[TMIC] Hi all
Hi all, I haven't been online due to the severe spasms I've been in bed. If I don't overdue than they seem to be some better. I get sick of bed tho. Anyways, I was wondering if any of you have a urostomy put in? I have but as soon as I put it in my pants, it leaks all over. It is so frustrating. My husband put one in last night and it's fine if I'm lying on my bed not moving but if I get up like just now, bam it leaks down my leg and all. Help??? Thanks and hope all is going good for all. Natalie M. __ Do You Yahoo!? Tired of spam? Yahoo! Mail has the best spam protection around http://mail.yahoo.com
[TMIC] return Transverse Myellitis
All This is Natalies' husband writing for her. She is currently in the hospital with severe pain in her right leg. She has been on I.V. pain killer since Wednesday morning and it has not broken yet. The question she wants me to ask is if anybody has heard of return of Transverse Myellits. She is concerned about becoming worse off than she already is. - Take the Internet to Go: Yahoo!Go puts the Internet in your pocket: mail, news, photos more.
Re: [TMIC] Pain
Trudy, I was sent by my dr. to a neurologist, he was thinking he might have different meds. for me. The dr. was nice but stated there to nothing else I can do for you that your dr. is not doing. I thought why did I come here for? wasted dr. trip againif I could count them in my life it would be a high total. Don't mean to be negative, but it's been like that in my life. Natalie M. Trudy OGILVIE [EMAIL PROTECTED] wrote: Kevin, So sorry your having meds problems! I think this will always be a huge problem for us. I switched from Neurontin (5 years) to Lyrica and also Cymbalta. So now I am on 2 75mg. of Lyrica twice a day. I also take 60mg. of Cymbalta. I also have percocet or Vicodin for when the pain gets severe. I only take it when I really need it. Maybe once or twice a week. I take 1 1/2 tablets. Depends on how severe the pain is as to whether I take percocet or Vicodin. I also take 1/2 tablet of Xanax when I cannot get to sleep. I'm sure we all know the dangers of getting addicted. It is my primary care physician that has helped me out, my neuro really didn't care how much pain I was in... he just wouldn't or couldn't understand my pain... Interesting side note: The Cymbalta supresses the high I would get with the percocet. Thankfully tho it does supress the pain!!! I wish you luck...Let us know how it goes! Trudy Worrying does not empty tomorrow of its troubles; It empties today of its strengths. - From: Kevin Wolfthal [EMAIL PROTECTED] To: Tmic-list@eskimo.com Subject: Re: [TMIC] Pain Date: Wed, 26 Sep 2007 22:56:54 -0400 I tried Cymbalta and didn't tolerate it, same with Lyrica unfortunately. Xanax keeps my heart rate normal and never made me sick. I take the smallest possible dose and quantity per day usually one or two, though I am allowed more. All medications are potentially dangerous, even baby aspirin can make you bleed internally. I am very careful about how I take drugs so I don't misuse them. Kevin Larry Throne wrote: And most likely if you get the pain to a tolerable level you won't need the anxiety medication. That's some pretty dangerous stuff. Ask your doctor to put you on cymbalta. It's the best thing I've found besides neurontin. Larry in Oklahoma who's been down that road Larry Throne, MSW From: /Regina Rummel [EMAIL PROTECTED]/ To: /tmic-list@eskimo.com/ Subject: /[TMIC] Pain/ Date: /Wed, 26 Sep 2007 12:03:12 -0700 (PDT)/ Best idea is seeing a new neurologist. Zanax (for anxiety and nervousness) and 81mg aspirin? That's it! I'm no doctor, but sounds like you're not taking anything for pain. Good luck and let us know what the new neuro. has to say. R Its the Windows Live Hotmail® you love on your phone! http://g.msn.com/8HMBENUS/2752??PS=47575 - Don't let your dream ride pass you by.Make it a reality with Yahoo! Autos.
[TMIC] Cymbalta
Kevin, I couldn't take Cymbalta either due to headaches. I got a severe headach that lasted for 3 days honestly. Drs. since have wanted to give it another try but I say no thanks. I do hope this new neurologist helps you. Some are so narrow minded. We finally got a new one here in our city. I still get my meds., even my patches from him. Can't find a decent pain dr. and after 15 yrs. or more of having one I'm not for sure I find one. My lst one was the pain ever - his wife wanted to live in Florida. So he up and moved there. Nat M. - Building a website is a piece of cake. Yahoo! Small Business gives you all the tools to get online.
Re: [TMIC] Itching
Carol, I think I might be allergic to the Duragesic patches (fentayl) I wear. The patch area makes me itch unbelieveably and I itch all around it. I hate to have to go off them, but I can't stand this 24 hr. itching. Thanks, Natalie M. Carol [EMAIL PROTECTED] wrote: I have been fighting one red, kind of scaly spot right between my forehead and hair line. I've had it biopsied and came back as an infection (I think). This spot appeared before I came down with TM, perhaps 5 years prior. Carol from Culver, IN - Original Message - From: natalie mizenko To: Transverse Myellitis Sent: Saturday, September 22, 2007 2:41 PM Subject: [TMIC] Itching To everyone: While I was in the hospital I got this terrible red rash it is still going on. I have an appt. w/ my dermatologist the first week of Oct. I itch all the time everywhere and when I scatch whelps like come up. Also, even my watch touching me, if it hits the bed too hard or something, it causes a red spot. I washed my face this morning and my husband said you have a red face with whelps on it. StrangeI don't know what is going on. I am in misery itching...Any similar stories??? Natalie M. - Be a better Globetrotter. Get better travel answers from someone who knows. Yahoo! Answers - Check it out. - Catch up on fall's hot new shows on Yahoo! TV. Watch previews, get listings, and more!
Re: [TMIC] re: TM Oprah
Kevin, I agree so much w/ you on friends who disappear from you when you get sick, even my familly members did me back in the late 80's. Drs. had problems diagnosing my condition back then, so my family (alot of them) treated me like it was all in my head. I have a brother who works 1 mile from me and has for 10 years and has never come over during lunch to say Hi or check on me. And I have a sister who is so caught up in chruch work and her own family only that she won't even visit me at the hospital. I finally wrote her off...I figure I don't need the extra stress. It's easier not to be upset all the time for hurt feelings than to be upset all the time. I had a sister that died 5 years ago and she said the same thing. Take care. Natalie M. Kevin Wolfthal [EMAIL PROTECTED] wrote: Gary, I agree strongly with all 3 points. In particular, a lack of sensitivity in many of those who are healthy. As we know, all health is temporary except for a rare few perhaps. Unfortunately, those who aren't sensitive to those of us with health problems, probably won't change their attitudes no matter what. I have found this out the hard way as former friends disappeared when I got sick. Kevin [EMAIL PROTECTED] wrote: I wrote to Oprah about Cody Unser being on her show. I guess the benefit of exposing people to TM is 1) perhaps it would result in more funding being made available for research 2) more doctors will be familiar with TM and recognize symptoms more quickly and 3) others might be aware not to take for granted their health and be more understanding of those with disorders. One example of this 3rd point is when I came back to work after being off with my initial TM experience. I found out that a co-worker, a big Indy 500 fan, knew about Cody Unser and thus was a little aware of TM when others at work had not a clue. So, it is nice when others are introduced to TM, not to give sympathy but to better understand that we may not always be able to be at our best but rather are just trying to make it through the day. Gary in Michigan - Shape Yahoo! in your own image. Join our Network Research Panel today!
Re: [TMIC] one of our felloe TM'ers
To all: I had Botox injections for my neck back in the late 80's - it was experimental then. I had it done once and it did not work for my neck. Every body is different tho. Natalie M. [EMAIL PROTECTED] wrote: Bernie The first thing I thought of when I read your post was my neuro asking me if I wanted to try botox injections. Have you looked into this to reduce the spasms? Patti - Michigan Bernard Pelow wrote: = *This is scary for me. For the last few months my right leg has been contracting to where I can hardly get the knee past 90 degrees anymore, no matter how much I massage and stretch my leg. And when I have spasms now, the leg tries to straighten out, and it causes a lot more pain than usual. Is this a normal procedure for someone in this condition? I really do NOT want another surgery, especially to lose my leg. Peace, Bernie in Texas* Hi Ella, Just wanted to let you know that Red is having his left leg amputated tomorrow, September 20th, around 2:00 in the afternoon. The doctors think it best to go above the knee since his leg is contracted. - Check out the hottest 2008 models today at Yahoo! Autos.
[TMIC] Itching
To everyone: While I was in the hospital I got this terrible red rash it is still going on. I have an appt. w/ my dermatologist the first week of Oct. I itch all the time everywhere and when I scatch whelps like come up. Also, even my watch touching me, if it hits the bed too hard or something, it causes a red spot. I washed my face this morning and my husband said you have a red face with whelps on it. StrangeI don't know what is going on. I am in misery itching...Any similar stories??? Natalie M. - Be a better Globetrotter. Get better travel answers from someone who knows. Yahoo! Answers - Check it out.
Re: [TMIC] I'm back home
Gunny, I have told him IF he were in this position, I would not be cursing while taking care of him. It's little things tho that he cusses about. Like when my foot falls off my shower chair he'll say GD and things like that. I tell him You are saying that to me. He disagreeshe says he is saying it for purely what just happened and no one should have to go thru what I do. He just won't accept it and move on. I don't know if he ever will. He still holds grudges from when he was a child. He is wonderful at all household duties - I couldn't ask for a more supportive partner in that way. He comes home at lunch and fixes me a sandwich or whatever and usually he has already been here to let home health in (for my wound vac) urostomy. He helps them do all that and really doesn't mind at all. Seems to find it a challenge. I am worried about him tho - I know he is depressed and he has admitted to it, but will not do anything about it - EVER. He holds too much in. He doesn't even watch TV anymore. The only thing he does at night is crossword puzzles from the papers. I'm worried about him. I told him to get a check up w/ the heart dr. and he will not. His stress must be sky high. He says the more you push me the lease I'm likely to do it. So it is hard to be silent. Oh well, sorry for the novel. Thanks for caring, Natalie M. [EMAIL PROTECTED] wrote: Nat: Try to make your husband understand that it's not your fault you have accidents. It's the TM that does it. Also remind him of his wedding vows. You might suggest that if the shoe were on the other foot, you'd do whatever is necessary to get the job done. Sometimes you can't sugar coat things, you have to take the bull by the horns and kick back. Use discretion. Gunny - See what's new at AOL.com and Make AOL Your Homepage. - Be a better Heartthrob. Get better relationship answers from someone who knows. Yahoo! Answers - Check it out.
