded, I don't know). But I wouldn't hesitate to try it again if I felt I needed it. We all have different body chemistries and different things, or different combinations of things, will be helpful to different people. Barbara H. http://barbarah.wordpress.com/ In a message dated 8/7/2006 11:16:36 PM Eastern Standard Time, [EMAIL PROTECTED] writes: Although I feel I'm VERY fortunate to be able to walk unassisted, I feel like I
Re: [TMIC] unsubscribe
Folks out there wanting to subscribe, or unsubscribe must make that request to [EMAIL PROTECTED] with the subject either subscribe or unsubscribe
Re: [TMIC] Getting Your Vitamin B12 + The Symposium
Alan, and all: Well, I am now rested up from the trip to Baltimore, and it was more than FABULOUS--it was STUPENDOUS! For those of you who don't know, there are two tracks: a scientific track for the doctors and scientists, and a clinical track for the rest of us--simultaneously going on. Chitra Krishnan organized the symposium--and what a job she did! She is Dr. Kerr's Research Assistant. The subject matter was organized from the simple to the complex: Anatomy and neural function--normal function, then presentation of the various cousin diseases/syndromes; their symptoms and how they are diagnosed; how they are similar and different; presentations on various symptoms/residuals, like bowel and bladder, gait and pain; then treatment elements, including physical therapy, drug therapy, devices which improve functioning, and culminating in the climax piece: Dr. Kerr and his stem cell research! It will all be available on CD. We even got to see Jim Lubin on a web-cam type of connection, in real time! So glad to see you, Jim. The last event was a question-and-answer session with Dr. Kerr, Dr. Greenburg, Dr. Kaplin, and some others. And Nancy Davis was there--she was diagnosed with MS some time ago, and has written a book Lean on Me, which she generously provided everyone a complimentary copy of! It is about how to organize and manage your own health care, especially if you have a life threatening, life changing diagnosis. For those of you who think you can't afford this trip, I hope you realize that they provided continental breakfast, buffet lunches and snacks daily, plus one evening banquet, and two wine and cheese evening events, so suppers were the only meal you needed to buy on a couple of the evenings. And they kept us busy 9am to 7pm or later most days! It was really hard to miss some of the sessions to go get a little rest! The symposium cost is very reasonable for patients and caregivers, and the hotel had a conference rate that made it affordable. The doctors were great at intermingling and answering questions, including Dr. Kerr, and his staff. I am on the internet researching how B-12 deficiency usually presents, if it does so in predictable ways, and exactly how and what the damage is in this Classic Case that I have. Dr. Kaplin and Dr. Kerr pretty much said that my demyelinating injury due to B-12 deficiency was not an inflammatory one. One thing I learned was that B-12 deficiency can take months, even years to develop symptoms, and that usually, cognition, depression, fatigue, and other like brain functions are affected first. It makes me look back to the year or so before I came down with the sudden physical symptoms and try to remember: I do know There was fatigue, and I was burning out some. Probably it was the early symptoms. I also found out that bleeding gums can be caused by B-12 deficiency. Sorry to be so windy: I'll have more to say, I'm sure. Cora
Re: [TMIC] Baltimore Symposium
Debbie: I will be there! Bringing my husband this time, instead of my son. Hubby has retired and can travel with me. Cora How many people will I be having the privilege of meeting or seeing again during the TM symposium in Baltimore? I am really looking forward to it! Debbie [EMAIL PROTECTED]
Re: [TMIC] July Birthdays
Happy Birthday All you July Babies: Sumer Smile! Vicki Dance! Julie Laugh! Sandi S.Eat Cake! JohnHave lots of Ice cream! Jenna Be with Friends! Michelle Have Fun! LindaBe Happy! Hildred Love! Dex Celebrate! And, everyone have the best Birthday Ever! Cora.