Re: Fwd: Re: [TMIC] I'm back home
Rick, Thanks for the nice email. You read it like I see it too. I try so hard not to say anything to me when he is in fury over something. It usually doesn't last long at all. It is short lived. He is a perfectionist and that is part of it. I recall when I was and how little things bothered me, but w/ my life changes, I can't be a perfectionist I feel anymore. His name is Michael. We've been married 30 years. I better go. Thanks for the prayers, Natalie M. [EMAIL PROTECTED] wrote: Hey Natalie, He's a good man and it probably just breaks his heart to think back to the way things were before TM. My wife gets so frustrated with me so I know exactly how you feel. Doll, you can't help yourself but you can try and do more for yourself, if your able. But always know your limitations and If you need help you have to call on him. I have seen people sit around and whine and depend on everyones help. I have found in my 10 years the less you ask for help the more you get. You know how much he loves you and that will never change, he's probably just tired and this hurts him to see you, his little bride in this shape. I will always pray a special prayer that he shows you the respect and admiration that you deserve. Your a great woman. I can tell. God be with you. By the way whats your husbands name and tell him for me thanks for taking such good care of you. Rick -- GOD BLESS US ALL -- Original message -- From: natalie mizenko Rick, Thanks for the get well wishes. Sometimes it is difficult like when my husband says all these foul words while I'm transferring to my shower chair or I've had an accident in my pants. He gets ugly then and makes me feel so bad. Oh well. He is so good in other ways. Natalie M. Note: forwarded message attached. - Moody friends. Drama queens. Your life? Nope! - their life, your story. Play Sims Stories at Yahoo! Games. - Moody friends. Drama queens. Your life? Nope! - their life, your story. Play Sims Stories at Yahoo! Games.
Re: [TMIC] I'm back home
Pam, Thanks for your nice email. I'm sorry for the embarrassment you had to go thru on the handicap restroom. I get mad at that to see a healty looking 20 something getting into the car, time and time again, in the handicap parking zone.I try to tell myself I don't know her; there might be problems, but it is difficult. Natalie M. [EMAIL PROTECTED] wrote: NATALIE I CAN ONLY IMAGINE HOW YOU FEEL. WHEN I WAS N THE HOSPITAL THE LAST 2 WEEKS I FELT THE SAME WAY. THEY WOULD NOT LET ME DO ANYTHING WITHOUT 2 NURSES, IT DROVE ME CRAZY. I CAN WALK AGAIN WITH A WALKER AND I HAVE TO GET A BRACE THAT GOES UP TO MY KNEE. THEY SAID I HAD TO WEAR IT MOST OF THE TIME HOW LONG I DO NOT KNOW. IT WAS MY B/D AND I HAD ALOT OF FRIENDS THERE AND MY ONLY FAMILY SINCE KATRINA IS MY HUSBAND DAN. I HAD TO GO ON THE BED PAN I WAS SO UPSET WITH ALL MY GUESTS THERE AND ALL MY FRIENDS I KNOW COMING IN AND OUT SINCE I WORKED THERE .EVERYONE WENT OUTSIDE MY ROOM ,IT TOOK FOR EVER BEFORE SOMEONE WOULD COME THEY WHERE VERY BUSY. I COULD NOT HOLD IT MUCH LONGER. DAN PUT ME ON THE BED PAN SOMETHING HE NEVER HAD TO DO. HE SAID THANK GOD THIS IS JUST TILL YOU GO HOME. I KIND OF KNOW HOW YOU FEEL BUT I CONSIDER MYSELF FORTUNATE I CAN GET AROUND. I JUST EXCEPTED THE FACT THAT WHEN I GO OUT I BRING EXTRA CLOTHES AND SHOES. I ALWAYS HAVE WHAT I CALL MY HYGEINE BAG WITH ME. I ONLY HAD ONE ACCIDENT I WAS WAITING TO GO INTO THE HANDICAP ROOM BUT THEY HAD 3 GIRLS USING IT WHO WHERE NOT HANDICAPPED AT ALL AND I WET MY PANTS. I WAS FURIOUS, I GAVE THOSE GIRLS A BAD TIME. I THEN HAD SOMEONE CALL SECURITY. I WAS SO EMBARRASED BUT MY ANGER MADE ME STRONGER.THAT PARTICULAR STORE HAS RULES AND REGULATIONS. IF YOU ARE NOT HANDICAPPED YOU CANNOT USE THOSE ROOMS. THEY NOW HAVE PEOPLE WHO C HECK THE BATHROOMS OFTEN. I WAS ALSO TOLD IF I NEEDED TO GO TO THE LADIES ROOM JUST TELL ANYONE AND THEY WILL MAKE SURE NO ONE BUT PEOPLE WHO ARE HANDICAPPED ARE IN THERE. DAN TOLD ME HE WAS SO UPSET WITH OUR GUESTS AND THAT WAS THE FIRST TIME HE EVER HAD TO PUT ME ON A BED PAN. LIKE YOU SAID THEY ARE SO GOOD IN SO MANY OTHER WAYS.YOUR NOT ALONE . I KNOW LOTS OF PEOPLE ON THE LIST LIKE YOU SOME LIKE ME. ITS OUR LIFE NOW WHY I DO NOT KNOW BUT WE JUST DEAL WITH IT THE BEST WAY WE CAN. I AM GLAD YOUR HOME. SORRY ABOUT THE STAFF INFECTION. I HOPE YOU FEEL BETTER EVERYDAY . GOD BLESS TIAD PAM PS I NEVER EVER SAID THIS BEFORE TO THE LIST JUST IN PRIVATE E-MAILS. I NOW HAVE NO PROBLEM WITH THIS. I WANT TO THANK EVERYONE FOR THE WARM WISHES AND MY B/D E-MAILS. - See what's new at AOL.com and Make AOL Your Homepage. - Building a website is a piece of cake. Yahoo! Small Business gives you all the tools to get online.
Re: [TMIC] I'm back home
Regina, Thanks for all the well wishes. My daughter son-in-law are back in Missouri now. Natalie M. Regina Rummel [EMAIL PROTECTED] wrote: Natalie, So glad you're home with your daughter and son in law to look after you. I hope this surgery will help diminish that awful pain you complained about earlier. Take care. R natalie mizenko [EMAIL PROTECTED] wrote: Hello to everyone...I've missed you all. My urostomy surgery was much more than I had planned on it being. I also got a stah infection (my first ever) very soon afterwards and he had to open up my womb. A womb vac (which is used alot anymore) was connected to the tubing, etc. and other medical stuff. They say the vacs cut your healing time in half. My womb now is like 1/2 inch deep, so he might just stitch me up next week and no more wound vac. This is my lst day out of bed. My daughter and son-in-law are here. So, thought while they are showering I'd drop you all a line. Hope folks are doing ok. later - Natalie M. - Moody friends. Drama queens. Your life? Nope! - their life, your story. Play Sims Stories at Yahoo! Games. - Fussy? Opinionated? Impossible to please? Perfect. Join Yahoo!'s user panel and lay it on us.
Fwd: Re: [TMIC] I'm back home
Grace, Thanks for the well wishes. They are much appreciated. Natalie M. Note: forwarded message attached. - Building a website is a piece of cake. Yahoo! Small Business gives you all the tools to get online.---BeginMessage--- Hi Natalie, I'm so glad that you are on the mend. Be sure to take care of yourself and don't try to overdo. Hugs, Grace srote: s -- Moody friends. Drama queens. Your life? Nope! - their life, your story. Play Sims Stories at Yahoo! Games. http://us.rd.yahoo.com/evt=48224/*http://sims.yahoo.com/ ---End Message---
Re: [TMIC] I'm back home
Pam, You take care too. Sorry you were in the hospital too. I hate them so much. Natalie M. [EMAIL PROTECTED] wrote: GLAD YOUR HOME. SORRY ABOUT THE STAFF I HAD IT ITS NO FUN. I JUST GOT OUT THE HOSPITAL MYSELF I WAS THERE FOR LABOR DAY MY B/D. I SURVIVED AND AM DOING GREAT. YOU TAKE CARE OF YOURSELF. GOD BLESS TIAD PAM - See what's new at AOL.com and Make AOL Your Homepage. - Luggage? GPS? Comic books? Check out fitting gifts for grads at Yahoo! Search.
Fwd: Re: [TMIC] NATALIE!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!
Linda, Thanks so much. I've been in bed alot. Natalie M. Note: forwarded message attached. - Luggage? GPS? Comic books? Check out fitting gifts for grads at Yahoo! Search.---BeginMessage--- Hi Natalie, I'm so glad the surgery is done and you're home. Please just rest, and rest some more. Sounds like you've got some great help. Hugs Linda - Original Message - From: natalie mizenkomailto:[EMAIL PROTECTED] To: L T CHERPESKImailto:[EMAIL PROTECTED] Sent: Saturday, September 15, 2007 9:37 AM Subject: Re: [TMIC] NATALIE!! Linda C, Thanks for the great concern. I'm ok - just limited for time in w/c now til I get better. Natalie M. L T CHERPESKI [EMAIL PROTECTED]mailto:[EMAIL PROTECTED] wrote: Hi Barbara, Has anyone heard yet how Natalie is doing?? Hope to hear something soon as she is really on my mind. Hugs - Linda C - Original Message - From: [EMAIL PROTECTED]mailto:[EMAIL PROTECTED] To: [EMAIL PROTECTED]mailto:[EMAIL PROTECTED] ; tmic-list@eskimo.commailto:tmic-list@eskimo.com Sent: Tuesday, August 21, 2007 12:19 PM Subject: Re: [TMIC] NATALIE!! I asked Natalie to please talk to her husband about sending a message to the list, but don't know what the outcome will be. Hugs, Barbara A Get a sneak peek of the all-new AOL.comhttp://discover.aol.com/memed/aolcom30tour/?ncid=AOLAOF0002000982. -- Catch up on fall's hot new showshttp://us.rd.yahoo.com/tv/mail/tagline/falltv/evt=47093/*http://tv.yahoo.com/collections/3658 on Yahoo! TV. Watch previews, get listings, and more! ---End Message---
Fwd: Re: [TMIC] I'm back home
Rick, Thanks for the get well wishes. Sometimes it is difficult like when my husband says all these foul words while I'm transferring to my shower chair or I've had an accident in my pants. He gets ugly then and makes me feel so bad. Oh well. He is so good in other ways. Natalie M. Note: forwarded message attached. - Moody friends. Drama queens. Your life? Nope! - their life, your story. Play Sims Stories at Yahoo! Games. ---BeginMessage--- Well you have a pity party all you want ,they don't know what we are feeling. My wife feels great all the time, Never gets a cold, diarea, diaper rash, etc. Sometimes I got to get away from my wife. She gets negative I think it's because nobody ever had to do anything to help me, nowHUH! You keep being a sweetheart. R -- GOD BLESS US ALL -- Original message -- From: natalie mizenko [EMAIL PROTECTED] Rick, Thanks for all the well wishes. It is so thoughtful of you. My family is downshairs (down one complete step) but I can't get down there. My son-in-law lives in that room when he is here and usually my husband follows suit, then my daughter. It's just not the same being at the top of the other room looking down, so I said I'm going to get on my computer. It seems the more I am paralyzed I've let more things bother me able my disability. I know I should not, but it does. And my husband will NEVER watch tv w/ me in our bedroom, which is a nice flat screen tv. He says he's never interested in tv, but when they come he is glued to it down there. Just having a little pity on myself which I should not I know. Thanks anyway again, Nat M. [EMAIL PROTECTED] wrote: Hi Natalie, so glad things went well for you. As a group we all pray for your continued healing. Stafh is no joke and hopefully you'll never see its ugly head again. Just glad your back and better. Just luv ya. Rick -- GOD BLESS US ALL -- Original message -- From: natalie mizenko Hello to everyone...I've missed you all. My urostomy surgery was much more than I had planned on it being. I also got a stah infection (my first ever) very soon afterwards and he had to open up my womb. A womb vac (which is used alot anymore) was connected to the tubing, etc. and other medical stuff. They say the vacs cut your healing time in half. My womb now is like 1/2 inch deep, so he might just stitch me up next week and no more wound vac. This is my lst day out of bed. My daughter and son-in-law are here. So, thought while they are showering I'd drop you all a line. Hope folks are doing ok. later - Natalie M. - Moody friends. Drama queens. Your life? Nope! - their life, your story. Play Sims Stories at Yahoo! Games. - Yahoo! oneSearch: Finally, mobile search that gives answers, not web links. ---End Message---
[TMIC] I'm back home
Hello to everyone...I've missed you all. My urostomy surgery was much more than I had planned on it being. I also got a stah infection (my first ever) very soon afterwards and he had to open up my womb. A womb vac (which is used alot anymore) was connected to the tubing, etc. and other medical stuff. They say the vacs cut your healing time in half. My womb now is like 1/2 inch deep, so he might just stitch me up next week and no more wound vac. This is my lst day out of bed. My daughter and son-in-law are here. So, thought while they are showering I'd drop you all a line. Hope folks are doing ok. later - Natalie M. - Moody friends. Drama queens. Your life? Nope! - their life, your story. Play Sims Stories at Yahoo! Games.
[TMIC] Surgery on Monday
Hello to all: I went yesterday to the hospital to get a picc line put in me again as I have no veins left in my arms and hands at all. I wish they would use my legs, but they seem to not want to. A trained nurse who resently started last week doing these, took her over an hour to get it threaded thru. My arm was exhausted from hanging over the gurny (sp?). Next time, I will not allow a nurse to do it. Drs. are much faster and easier on the body. I will undergo a major surgery on Monday to solve my severe incontinence. My urologist will take part of my bowel and move it over and attached my urethers in this pocket he has created and I will cath from the hole; when not cathing will seal a bandaid over it. It is not the easier surgery where you wear a bag - an ostomy I think it's called is the easier one. I don't look forward to like my 10th surgery or more for one reason or another, but a much better life for me should be in the future after a 4 to 6 month recovery. So, I will miss you all say a prayer for me that all will go smoothly. If anyone else has had this done, please email and let me know if it's ok? Take care to all, Natalie M. - Take the Internet to Go: Yahoo!Go puts the Internet in your pocket: mail, news, photos more.
Re: [TMIC] Surgery on Monday
Thanks Grace, I appreciate it. Natalie M. Grace M. [EMAIL PROTECTED] wrote: Hi Natalie, I'm so sorry to hear that it involves another surgery, but am convinced that it will indeed improve your life. I've heard some very positive things about this procedure. Try not to worry, and come back to us as soon as you can. Love and prayers for you. always. Grace - Take the Internet to Go: Yahoo!Go puts the Internet in your pocket: mail, news, photos more. - Moody friends. Drama queens. Your life? Nope! - their life, your story. Play Sims Stories at Yahoo! Games.
Re: [TMIC] Surgery on Monday
Thanks Barbara for the well wishes and I will need your prayers. I'm some concerned if I have pain that is unusal happening further out into recovery, due to my paralysis I will not feel it and it worries me some. Also, I'm well, well, noted for blood clots. I had to stop my Coumadin 7 days ago; I do have a vena cava filter which is to stop all but 3% of blood clots from going to the heart. My daughter, who is well-educated has called home twice and my husband has answered the phone, they are driving in soon tonite. She is telling him all kinds of woes about the surgery if she hits me w/ it; I will turn my wheelchair around and close my bedroom door and lock it or it will be a barroom braul (sp?) otherwise. She is so hardheaded. I wish she would have stayed in Missouri if she is causing this at this point. Thanks again, Natalie M. [EMAIL PROTECTED] wrote: Hello Natalie, You will be in my thoughts and prayers. Please let us know when you can about your condition. Or, you can have your husband send us an email, if it wouldn't be too much trouble. Keep your thoughts positive. And, I'm hoping for a better quality of life for you. Big Hugs, Barbara - Get a sneak peek of the all-new AOL.com. - Choose the right car based on your needs. Check out Yahoo! Autos new Car Finder tool.
RE: [TMIC] Anyone else?
Candy, Yours sound like people I have spoken w/ at Baylor that were in a car wreck and they had rigid spasms. I was on Baclofen for a long time even before TM hit when I went to this dr. in Little Rock, AR, who is over the Spinal Cord at a huge med center here, he took me off it, cause I don't have spasms like that. You might want to try Baclofen. I think it is for that type of spasm. I wish you well, Natalie M. cakalley [EMAIL PROTECTED] wrote: Natalie, Sorry to take so long in answering. I'm having my place remodeled - wood laminate floors instead of carpet; kitchen redone to make it easier to get around to do things, the laundry was outside and now making room inside so that I don't have to go up/down 3 steps. Answer to your question - I'm not sure if I experience the same thing. My right leg spasms the most especially first thing in the morning or if I've been in one position too long. My right leg will draw up and only the toes will be on the floor, as if I was a ballerina, and it takes several minutes for me to work out the kink meanwhile the darn leg wants to dance around if that makes any sense. As far as deep in my leg - yes at times the right calf feels and looks like one gigantic charlie horse - the muscle is really tight - and it hurts like H _ _ L! Thank GOD it only last at most a minute but it seems like hours while it is happening. I have also experienced the charlie horse feeling in my hands especially when I'm tired and I try to cut something when I'm cooking or eating OR when I crochet or knit. Nothing seems to help but to just try to relax by doing deep breathing and clearing my mind. The TENS unit has reduced the spasms and the terrible lower back pain but the spasms and pain still occur. I even sleep with my TENS unit running. The morning is still the worse. I guess TM still has to remind me daily. The knife feeling is more in my lower back - especially with any movement, barametric changes, or the cold weather. Once again, the TENS unit has helped but I find that I keep increasing the strength as the day wears on. I may start out with a 11 or 12 but by the end of the day I usually have it sit on 19 or 20. On the pain level that the Dr., nurse, or PT always ask about is maintained at about a 5 to 7. Without the TENS, the pain level would be a 5 upon waking but esculate to a 9 or 10 with movement, barametric changes, or the cold weather. Then I would take all kinds of pain meds and sleep most of the time. I hope that I have answered your questions. Prayer and thoughts for you and yours, Candy K. -Original Message- From: natalie mizenko Sent: Aug 11, 2007 6:24 PM To: Transverse Myellitis Subject: RE: [TMIC] Anyone else? Candy, Do you have muscle spams deep in your legs and at times it will go on get stronger and stronger. You can't see the skin jerking, but it is like it is then it stays there and it is like a knife in your leg then. Is yours like that? Thanks, Natalie M. cakalley wrote: Natalie, Generic name is tizanidine. Zanaflex is suppose to help with the muscle spasms. However, my TENS unit has done much better in reducing the muscle spasms plus relieving the lower back pain. I hardley take any pain meds now - only on the VERY BAD days usually the day after I've done too much the previous day or its going to rain - waiting to see about the cold weather! Hope info helps. Prays and thoughts for each and everyone, Candy K. -Original Message- From: natalie mizenko Sent: Aug 11, 2007 10:55 AM To: cakalley Subject: RE: [TMIC] Anyone else? Candy, What is Zanaflex? I've never heard of it. Is it like Zanax? Natalie M. cakalley wrote: I take zanaflex and experience the dry mouth. It seems worse in the morning, sometimes even waking me up. However, I have experienced very dry mouth feelings during the day especially if I had been doing something labor intense or after walking distances. Candy K. -Original Message- From: marieke dufresne Sent: Aug 9, 2007 7:55 PM To: [EMAIL PROTECTED], tmic-list@eskimo.com Subject: RE: [TMIC] Anyone else? Hi Natalie, About the dry mouth, what meds are you on? Many of them have this as a side effect, especially Ditropan (for the bladder). Marieke From: natalie mizenko To: Transverse Myellitis Subject: [TMIC] Anyone else? Date: Thu, 9 Aug 2007 16:53:19 -0700 (PDT) To the group: Has anyone ever experienced a very dry mouth, especially through the night and in the morning. Also, last night my arms were hurting me so badly, and I have not been anywhere but hom. Especially from my elbow to my wrist. I have a knot under the skin on both arms in that area. They were worse last night this morn. but today they were some better, after all I ended up taking a pain pill. This has never occurred so badly. I've been noticing the mouth, but not the arms, til last night. Natalie M. - Fussy? Opinionated
RE: [TMIC] Anyone else?