Re: [TMIC] June birthdays
Happy Birthday to Tobe, Irene, Marabeth, Sharon , Sheila, Cheryl, Tom, Debbie, Ann, Errol , Dennis, Pauline, Bobby Jim, and Crystal! Celebrate Big Time! Cora
Re: [TMIC] fatigue
I sure don't know--but I am going to the Symposium---I'll try to find out--You going? Cora in OKla. I noticed that this summer at the 2nd International Rare Neuroimmunolic Symposium there is going to be a session on Fatigue in TM and similar disorders. In the meantime I just wondered if someone can explain it or has any information on it. I take many vitamins and supplements, and they may be helping, but still battle fatigue daily. Thanks, Gary in Michigan
Re: [TMIC] OK, another *graphic * question
Yeah, I see what you mean--I was repeating what someone on the list told me a year or so ago, and was speaking of the sphincters, Of course there are other muscles that push in the case of bladder and bowel. And of course, my own damage is at the sacral level, so I am a mess, and am still trying to understand it all. Thanks for the help and for the websites! Anything you may have to say in further clarification of the anatomy and function would be welcome. Cora same muscles control both Mnnn. No, not really. Control for each comes from the brain and the sacral spinal cord. The muscles are quite separate. Even f the bladder, for example, the detrusor muscles [the push the urine out muscles] are separate from the bladder sphincter muscles that won't let it out. My personal problem is that both sets of muscles spastically contract at the same time - the bladder tries to empty so badly it hurts while the sphincter blocks all but a teaspoon [detrusor-sphincter dyssynergia]. Because of this I wear a Foley. A Google search for neurogenic bladder yields http://www.emedicine.com/MED/topic3176.htm read it. A Google search for nerves autonomic bowel incontinence yields http://www.emedicine.com/pmr/topic230.htm read it. Alton, who has little trouble with his tail
Re: [TMIC] Hello from Oklahoma
It is definitely your business, as a part of my support group! Yes, I saw a podiatrist today, got put on antibiotics, --again, and feel pretty good about the decision to go to someone who could help with the feet. He picked up on the extent of the problems, and the causes, quicker than any doc I have seen up to now (except Dr. Kerr, of course), and he also said classic case when I ran down the exact extent of my symptoms. He will put me in diabetic shoes, after the infection is cleared up and he has shaped up my feet. Thanks, Jude for your concern and for your prayers! We're all in this together. Cora. Hi Cora, Maybe it's none of my business, but I am writing concerning the problems you are having with your mostly numb feet. As you know, I have been dealing with broken leg bones for almost 5 months, and have recently been having numb feelings accompanied by pins and needles like they are falling asleep. I am wondering if you have seen a doctor yet and if so, what did he/she have to say about it? Could it be related to deadened nerves caused by not moving enough, kind of like one would get from a pressure sore? I'm so sorry to hear about the challenges you and your husband have gone through as of late. You are in my Prayers and if there is ever any way I can help, please let me know. Peace, Jude
Re: [TMIC] OK, another *graphic * question
Linda: And I am 61. And when I was a newby on this list, I asked about what muscles controlled peeing, pooping, etc. and was told that the same muscles control both! That's why we toot while we pee, and if one comes, the other might also: particularly if you have nerve damage, etc. This stuff is of such interest--it is how we deal with everyday things. It is called functioning. I just find it easier to know why! Thanks for the questions/comments: everyone's say helps someone else who is afraid to ask. Cora Oh my..I have been dealing with this issue for some time. I can't figure out what the problem is, age, TM, or both? I remember, when I was young, walking with older people, and they would toot as they walked along..I couldn't understand why they didn't at least try to control that!!! Now, I find myself in the same situation, and I can noit control it! I was in this duscussion at work the other day, talking to younger ones, telling them I can't figure this out, and for then to just wait!!! And of course, after sitting for a while, I get up and away I went, toot, toot, tootfor once, my face did not turn red! I decided it is just laughter from my back side.by the way I am 59 Linda Garrett in Ohio - New Yahoo! Messenger with Voice. Call regular phones from your PC and save big.
Re: [TMIC] More questions
Hello Nima: I am on Tizanidine and Lyrica. Both seem to work ok. Remember, I am not a doctor, so cannot give medical advice. I see several factors at work here: All medicines have side effects. One of Tizanidine's is drowsiness. So is Lyrica. I take naps after medication time so I can function. As we deal with our cluster of symptoms, we have to compensate for our deficiencies by overworking other parts, thus causing more problems. I see others on the list who regularly see a physiatrist to evaluate their functioning and suggest exercises and ways to strengthen and improve physical functioning. Be sure to let the doctor know about these problems! Be an advocate for him! Don't take no for an answer. And with everything else that is going on--is he being treated for depression? TM has the highest coincidence of depression of any disease, including MS. Hooray for you looking for answers! Hi Everybody A lot has been said about Lyrica and before that about Baclofen. I would like to clarify these points. a.. Those who are taking Lyrica are you on any other medication like Baclofen or Tizanidine or Zanaflex? b.. My husband Dev was put on Baclofen and Tizanidine. He started getting very tired. His left leg is very weak he cannot use it. He does regular physiotherapy but now he feels his right leg is getting weak. Is it fatigue? c.. He is using a walker at the moment and all the weight is borne by his arms so his arms get tired and at times he gets blisters on his palms. Will it be harmful or dangerous to his upper body if this goes on? d.. His back jams up at night. He is feeling a lot of pain lately. So he was put on Lyrica. Is this usual with TM? These symptoms are coming now. Initially there was no pain (only burning), no spasms, his legs were almost ok and his balance had come back 70% but now after 1 1/2 year it is getting worse. Yet all the tests, MRI and scans prove there is no further demyelination of the nerves and his VEP and BERM (sight and hearing evoked potential tests) are normal so MS is ruled out. I was under the impression that TM is one time attatck it doesn't get worse, there is only residual effect of TM. So is his condition getting worse because of TM getting worse or due to taking Baclofen or overstraining of muscles or what??? Hope someone has some answers for me Dev's love of life Nima from Kenyan coast
Re: [TMIC] Hello from Oklahoma
Hello, Larry! I, too, had taken a sabbatical, so to speak: including a house fire; rebuilding, and my husband had a car wreck, broken wrist, surgery, etc. Now the infrastructure is fixed and my feet are giving out. I guess the next step (no pun intended) is to go to a podiatrist. After nearly 4 years, I am getting hammer toes, terrible corns, callouses, blisters, and can't wear my shoes or I get the above, plus infections. In feet that are mostly numb, this can't be good! Cora, also in OK, and yes it is cool and rainy! Just wanted to say hello and let everyone know I am still doing okay. Deborah Nord Capen contacted me noticing I have been missing in action. I also just located the new archived emails, so I can try to stay up with everyone again. Hope all is well. Talk to you soon. Larry Throne where it is cool and rainy in Oklahoma
Re: [TMIC] OK, another *graphic * question
Krissy: get set for mortification! If death came by emarrassment from farting in public, we'd ALL be DEAD. I, too, have the same problem: and if people are polite, they won't mention it. Or...you could explain, quickly, as if it weren't important-which it isn't--that sometimes that happens, and you can no longer control that. Do it with a smile! Cora OK, maybe not so graphic and I am sure will make ya giggle or smile BUT I have this issue. I know we all have poop and pee issues and I have learned to deal with them. But I am also farting alot! I bend over, I fart. I lean , I fart. It's not the gassy smelly ones, but just noise, but it still can be loud sometimes and its damn embarrassing! So my question is, is there anything I can do? I am going away in June with friends and would rather not be farting around them...I'd be mortified! Krissy Zodda Tri State Support Group Leader http://www.geocities.com/tmladyk/home.html ~I'm In pretty Good Shape For the Shape I am in~ - Get amazing travel prices for air and hotel in one click on Yahoo! FareChase
Re: [TMIC] Mr. Graves info?