Candy, Do you have muscle spams deep in your legs and at times it will go on get stronger and stronger. You can't see the skin jerking, but it is like it is then it stays there and it is like a knife in your leg then. Is yours like that? Thanks, Natalie M. cakalley [EMAIL PROTECTED] wrote: Natalie, Generic name is tizanidine. Zanaflex is suppose to help with the muscle spasms. However, my TENS unit has done much better in reducing the muscle spasms plus relieving the lower back pain. I hardley take any pain meds now - only on the VERY BAD days usually the day after I've done too much the previous day or its going to rain - waiting to see about the cold weather! Hope info helps. Prays and thoughts for each and everyone, Candy K. -Original Message- From: natalie mizenko Sent: Aug 11, 2007 10:55 AM To: cakalley Subject: RE: [TMIC] Anyone else? Candy, What is Zanaflex? I've never heard of it. Is it like Zanax? Natalie M. cakalley wrote: I take zanaflex and experience the dry mouth. It seems worse in the morning, sometimes even waking me up. However, I have experienced very dry mouth feelings during the day especially if I had been doing something labor intense or after walking distances. Candy K. -Original Message- From: marieke dufresne Sent: Aug 9, 2007 7:55 PM To: [EMAIL PROTECTED], tmic-list@eskimo.com Subject: RE: [TMIC] Anyone else? Hi Natalie, About the dry mouth, what meds are you on? Many of them have this as a side effect, especially Ditropan (for the bladder). Marieke From: natalie mizenko To: Transverse Myellitis Subject: [TMIC] Anyone else? Date: Thu, 9 Aug 2007 16:53:19 -0700 (PDT) To the group: Has anyone ever experienced a very dry mouth, especially through the night and in the morning. Also, last night my arms were hurting me so badly, and I have not been anywhere but hom. Especially from my elbow to my wrist. I have a knot under the skin on both arms in that area. They were worse last night this morn. but today they were some better, after all I ended up taking a pain pill. This has never occurred so badly. I've been noticing the mouth, but not the arms, til last night. Natalie M. - Fussy? Opinionated? Impossible to please? Perfect. Join Yahoo!'s user panel and lay it on us. _ Windows Live Hotmail is the next generation of MSN Hotmail. Its fast, simple, and safer than ever and best of all its still free. Try it today! www.newhotmail.ca?icid=WLHMENCA146 Candy K. - Shape Yahoo! in your own image. Join our Network Research Panel today! Candy K. - Moody friends. Drama queens. Your life? Nope! - their life, your story. Play Sims Stories at Yahoo! Games.
[TMIC] Anyone else?
To the group: Has anyone ever experienced a very dry mouth, especially through the night and in the morning. Also, last night my arms were hurting me so badly, and I have not been anywhere but hom. Especially from my elbow to my wrist. I have a knot under the skin on both arms in that area. They were worse last night this morn. but today they were some better, after all I ended up taking a pain pill. This has never occurred so badly. I've been noticing the mouth, but not the arms, til last night. Natalie M. - Fussy? Opinionated? Impossible to please? Perfect. Join Yahoo!'s user panel and lay it on us.
Re: [TMIC] Neurologist, Rheumatologists
Grace, I know. That's why it is so strange within a few months another person in my internist office got it. I couldn't hardly believe it. I was truly suprized. Natalie M. Grace M. [EMAIL PROTECTED] wrote: Immediately following my NMO diagnosis, my PCP totally educated herself re: the disease. She explained to me that during her neurology rotation, they only took a cursory look at it---the professor told them that they would never see a case in their practice. She's been great. Grace - Be a better Globetrotter. Get better travel answers from someone who knows. Yahoo! Answers - Check it out. - Moody friends. Drama queens. Your life? Nope! - their life, your story. Play Sims Stories at Yahoo! Games.
Re: [TMIC] Wheelchairs
Well, the first time it went great w/ the other chair, but I told him next time we will go backwards. That way I don't think I will tip out. My pedals won't hit the floor and bang knock me out. Natalie M. Heather Pieter [EMAIL PROTECTED] wrote: I'm no longer in a wheelchair but do remember that was the way my husband was taught to do it with me in the chair. Go backwards down a stair. Heather in Calgary - Original Message - From: Larry Throne To: [EMAIL PROTECTED] ; tmic-list@eskimo.com Sent: Saturday, August 04, 2007 8:00 AM Subject: Re: [TMIC] Wheelchairs If I am having someone help me down a ramp, I prefer them to tip me backwards and wheel me down only on my back wheels. It that is not possible I go backwards with help. Unless I know this is an ADA ramp then I can do it my self. Larry in Oklahoma - From: natalie mizenko [EMAIL PROTECTED] To: Transverse Myellitis tmic-list@eskimo.com Subject: Re: [TMIC] Wheelchairs Date: Fri, 3 Aug 2007 16:43:52 -0700 (PDT) Pam, When u get paralyzed, how do you get back to walking?? I cud not walk at all if I tried. I am totally paralyzed from T12 down. Last weekend it was sorta funny in a way. I had been feeling better, had a break in my hard pain the day before. On Sat. nite my husband said Let's watch a movie downstairs? Well, it is only a full step and downstairs is carpeted. It is like a sunroom in a way but we always have used it like a den. It does have some wall between the windows. Anyway, he uses these 2 ramp things that he use to drive the automatic mower upon to work on it and get into the storage bldg. Anyways, we've done it before w/ my loner w/c, but not w/ this new one. He was taking me down very slowly and when we got to the bottom I flipped out and landed face down. But one leg had come in the front and one in the back. So, my head actually hit my leg mostly. Anyways, my husband picked me up (200 lbs. or a little, little less I am) and put me in the recliner. We still don't know what happened. I think my foot pedals are very low on this one so they don't wack the walls and they hit fast and out I went. It is funny to think about it now. I was a little shaken up at the time. Sorry for the novel, Natalie M. [EMAIL PROTECTED] wrote: MY HUSBAND IS ANGRY AND BITTER ALSO AT TIMES. WE WHERE 18 WHEN WE GOT MARRIED, HIGH SCHOOL SWEETHEARTS. I WAS THE ONE WHO ALWAYS GOT CALLED BY EVERYONE WHEN SOMEONE WAS ILL I STILL AM. WE WILL BE MARRIED 38 YEARS JAN.31 ST. I AM BETTER OFF THAN YOU AND HE DOES NOT UNDERSTAND WHY ME. WHAT UPSETS ME AS I AM SURE WE NEED THEM MORE FOR THINGS WE CAN NO LONGER DO. HE IS BETTER ABOUT IT NOW BUT HE DOES HAVE HIS MOMENTS. I AM LIKE YOU I DO THINGS AND THINK POSITIVE. I KNOW I CAN DO SO MUCH MORE THAN YOU AND I ADMIRE YOUR COURAGE AND STRENGTH .I FEEL THERE IS A REASON FOR EVERYTHING. I AM GOING TO BE 56 NEXT MONTH. I HAVE HAD MANY EPISODES OF TM THRU THE LAST 15 YEARS. I GET PARALYZED AT ANYTIME. BUT I ALSO HAD MANY MANY GREAT YEARS. I PRAY AND HOPE YOU NEVER HAVE ANOTHER EPISODE. OUR HUSBANDS ALSO HAVE TO VENT. I KNOW THEY DO A SURGERY SIMILAR BUT ON YOUR COLON A COLONOSCOPY. HER WHOLE IS TINY AND SHE JUST WEARS A BIGGER BANDAID ON IT. SHE TRAINED HER BODY TO DO THAT. I ALSO KNOW A GIRL WHO HAS NO BLADDER. SHE URINATES WHEN SNE HAS A BOWEL MOVEMENT. THERE IS SO MUCH TECHNOLOGY NOW I THINK WE WILL BE OK. KEEP UP THAT GREAT ATTITUDE, I KNOW YOU WILL DO FINE WITH YOUR SURGERY. GOD BLESS YOU TIAD PAM - Get a sneak peek of the all-new AOL.com. - Boardwalk for $500? In 2007? Ha! Play Monopoly Here and Now (it's updated for today's economy) at Yahoo! Games. - Tease your brain--play Clink! Win cool prizes! - No virus found in this incoming message. Checked by AVG Free Edition. Version: 7.5.476 / Virus Database: 269.11.4/936 - Release Date: 8/4/2007 2:42 PM - Take the Internet to Go: Yahoo!Go puts the Internet in your pocket: mail, news, photos more.
Re: [TMIC] Wheelchairs
When I go outside it is a permanent ramp of course he had built for me. He wud have done it himself, but he had just had rotator cuff surgery. I have like a platform to come out on and then turn the chair down the ramp. He usually puts his hand on the back of the chair if I need help to slow it down at the end and turn it away from his truck. His truck is usually parked pretty close to the ramp. Like 1 1/2 to 2 ft. from it. And outside for some reason he has to pop a wheely (sp?) to get me onto the ramp. He put a little piece of wood to smooth it up going onto the ramp. If he tries or I do w/o doing that, it wants to knock me forward. Does anyone know of a solid piece of a temporary ramp, instead of 2 pieces to use?? The room could not handle a long ramp at all. Natalie M. Kevin Wolfthal [EMAIL PROTECTED] wrote: There is a long ramp going out of an emergency exit in my building. It is the only wheelchair access to the building. The ramp goes to the sidewalk. If using a power wheelchair down the ramp, will it tend to speed up like a non-power wheelchair? Or can you control the speed of ascent? I wouldn't want to shoot out to the street, it's US-1, otherwise known as the Boston Post Road, a major and very busy street. Kevin Heather Pieter wrote: I'm no longer in a wheelchair but do remember that was the way my husband was taught to do it with me in the chair. Go backwards down a stair. Heather in Calgary - Original Message - *From:* Larry Throne *To:* [EMAIL PROTECTED] ; tmic-list@eskimo.com *Sent:* Saturday, August 04, 2007 8:00 AM *Subject:* Re: [TMIC] Wheelchairs If I am having someone help me down a ramp, I prefer them to tip me backwards and wheel me down only on my back wheels. It that is not possible I go backwards with help. Unless I know this is an ADA ramp then I can do it my self. Larry in Oklahoma From: /natalie mizenko / To: /Transverse Myellitis / Subject: /Re: [TMIC] Wheelchairs/ Date: /Fri, 3 Aug 2007 16:43:52 -0700 (PDT)/ Pam, When u get paralyzed, how do you get back to walking?? I cud not walk at all if I tried. I am totally paralyzed from T12 down. Last weekend it was sorta funny in a way. I had been feeling better, had a break in my hard pain the day before. On Sat. nite my husband said Let's watch a movie downstairs? Well, it is only a full step and downstairs is carpeted. It is like a sunroom in a way but we always have used it like a den. It does have some wall between the windows. Anyway, he uses these 2 ramp things that he use to drive the automatic mower upon to work on it and get into the storage bldg. Anyways, we've done it before w/ my loner w/c, but not w/ this new one. He was taking me down very slowly and when we got to the bottom I flipped out and landed face down. But one leg had come in the front and one in the back. So, my head actually hit my leg mostly. Anyways, my husband picked me up (200 lbs. or a little, little less I am) and put me in the recliner. We still don't know what happened. I think my foot pedals are very low on this one so they don't wack the walls and they hit fast and out I went. It is funny to think about it now. I was a little shaken up at the time. Sorry for the novel, Natalie M. */[EMAIL PROTECTED]/* wrote: MY HUSBAND IS ANGRY AND BITTER ALSO AT TIMES. WE WHERE 18 WHEN WE GOT MARRIED, HIGH SCHOOL SWEETHEARTS. I WAS THE ONE WHO ALWAYS GOT CALLED BY EVERYONE WHEN SOMEONE WAS ILL I STILL AM. WE WILL BE MARRIED 38 YEARS JAN.31 ST. I AM BETTER OFF THAN YOU AND HE DOES NOT UNDERSTAND WHY ME. WHAT UPSETS ME AS I AM SURE WE NEED THEM MORE FOR THINGS WE CAN NO LONGER DO. HE IS BETTER ABOUT IT NOW BUT HE DOES HAVE HIS MOMENTS. I AM LIKE YOU I DO THINGS AND THINK POSITIVE. I KNOW I CAN DO SO MUCH MORE THAN YOU AND I ADMIRE YOUR COURAGE AND STRENGTH .I FEEL THERE IS A REASON FOR EVERYTHING. I AM GOING TO BE 56 NEXT MONTH. I HAVE HAD MANY EPISODES OF TM THRU THE LAST 15 YEARS. I GET PARALYZED AT ANYTIME. BUT I ALSO HAD MANY MANY GREAT YEARS. I PRAY AND HOPE YOU NEVER HAVE ANOTHER EPISODE. OUR HUSBANDS ALSO HAVE TO VENT. I KNOW THEY DO A SURGERY SIMILAR BUT ON YOUR COLON A COLONOSCOPY. HER WHOLE IS TINY AND SHE JUST WEARS A BIGGER BANDAID ON IT. SHE TRAINED HER BODY TO DO THAT. I ALSO KNOW A GIRL WHO HAS NO BLADDER. SHE URINATES WHEN SNE HAS A BOWEL MOVEMENT. THERE IS SO MUCH TECHNOLOGY NOW I THINK WE WILL BE OK. KEEP UP THAT GREAT ATTITUDE, I KNOW YOU WILL DO FINE WITH YOUR SURGERY. GOD BLESS YOU TIAD PAM Get a sneak peek of the all-new AOL.com . Boardwalk for $500? In 2007? Ha! Play Monopoly Here and Now (it's updated for today's economy) at Yahoo! Games
Re: [TMIC] Wheelchairs
Gunny,
How do you get in and out of it? Do they have a hydralic lift w/ a chair
attached you transfer to? I use to do low impact w/ the Senior Citizens,
before I became one when my back was so bad before my surgeries. I never lost
weight tho doing that. I planned that it wud, but it didn't. Oh well, life
goes on...Natalie M.
Gunny [EMAIL PROTECTED] wrote: body{font-family:
Geneva,Arial,Helvetica,sans-serif;font-size:9pt;background-color:
#ff;color: black;} Natalie:
Find yourself a heated pool somewhere. Easter Seals, the Y, somewhere.
Your 90% weightless in a pool, and you'll be able to move freely. That's how I
did it.
Gunny
-Original Message-
From: natalie mizenko
Sent: Aug 3, 2007 7:43 PM
To: Transverse Myellitis
Subject: Re: [TMIC] Wheelchairs
Pam,
When u get paralyzed, how do you get back to walking?? I cud not walk at all
if I tried. I am totally paralyzed from T12 down. Last weekend it was sorta
funny in a way. I had been feeling better, had a break in my hard pain the day
before. On Sat. nite my husband said Let's watch a movie downstairs? Well,
it is only a full step and downstairs is carpeted. It is like a sunroom in a
way but we always have used it like a den. It does have some wall between the
windows. Anyway, he uses these 2 ramp things that he use to drive the
automatic mower upon to work on it and get into the storage bldg. Anyways,
we've done it before w/ my loner w/c, but not w/ this new one. He was taking
me down very slowly and when we got to the bottom I flipped out and landed face
down. But one leg had come in the front and one in the back. So, my head
actually hit my leg mostly. Anyways, my husband picked me up (200 lbs. or a
little, little less I am) and put me in the recliner. We
still don't know what happened. I think my foot pedals are very low on this
one so they don't wack the walls and they hit fast and out I went. It is funny
to think about it now. I was a little shaken up at the time. Sorry for the
novel, Natalie M.
[EMAIL PROTECTED] wrote: MY HUSBAND IS ANGRY AND BITTER ALSO AT TIMES. WE
WHERE 18 WHEN WE GOT MARRIED, HIGH SCHOOL SWEETHEARTS. I WAS THE ONE WHO ALWAYS
GOT CALLED BY EVERYONE WHEN SOMEONE WAS ILL I STILL AM. WE WILL BE MARRIED 38
YEARS JAN.31 ST.
I AM BETTER OFF THAN YOU AND HE DOES NOT UNDERSTAND WHY ME. WHAT UPSETS ME AS
I AM SURE WE NEED THEM MORE FOR THINGS WE CAN NO LONGER DO.
HE IS BETTER ABOUT IT NOW BUT HE DOES HAVE HIS MOMENTS.
I AM LIKE YOU I DO THINGS AND THINK POSITIVE. I KNOW I CAN DO SO MUCH MORE
THAN YOU AND I ADMIRE YOUR COURAGE AND STRENGTH .I FEEL THERE IS A REASON FOR
EVERYTHING.
I AM GOING TO BE 56 NEXT MONTH. I HAVE HAD MANY EPISODES OF TM THRU THE LAST
15 YEARS. I GET PARALYZED AT ANYTIME. BUT I ALSO HAD MANY MANY GREAT YEARS.
I PRAY AND HOPE YOU NEVER HAVE ANOTHER EPISODE.
OUR HUSBANDS ALSO HAVE TO VENT.
I KNOW THEY DO A SURGERY SIMILAR BUT ON YOUR COLON A COLONOSCOPY. HER WHOLE
IS TINY AND SHE JUST WEARS A BIGGER BANDAID ON IT. SHE TRAINED HER BODY TO DO
THAT. I ALSO KNOW A GIRL WHO HAS NO BLADDER. SHE URINATES WHEN SNE HAS A BOWEL
MOVEMENT. THERE IS SO MUCH TECHNOLOGY NOW I THINK WE WILL BE OK.
KEEP UP THAT GREAT ATTITUDE, I KNOW YOU WILL DO FINE WITH YOUR SURGERY.
GOD BLESS YOU TIAD PAM
-
Get a sneak peek of the all-new AOL.com.
-
Boardwalk for $500? In 2007? Ha!
Play Monopoly Here and Now (it's updated for today's economy) at Yahoo! Games.
PeoplePC Online A better way to
Internet http://www.peoplepc.com
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Yahoo! oneSearch: Finally, mobile search that gives answers, not web links.
Re: [TMIC] Neurologist, Rheumatologists
My internist said I am going to send you to a new Neurologist - he is very good not like your typical neurologist. He wud know more on TM, than me. I am very disappointed in him alot cuz all the problems I've had in the past and he never wanted to get involved - like he doesn't have the time doesn't care. And yet I hear people praise him. I don't understand it. Natalie M. cakalley [EMAIL PROTECTED] wrote: Natalie, My Nero also doesn't keep up on the latest on TM. He did know enough after ruling everything else out, that it was TM. However, he did not know about the Plasma Exchanges. It was only after my sister gave him the John Hopkins website and info. that he called and investigated the PLEX treatments. He's told me that he has tried it on several other patients - some helped some didn't. What I do now, is take in the TM digest when I get it and point out certain items to him. Sometimes he takes it and makes copies of an articles or other articles that he has found when he has flipped thru it. I have also printed out info from here and what I have found out on the web and take these in also. He'll flip thru them, stop and look at different items that he finds interesting. Hopefully, he will read and get curious and then from there do more investigation. If you ever watch the Discovery Health channel, many patients or relatives of patients, have to do all kinds of investigating not only of symptoms but also on specialists in the field of problems. My GP is better at looking things up than my Neuro BUT both are males and you know males are least likely to ask for directions. Well this is my novel - Sorry. Candy K. -Original Message- From: natalie mizenko Sent: Aug 3, 2007 7:29 PM To: Transverse Myellitis Subject: Re: [TMIC] Neurologist, Rheumatologists Regina, You have every right to vent. We all have to vent every now and then. I went to my back surgeon who had done 3 surgeries on L5-Sl the last 2 years, finally the last surgery he fused it. I had Cauda Equina Syndrome. I had heard that it could paralyze you, very rare tho. Well, he said it was not related to Cauda Equina was not anything from L5-Sl. He didn't know for sure cuz I couldn't have an MRI. I had a dorsal column stimulator in for pain (14 years it was still in didn't work) but I cud not have MRI's due to the magnetic leads attached. So he left went on vacation for 2 wks. he sent me to a Rehab. I think he should have sent me to one of his co-doctors, but he did not. By the time he was back both legs were paralyzed and it was too late for any treatment to work. And my internist to this date says I don't know hardly anything about TM. Why doesn't he eduate himself on it? P.O.'s me, ya know? An a internist of all things. It was very ironic, but another person in my internist's office got TM within a couple mths. of me getting it. I went in for pain control (hospital). Another dr. was on call he said it is ironic as rare as TM is; I have a patient upstairs I'm doing steriod treatment on to try and reverse it. He said I didn't know anything about it, til I looked up the symptons on the internet. I felt like saying will you eduate you partner on it, my dr.? But, I did not. I think one day I'll print out literature and give it to him the next visit. Geez, I ended up venting. I guess it's the day. Natalie M. Regina Rummel wrote: I was diagnosed with Sjogrens in the mid-80s and that's when I started seeing a rheumatologist regularly. After that, I understood why I had dry eyes and have been using eye drops ever since. I subsribed to the Sjogren's newsletter and joined a group. Many in the group were in bad shape, complications like Lupus, etc. I had no problem beside the dry eye and some fatigue. I learned about autoimmune diseases, possible complications, central nervous system attacks unlikely (so they said at the time), and I profusely thanked my lucky star that all I had to complain about was dry eyes. Then, sometimes in 2004, I woke up with strange sensations in my left leg and sensed my balance a bit off. Checked on line, and found something that described what I felt (peripheral neuropathy), made an appointment with a neurologist that I also began seeing regularly. I didn't see the need to see a GP. Rheum. and Neuro. were taking care of me consulting with one another. That was maybe a mistake, but why also see a third doctor, I thought. Shortly after, when I told the rheumatologist that I didn't feel my bowel movements, she immediately sent me for Cytoxin treatments, an MRI, and put me on high doses of prednisone. I looked at the prescription and read Transverse Myelitis. I had no idea what she was talking about. And of course, I saw the neuro regularly. I progressively got worse in spite of the above treatments, plus IVIG treatment. Nothing helped. The last time I saw my rheumatologist
Re: [TMIC] Wheelchairs
Grace, Yes, that is what I meant. That you had the TMIC address in your address book. Other than that, I have no idea why you are not receiving all the emails. I know that has to be frustrating. Natalie M. [EMAIL PROTECTED] wrote: Yes, I have everybody in my address book...is that what you mean? Our present troubles are quite small and won't last very long. Yet they produce for us an immeasurably great Glory that will last forever 2 Corinthians 4:17 NLT - Get a sneak peek of the all-new AOL.com. - Park yourself in front of a world of choices in alternative vehicles. Visit the Yahoo! Auto Green Center.