Rosalie: The neurologist gave me a tm diagnosis, but also noted that I had a B-12 deficiency. When I went to the 2004 Symposium, Dr Kerr noted that a differential diagnosis (some other ailment that might look like tm that might be present, and if found to be true, would supercede the tm diagnosis) is B-12 deficiency. When I heard that, I asked him specifically about it--subsequently became his patient, went to him, and he confirmed that B-12 deficiency caused my spinal cord demyelination, at L5/S1. A classic case, he said. Doesn't change the fact that the damage I have causes the exact same symptoms, so I live with it like the rest of you- and I hang around this bunch because you all are the best thing since sliced bread! I love you all! Cora Of course so far I have no diagnosis. First thought it was Guilliane-Barre Syndrome, then TM, but my neurologist says it was a spinal cord stroke and is quite sure about it. In any case I have most of the symptons that most of you have but fortunately not alot of pain. Some nerve pain that is like sciatic pain but only in the evening. Also, the more I lie around the worse I feel. If I spend more time walking (with a walker of course and using mostly hands) then I dont get as stiff and ill feeling. I cant stand on my own yet but am working on it and thats because the muscles in my butt and my hamstrings are not working, Thanks, Rosalie
[TMIC] May Birthday Greetings
Happy, Happy Birthday, May babies! Have an extra piece of cake!
Re: [TMIC] Why Depression with TM?
Those things certainly are factors, but research done by Dr.s Kerr and Kaplin show that a substance called IL-6, I think, is present in the body/spinal fluid: and this substance is highly correlated with depression. So, there seems to be a physiological cause as well. Cora My question is this---why does cord insult itslf cause depression regardless of degree of disability? Don't you think that the root of the depression comes from the basic loss of our selves as we used to describe our existence and place in our world? Everything changes. We are no longer the vital human beings, contributing in all ways to society, and it it loss piled upon loss, upon loss that causes the depression. In my humble opinion, Jude
Re: [TMIC] Doing the Right Thing
Actually, One of the studies was informational only, and I had to fill out several questionnaires. The other was with Dr. Kaplin, the psychiatrist that works with Dr. Kerr. He and Dr. Kerr were doing a study on the extreme prevalence of Major Depression on victims of MS, TM, and other spinal cord injuries. They included clinical interviews/diagnosis, and some standardized testing for mental functioning, a spinal tap, and then a follow-up six months later, with repeats of all, plus an overnight stay in the hospital with a test on the effects of a chemical over time, via blood draws. It was awesome. They are having another symposium this summer, I am advised. I will definitely go. Cora Hi Cora, Kudos to you for following through and actually doing something physical to advance the science of stem cell research. What kinds of studies will you be involved in? How exciting for you to be on the cutting edge of technology and for you to know the right people, in the right place, at the right time. I hope you will keep us all informed of the goings on during the clinical testing. I had been selected to be in a study of pain relief at Brigham and Young College at Harvard Medical School, but it required constant travel back and forth and started by removing all of us from the pain medication we are each presently taking. They were going to pay almost $2000.00 to each applicant selected, but I had to turn them down when I broke both legs. I received another letter just last week, so if anyone (women only) is interested, let me know and I will send the information. If anyone out there can advise me of a way to help our cause from my hospital bed, using my computer, please let me know. If writing to people or companies, I might need some help in formulating letters etc. Thank you again Cora, and best of everything to you. Peace, Jude
Re: [TMIC] April Birthdays
Happy Birthday: Ken Kris Dianna Todd Shelia and anyone else lurking out there with an April Birthday! Cora
Re: [TMIC] weather and TM
Sure sounds familiar. And these hot flashes can't all be about the change of life! Cora in OK A lot of times, even just watching TV on the couch, I'll take a throw blanket to cover my arms, which are cold, but have to leave it off my feet, which get too hot. Unless its' really, really cold, I start off at bed at night with just a sheet over me and my lower legs sticking out, then some time during the night pull the bedspread on and bring my feet in. My thermostat is all messed up! Both the heat and the cold affect me -- the cold makes my muscles stiffen up, and heat just drains energy from me. Barbara H.
Re: [TMIC] hello again
Thanks for the warm welcome: I did get some surgery:and no, it did not fix things so I don't have to wear diapers! I guess I'm stuck with this for now. Hope all is well with you. Cora Welcome home Cora! Glad you are back and I hope you never get your diapers in a wad! :) O...that would be doggone uncomfortable. You have been rather busy of late and I am sorry for your problems but sure am glad you found time to return to the fold and help us out again. Blessings, Mary Eden