Re: [TMIC] Neurologist, Rheumatologists
Regina, You have every right to vent. We all have to vent every now and then. I went to my back surgeon who had done 3 surgeries on L5-Sl the last 2 years, finally the last surgery he fused it. I had Cauda Equina Syndrome. I had heard that it could paralyze you, very rare tho. Well, he said it was not related to Cauda Equina was not anything from L5-Sl. He didn't know for sure cuz I couldn't have an MRI. I had a dorsal column stimulator in for pain (14 years it was still in didn't work) but I cud not have MRI's due to the magnetic leads attached. So he left went on vacation for 2 wks. he sent me to a Rehab. I think he should have sent me to one of his co-doctors, but he did not. By the time he was back both legs were paralyzed and it was too late for any treatment to work. And my internist to this date says I don't know hardly anything about TM. Why doesn't he eduate himself on it? P.O.'s me, ya know? An a internist of all things. It was very ironic, but another person in my internist's office got TM within a couple mths. of me getting it. I went in for pain control (hospital). Another dr. was on call he said it is ironic as rare as TM is; I have a patient upstairs I'm doing steriod treatment on to try and reverse it. He said I didn't know anything about it, til I looked up the symptons on the internet. I felt like saying will you eduate you partner on it, my dr.? But, I did not. I think one day I'll print out literature and give it to him the next visit. Geez, I ended up venting. I guess it's the day. Natalie M. Regina Rummel [EMAIL PROTECTED] wrote: I was diagnosed with Sjogrens in the mid-80s and that's when I started seeing a rheumatologist regularly. After that, I understood why I had dry eyes and have been using eye drops ever since. I subsribed to the Sjogren's newsletter and joined a group. Many in the group were in bad shape, complications like Lupus, etc. I had no problem beside the dry eye and some fatigue. I learned about autoimmune diseases, possible complications, central nervous system attacks unlikely (so they said at the time), and I profusely thanked my lucky star that all I had to complain about was dry eyes. Then, sometimes in 2004, I woke up with strange sensations in my left leg and sensed my balance a bit off. Checked on line, and found something that described what I felt (peripheral neuropathy), made an appointment with a neurologist that I also began seeing regularly. I didn't see the need to see a GP. Rheum. and Neuro. were taking care of me consulting with one another. That was maybe a mistake, but why also see a third doctor, I thought. Shortly after, when I told the rheumatologist that I didn't feel my bowel movements, she immediately sent me for Cytoxin treatments, an MRI, and put me on high doses of prednisone. I looked at the prescription and read Transverse Myelitis. I had no idea what she was talking about. And of course, I saw the neuro regularly. I progressively got worse in spite of the above treatments, plus IVIG treatment. Nothing helped. The last time I saw my rheumatologist was in February of this year. (I'll be venting now.) I had been seeing this woman for 10 years, ever since I moved from L.A. I walked in for the first time with a walker. I was so weak and tired, I could hardly walk. Even though she knows me well, she never asked what's with the walker, what's going on?. Oblivious, she checked me out, filled out all the paperwork, and sent me on my way with a cheerful You're doing great!. I can't even begin to tell you how angry I was. How can a doctor who knows you so well be completely oblivious when she/he sees you walk in with a walker for the first time in 10 years? I called her back the next day and insisted that I get an MRI because I was on the verge of getting a wheelchair and I knew something was very wrong. I got it, and promptly got a call from her telling me that my cord is at risk, make an appointment immediately with the radiologist, he'll take care of it. Again, I didn't understand what an AVM was. The radiologist sent me to a neurosurgeon in San Francisco who apparently was familiar with this AVM thing. I was s happy! I thought he was going to take care of that pesky problem in my spinal cord that had been fermenting for as long as possibly six years he said. My Gosh! I thought, if I had caught it six years ago, maybe I wouldn't have TM now. But who knew? Well, I had the surgery, I went through acute rehab, blah, blah, blah. And I'm back to where I was. No difference. Same struggle, blah, blah, blah Now, I know you're wondering why I'm telling you all this. You've probably heard it from me before. Well, I'll tell you. It's that piece I read last night in the new TMA newsletter on page 20 and I quote Julius Birnbaum, MD:
Re: [TMIC] Wheelchairs
Heather, Why do you have to wait 6 mths. for an appt? Does Canada have a shortage of drs? I was suprized to hear this from Canada. Natalie M. Heather Pieter [EMAIL PROTECTED] wrote: Wow Kevin. You are lucky to be able to have MRI's in the USA. Here we would never cancel and MRI unless really really sick as we would have to wait for another 6 months or more for one. Unless of course it was a life threatening situation and you were in danger of dying. Hope they find out what is wrong. Heather in Calgary - Original Message - From: Kevin Wolfthal To: Sent: Tuesday, July 31, 2007 3:20 PM Subject: Re: [TMIC] Wheelchairs Natalie, I wish I knew why my hands are going numb! First I was told by a neurologist and an orthopedist that it was carpal tunnel syndrome, and ulnar nerve damage, based on EMG results. When I went to the hand surgeon, he sent me for another EMG, and I was told there is damage in many sensory nerves in my arms, so the surgeon said it may not be carpal tunnel, and he wouldn't operate. So now I'm starting all over with new doctors, new tests, and I am fed up with everything. I was supposed to have an MRI of my neck yesterday, but didn't feel well so cancelled. I had a physical a few weeks ago, and my blood tests came back perfect. Even my cholesterol was only 177, which surprised me. Sorry I can't offer anymore help. The last MRI I had of the neck showed a lot of arthritis, but the neurologist said that isn't causing the numbness in my hands. *shrug* Wish you the best, Kevin natalie mizenko wrote: Kevin, Can I ask why your hands are going numb? I just got my first manual w/c. I've been user the store's loaner - it was shipped new to be at Baylor in Feb. or March. I have not had anymore places on me going numb yet. I hope my hands don't give way, as I only have this manual. And I think it's like 5 years before you can have anything else. We don't have a van (my husband I don't think wants to get one, we waited so long or I did to get my Avalon and now he really likes it too for when just he I go out. It makes me have to stay at home alot tho. We just got him a p/u Toyota that is really nice last year. It's the nicest but used like 2 years one he ever had and he doesn't want to give that up mainly. It makes it kinda a hassle to get in out of the Avalon, but he helps me get in alot and out too. I just went to the hospital while ago had my Pic line taken out. I don't see why they don't leave it in as I am in and out of the hospital alot. I will have a surgery in August - it's a major one. All to keep me from being constantly wet even tho I cath every 4 hrs. It will only be a little hole that won't close up, because the skin around it will be like your lips - never shut to. I only have to keep a bandaid over it and cath 7 times a day. No more getting up at nights either. Hope my pain stays down (my out of control pain) from TM when this is done. Take care. Natalie M. */Kevin Wolfthal /* wrote: Bernie, Thanks! I'll check it out. All the best, Kevin Bernard Pelow wrote: Hey Kevin, If you are going for a power chair, I have found the 'Invacare Torque SP' to be the best chair I have ever had over 17 years. It can come in a variety of setups for your maximum comfort. Check it out online at: http://www.usatechguide.org/itemreview.php?itemid=89 Peace, Bernie Kevin Wolfthal wrote: Hi Grace, i don't have a wheelchair, but don't think I can put it off much longer. Do you mind if I ask what kind you have? I'm pretty sure I will need a power chair because my hands are going numb. ;-/ Kevin Grace M. wrote: Oh Priscilla, tell me about it!!! I looked just like a big ol middle aged Raggedy Anne (Or an elderly Bette Davis) lying there in the bushes. And you know how it is whenever part of your body is paralyzed---the legs just flop into these impossible positions. Plus, to add to my utter humiliation, my bladder let go and I was soaking wet whenever they hauled me up. That poor young man who attempted to snatch me from the jaws of certain death, didn't know if he should laugh or cry---we decided on laughter. He had fallen in a roofing accident and broken his back. Can you imagine if he had managed to hold onto me and I had pulled him out of his chair? It really could have been a catastrophe. I would much rather have taken my chances at dodging traffic than to have caused him any additional pain. Hugs, Grace (In PA) Fussy? Opinionated? Impossible to please? Perfect. Join Yahoo!'s user panel and lay it on us. -- No virus found in this incoming message. Checked by AVG Free Edition. Version: 7.5.476 / Virus Database: 269.11.0/927 - Release Date: 7/30/2007 5:02 PM
Re: [TMIC] Wheelchairs
Cody, Thanks for all the good info. I already have a transfer board and yes, we use a pillow case for the wet shower thing. It does really help! We got all the info. at Baylor. It was such a great place to be. I'm glad we left Arkansas and went there (I thought of it after being in 2 bad and small rehabs.) I think God put the name Baylor in my head. I just wished I had thought of it sooner. But hindsight, well you know. Anyways, I have a transfer board that is a super slick one. They use this kind at Baylor. Mums the word, but a Physical Therapist on my last day at Baylor gave me the one I was using on my last session at like 4:30 pm when everyone else was gone from the mat room. They are like $100.00 a piece I was told. Then I have a longer one from another rehab. here in Ark. that I use for the car. It is better for car transfers. Today a cable man was at the door and he ranged the doorbell. Well, I was rushing to get into my chair. My husband says, Get the board under your butt, well, I use to put it under my legs, which is easier. Anyways, I can only get it like 6 inches under my bootie and it was caught on the cotton pads that had moved w/ me. Between rushing and the shortened board under me, I went down. This new w/c is short in the front. Well, I went to a Spinal Cord dr. who is really big in Little Rock, ARk. he said the chair could be raised that would prob. help. I think that was the reason my old one, I didn't have these problems with. So, I called the man in L.R. who I got my chair from he is coming next week to check it out. And my right leg was caught on the lever that parks it so, I had to get my pants off that and they were tight on it. What a mess I had falling. Thanks again for the tips, Natalie M. Cody [EMAIL PROTECTED] wrote: NatalieWe actually live about ten miles west of Austin in Bee Caves which is at the intersection of Highway 71 and FM 2244(Bee Caves Road) if you remember. I thought I would just share a few things with you since I have been in a manual chair for just over six years now. Transfers to and from your chair are easier if you have the right tools. One is a lamminated wooden sliding board rather than a plastic one. There is a disabled fellow in San Antonio that sells them for about $20.00 each. Also when you are transferring without clothes on, like out of the shower, you can put a pillow case over the board and you can slide right across even if your skin is wet. The company in San antonio is Accessible Designs. I can get his phone number if you need me to. A couple of points on wheelchairs. The rigid frame seems to be a little more stable than a folding chair. However I must say that my second chair was a folding Ultra Lite and I have no desire to switch back to the rigid. Primarily because the folding is much easier for my wife to load and unload and it will fit into most regular size car trunks. It will definitely fit in the Avalon. We have a Buick LeSabre and my wife puts it in the trunk with a basketful of groceries. (She is a good packer.) I have also loaded the chair into the inside of the car by myself. You get in the car, then first lean out and remove the wheels and seat cushion and load them in the back seat. You will also need to remove the support back unless you just have the canvass back that comes standard with the chair. Then the most difficult part, you snap the rest of the chair including the foot rest together and pull it into the car over your chest and into the back seat. You must have the seat pushed back as far as possible to give you plenty of room. You need to do this slowly so you don't scratch or mess up the interior of the car. Needless to say my wife does most of the driving because loading that chair into the car is just to difficult. The next point is the tires. They make a wheel with solid rubber tires. It is not the old standard gray wheel chair tires but it is a black soft rubber tire. Inflatable tires are just another aggravation you don't need. Also I am curious if you are Russian because of your name. I lived in Russia for three years and worked with several Natalya's (Natasha for short). I hope some of the information is helpful to you especially on the transfers because you can be so much more independent if you can transfer by yourself.Cody in Austin - Original Message - From: natalie mizenko To: Cody Sent: Sunday, July 29, 2007 8:35 PM Subject: Re: [TMIC] Wheelchairs Hi Cody in Austin, Our daughter was born there in 1981. She is an Architect and her husband is also living in Springfield, MO now. I know Austin has grown leaps and bounds since we've been there. We went back 4 years later to possibly move back it was too big then already. Construction was everywhere. A nice city back then. Has lots to offer. Natalie M. in Arkansas
Re: [TMIC] Wheelchairs
Kevin, Can I ask why your hands are going numb? I just got my first manual w/c. I've been user the store's loaner - it was shipped new to be at Baylor in Feb. or March. I have not had anymore places on me going numb yet. I hope my hands don't give way, as I only have this manual. And I think it's like 5 years before you can have anything else. We don't have a van (my husband I don't think wants to get one, we waited so long or I did to get my Avalon and now he really likes it too for when just he I go out. It makes me have to stay at home alot tho. We just got him a p/u Toyota that is really nice last year. It's the nicest but used like 2 years one he ever had and he doesn't want to give that up mainly. It makes it kinda a hassle to get in out of the Avalon, but he helps me get in alot and out too. I just went to the hospital while ago had my Pic line taken out. I don't see why they don't leave it in as I am in and out of the hospital alot. I will have a surgery in August - it's a major one. All to keep me from being constantly wet even tho I cath every 4 hrs. It will only be a little hole that won't close up, because the skin around it will be like your lips - never shut to. I only have to keep a bandaid over it and cath 7 times a day. No more getting up at nights either. Hope my pain stays down (my out of control pain) from TM when this is done. Take care. Natalie M. Kevin Wolfthal [EMAIL PROTECTED] wrote: Bernie, Thanks! I'll check it out. All the best, Kevin Bernard Pelow wrote: Hey Kevin, If you are going for a power chair, I have found the 'Invacare Torque SP' to be the best chair I have ever had over 17 years. It can come in a variety of setups for your maximum comfort. Check it out online at: http://www.usatechguide.org/itemreview.php?itemid=89 Peace, Bernie Kevin Wolfthal wrote: Hi Grace, i don't have a wheelchair, but don't think I can put it off much longer. Do you mind if I ask what kind you have? I'm pretty sure I will need a power chair because my hands are going numb. ;-/ Kevin Grace M. wrote: Oh Priscilla, tell me about it!!! I looked just like a big ol middle aged Raggedy Anne (Or an elderly Bette Davis) lying there in the bushes. And you know how it is whenever part of your body is paralyzed---the legs just flop into these impossible positions. Plus, to add to my utter humiliation, my bladder let go and I was soaking wet whenever they hauled me up. That poor young man who attempted to snatch me from the jaws of certain death, didn't know if he should laugh or cry---we decided on laughter. He had fallen in a roofing accident and broken his back. Can you imagine if he had managed to hold onto me and I had pulled him out of his chair? It really could have been a catastrophe. I would much rather have taken my chances at dodging traffic than to have caused him any additional pain. Hugs, Grace (In PA) - Fussy? Opinionated? Impossible to please? Perfect. Join Yahoo!'s user panel and lay it on us.
Re: [TMIC] Re: TM Reflexes
Barbara A., Thanks for the info. I've used a loaner since March, but this is my own. It's an ultra-lite, but not a ridged back, has like a ridged front is - metallic blue in front. Nice looking w/ tube arms. I really was not going to have the folding back but I think it is easier since we don't have a van just an Avalon to take me in - it might not fit to get it in and I was concerned about that. It has the pneumatic tires on it, but they put something else in them to help if one were to hit a nail, it all wouldn't go flat. I love the ride of it and being all thru Wal-Mart the other day made me realize how smooth a ride it is. It has a short front to the seat area clearance, so I am close to the front and it would be easier for me to land on the floor. I take it very carefully coming down from the bed w/ it. Our bed is higher than the chair. I haven't transferred out of the new one on my own. I think it would be harder as this front is so different. Have a nice day and hugs back. Thanks, Natalie M. [EMAIL PROTECTED] wrote: Hello Natalie, Getting a wheelchair, whether manual or electric, can be quite an adjustment mentally. It was something that we had to get used to when I was in in-patient rehab, both inside the building and outside in public. But, it only took a bit of the sting out. It takes time. One thing is that you seem to see yourself differently. You also do not see as much above your eye level when out in public, unless it is far away from you. I actually hate going shopping with my husband, as he rushes by things, and always forgets what I do or do not see. There can be positive aspects too. You may be able to do things that you have struggled to do as you can sit down and move about. Just give yourself some time to adjust. I think that you will, and I know it is not the way you envisioned this part of your life. It's not mine either, but it's what you make of it that counts. Hang in there, and you can unload and vent any time you need to. Hugs to you, Barbara A - Get a sneak peek of the all-new AOL.com. - Ready for the edge of your seat? Check out tonight's top picks on Yahoo! TV.
Re: [TMIC] Wheelchairs
Grace, This might sound dumb, but when you happen to take a spill, how would Life-Alert get in your door? I've wondered, because of I were to happen to ever need it, I wouldn't know how they would get in you know. Thanks, Natalie M. Grace M. [EMAIL PROTECTED] wrote: Hi Kevin, Right now I have a manual chair. I'm little, but have very strong arms from all of the exercising. My one hand is a little weak, but if I need to, I can still maneuver fairly well. I've been out of the chair and walker for a little over a year, and have done well, but I keep it at the ready. If I were to get a power chair, I think that I would buy a Jazzy. I once took care of a young woman with cerebral palsy, and she had a Jazzy chair. Very easy to maneuver, and lots of different position adjustments to keep her comfortable. She had a chin control, but due to her disease was unable to use it, so getting the chair was more of a comfort issue than anything else. The only thing that I am concerned about, is being able to maneuver in this apartment. It's very small, and the doorways are not wide enough to really make it around the corners. I have an application in for another one that is completely handicapped accessible, but who knows when I will get in. Also, my floors are very slick where they are not covered by carpet, and I've taken some pretty bad spills since living here. I do have Life Alert . You know what I meanI've fallen and I can't get up!---and also two emergency pull cords, so I guess that I have some little measure of safety. Grace Grace M. wrote: Oh Priscilla, tell me about it!!! I looked just like a big ol middle aged Raggedy Anne (Or an elderly Bette Davis) lying there in the bushes. And you know how it is whenever part of your body is paralyzed---the legs just flop into these impossible positions. Plus, to add to my utter humiliation, my bladder let go and I was soaking wet whenever they hauled me up. That poor young man who attempted to snatch me from the jaws of certain death, didn't know if he should laugh or cry---we decided on laughter. He had fallen in a roofing accident and broken his back. Can you imagine if he had managed to hold onto me and I had pulled him out of his chair? It really could have been a catastrophe. I would much rather have taken my chances at dodging traffic than to have caused him any additional pain. Hugs, Grace (In PA) - Got a little couch potato? Check out fun summer activities for kids.
Re: [TMIC] Wheelchairs
Kevin, Sorry you are going thru all this and u sound like me u have pain that doesn't allow u to go to appts. every time they schedule one. I will remember you in my prayers and be hopeful you will find out soon what is going on. I had 3 fusions in my neck when I was in a car wreck in 1987. It took them 5 years to find out I had 3 cracked discs. I had to go to the largest Spinal Institute in the U.S. a suburb of Dallas, in Plano, TX. It was Texas Back Institute and I went back and forth for 3 years. Caused great hardship on finances to have to go so often there. Often times we would get our 5 year old daughter in the car and go there and back in a day. I know my husband was exhausted when we got home. He has been thru so much for me. And then 3 back surgeries in 2 years; then TM fit like 6 months after things were finally going good for us. I don't understand why things have been so hard for us on my ongoing physical problems and pain. He is my anchor or I truly don't know what I wud do. He is not there for me emotionally but hey no one is perfect. Can't complain. He is there for me in every other way. I wish you Godspeed. Natalie M. Kevin Wolfthal [EMAIL PROTECTED] wrote: Natalie, I wish I knew why my hands are going numb! First I was told by a neurologist and an orthopedist that it was carpal tunnel syndrome, and ulnar nerve damage, based on EMG results. When I went to the hand surgeon, he sent me for another EMG, and I was told there is damage in many sensory nerves in my arms, so the surgeon said it may not be carpal tunnel, and he wouldn't operate. So now I'm starting all over with new doctors, new tests, and I am fed up with everything. I was supposed to have an MRI of my neck yesterday, but didn't feel well so cancelled. I had a physical a few weeks ago, and my blood tests came back perfect. Even my cholesterol was only 177, which surprised me. Sorry I can't offer anymore help. The last MRI I had of the neck showed a lot of arthritis, but the neurologist said that isn't causing the numbness in my hands. *shrug* Wish you the best, Kevin natalie mizenko wrote: Kevin, Can I ask why your hands are going numb? I just got my first manual w/c. I've been user the store's loaner - it was shipped new to be at Baylor in Feb. or March. I have not had anymore places on me going numb yet. I hope my hands don't give way, as I only have this manual. And I think it's like 5 years before you can have anything else. We don't have a van (my husband I don't think wants to get one, we waited so long or I did to get my Avalon and now he really likes it too for when just he I go out. It makes me have to stay at home alot tho. We just got him a p/u Toyota that is really nice last year. It's the nicest but used like 2 years one he ever had and he doesn't want to give that up mainly. It makes it kinda a hassle to get in out of the Avalon, but he helps me get in alot and out too. I just went to the hospital while ago had my Pic line taken out. I don't see why they don't leave it in as I am in and out of the hospital alot. I will have a surgery in August - it's a major one. All to keep me from being constantly wet even tho I cath every 4 hrs. It will only be a little hole that won't close up, because the skin around it will be like your lips - never shut to. I only have to keep a bandaid over it and cath 7 times a day. No more getting up at nights either. Hope my pain stays down (my out of control pain) from TM when this is done. Take care. Natalie M. */Kevin Wolfthal /* wrote: Bernie, Thanks! I'll check it out. All the best, Kevin Bernard Pelow wrote: Hey Kevin, If you are going for a power chair, I have found the 'Invacare Torque SP' to be the best chair I have ever had over 17 years. It can come in a variety of setups for your maximum comfort. Check it out online at: http://www.usatechguide.org/itemreview.php?itemid=89 Peace, Bernie Kevin Wolfthal wrote: Hi Grace, i don't have a wheelchair, but don't think I can put it off much longer. Do you mind if I ask what kind you have? I'm pretty sure I will need a power chair because my hands are going numb. ;-/ Kevin Grace M. wrote: Oh Priscilla, tell me about it!!! I looked just like a big ol middle aged Raggedy Anne (Or an elderly Bette Davis) lying there in the bushes. And you know how it is whenever part of your body is paralyzed---the legs just flop into these impossible positions. Plus, to add to my utter humiliation, my bladder let go and I was soaking wet whenever they hauled me up. That poor young man who attempted to snatch me from the jaws of certain death, didn't know if he should laugh or cry---we decided on laughter. He had fallen in a roofing accident and broken his back. Can you imagine if he had managed to hold onto me and I had pulled
Re: [TMIC] Wheelchairs
Pam, I really don't know why. Usually they (whoever puts it in), I think doesn't like to be responsible for having a patient walking around w/ it. I had one in the whole time I was at Baylor, but Little Rock, AR, put it in (a hosp. there). Then, I went to a small rehab, was unhappy by far, and thought where can I go? Baylor and I'm glad I did. It was the best place for me. I wud recommend it to anyone. So many of us and some worse off than you, so I never much felt sorry for myself. I'm just glad I'm not anymore worse off than I am and I hope I don't get TM again. I try not to think of it and negative things. My poor husband, can't get over the anger of it all. While ago, he was helping me while I was getting in or out of my chair I can't recall for sure which and I said You look angry - are you? He said Well he__ yes, this shouldn't have happened to you or anyone. I told him, you MUST get over the anger to be happier. He said nothing. It will take him a longgg time I know. He is just like that. I wish he was more positive but I have never in 30 yrs. of marriage been able to help him w that altho I've tried. Take care, Natalie M. [EMAIL PROTECTED] wrote: I HOPE YOUR SURGERY GOES WELL NATALIE. THE ONLY REASON THEY MIGHT OF WANTED THE PIC LINE OUT IS BECAUSE YOUR HAVING SURGERY TO PREVENT A INFECTION. I REALLY DO NOT KNOW WHY. I AM SURE THEY TAKE BLOOD FROM IT.MY DOCTORS WILL NOT PUT A PICK LINE BECAUSE I GOT TM FROM A FORM OF LUPUS THAT MAKES MY BLOOD CLOT. THEY WANT NOTHING IN ME THAT COULD POSSIBLY CAUSE ME TO GET A CLOT EVEN THOUGH I AM ON A BLOOD THINNER. I GUESS THE ONLY WAY YOU WILL KNOW IS ASK. MY PRAYERS OR WITH YOU AND ENJOY THE WHEELCHAIR. TIAD PAM - Get a sneak peek of the all-new AOL.com. - Yahoo! oneSearch: Finally, mobile search that gives answers, not web links.
Re: [TMIC] Re: TM Reflexes
Grace, Are you in a w/c too? I just got my own w/c this month. I've been in it only 3 times cuz my pain has caused me to be in bed. I'm not sure I like it. Someone I've known a long time has been in a w/c and she said when you get it give it time to adjust to it. Nat M. Grace M. [EMAIL PROTECTED] wrote: Hi Kevin, Whenever I first got sick, I lost my deep reflexes. My diagnosis is Devic's, but of course it was the spinal lesion that paralyzed me, just as in cases of idiopathic TM. I now have what is referred to as a *brisk* kneejerk reflex. Not sure exactly what that means. Am going to go and look right now. Grace PeoplePC Online A better way to Internet http://www.peoplepc.com - Got a little couch potato? Check out fun summer activities for kids.
[TMIC] Wheelchairs
Don't worry about it I have a serious question to ask the group and I think I was one of the ones who got started by calling Jude a man, not woman. Serious question: At Baylor my Physical Therapist mentioned for me to get a rigid chair because there were so many that had them, but ordered me a very thick back to go on it. The man I get my w/c from told me he had a folding chair that was alot like the rigid but it folded in the back. It is somewhat like the rigid in the front that it goes inward and the plastic petals don't still out. They are a hard plastic. (And I asked them about that). The rigid as you know have a footplate. Any discussions on your w/c's what you like/dislike, etc?? Thanks, Natalie M. - Building a website is a piece of cake. Yahoo! Small Business gives you all the tools to get online.
Re: [TMIC] Announcement
Grace, Thanks for seeing my humor in the situation. Like I said my apologies to anyone I have offended. If there were a problem w/ any name gender ever in my name I would not be sensitive about it. There's too many other things to be sensitive about or to worry about. Like my dr. has been trying 3 mths or more in getting me a Pain dr. and so far no success. Those are my worries cuz I'm sick of the hospital stays to control my pain. But, we all have our priorities and I've never been a sensitive one either. Sorry tho, Natalie Grace M. [EMAIL PROTECTED] wrote: Oh Natalie, you are so funny...Gunny? A girl? I thought that Semper fi probably gave him away. ;-) GraceP.S.How is Gunny anyways? it's been ages since I've heard from him. I hope that all is well. On 7/9/07, natalie mizenko [EMAIL PROTECTED] wrote: Geez, Now I'm really messed-up here. I thought Gunny was a girl. Don't know why, but just thought that. Perhaps we should have gender added to our invitation upon joining the group. Like our 1st emails! HA! Only joking you all know it. Nat, alias at times Gnat (I am not a bug), usually go by Natalie (as in female form) although I'm losing that Female Form every day I am adding to my paralysis! Oh well, so be it. Natalie M. (Oh Natalie M, because there are 2 Natalie's; therefore, clarifying each one.). Take care to all, Natalie M. [EMAIL PROTECTED] wrote: I have been writing to the List for 5 years now and no one in all that time, until lately, has questioned my gender. I suppose that Jude could be taken either way. To help those of you who wonder whether I am male or female...I am woman, hear me roar! My real name is Judy. And, to answer a couple of other questions regarding gender, which I have not answered in the past because I did not think it was my place... Gunny is a man, and Gilly is a woman. I hope I have cleared things up for the newbies without causing trouble between myself and Gunny or Gilly. I am caucasian, 5'8 before TM, blonde, leggy and beautiful...now I am about 30 pounds heavier and 5 years into paralysis which makes me not so beautiful as people said I was before TM. I owned a hair salon Shear Imagination and had been a hairstylist/ color technician for too many years to count. At age 50, I went back to college for a degree in psychology, was getting a 4.3 grade average and my English prof of two years was pushing me into becoming a writer and confusing the heck out of me. At any rate, I didn't have to make the decision because TM came along and turned me into a paraplegic from high up under my arms to the tips of my toes. I have no feeling/movement/sensation in any of the affected areas and no bowel or bladder. That ought to cover just about all of the pertinent information that people might want to know. Oh, I have a foley catheter that has made my life lots easier than before. Anything else you want to know will have to be said in private email space as this is wasting time on the List. Sorry bout that, Judy Our present troubles are quite small and won't last very long. Yet they produce for us an immeasurably great Glory that will last forever 2 Corinthians 4:17 NLT - See what's free at AOL.com. - Shape Yahoo! in your own image. Join our Network Research Panel today! - Moody friends. Drama queens. Your life? Nope! - their life, your story. Play Sims Stories at Yahoo! Games.
Re: [TMIC] Announcement
Geez, Now I'm really messed-up here. I thought Gunny was a girl. Don't know why, but just thought that. Perhaps we should have gender added to our invitation upon joining the group. Like our 1st emails! HA! Only joking you all know it. Nat, alias at times Gnat (I am not a bug), usually go by Natalie (as in female form) although I'm losing that Female Form every day I am adding to my paralysis! Oh well, so be it. Natalie M. (Oh Natalie M, because there are 2 Natalie's; therefore, clarifying each one.). Take care to all, Natalie M. [EMAIL PROTECTED] wrote: I have been writing to the List for 5 years now and no one in all that time, until lately, has questioned my gender. I suppose that Jude could be taken either way. To help those of you who wonder whether I am male or female...I am woman, hear me roar! My real name is Judy. And, to answer a couple of other questions regarding gender, which I have not answered in the past because I did not think it was my place... Gunny is a man, and Gilly is a woman. I hope I have cleared things up for the newbies without causing trouble between myself and Gunny or Gilly. I am caucasian, 5'8 before TM, blonde, leggy and beautiful...now I am about 30 pounds heavier and 5 years into paralysis which makes me not so beautiful as people said I was before TM. I owned a hair salon Shear Imagination and had been a hairstylist/ color technician for too many years to count. At age 50, I went back to college for a degree in psychology, was getting a 4.3 grade average and my English prof of two years was pushing me into becoming a writer and confusing the heck out of me. At any rate, I didn't have to make the decision because TM came along and turned me into a paraplegic from high up under my arms to the tips of my toes. I have no feeling/movement/sensation in any of the affected areas and no bowel or bladder. That ought to cover just about all of the pertinent information that people might want to know. Oh, I have a foley catheter that has made my life lots easier than before. Anything else you want to know will have to be said in private email space as this is wasting time on the List. Sorry bout that, Judy Our present troubles are quite small and won't last very long. Yet they produce for us an immeasurably great Glory that will last forever 2 Corinthians 4:17 NLT - See what's free at AOL.com. - Shape Yahoo! in your own image. Join our Network Research Panel today!
Re: [TMIC] Cymbalta questions.
Natalie, I couldn't take Cymbalta either for the terrible headaches it gave me. It took like 3 or 4 days for the med. to get out of my system before the headache even stopped. I've never heard of the other drug. I'll ask my dr. about it, esp. if it helps on pain spasms. I'm on 900 mg of Neurotin and 75 Lyrica 3 times a day now and often have to take Vicodin 2 to 3 times a day to keep it under control until I have a huge blow-up and nothing will touch that but going to the ER it seems. And I'm so sick of the hospital. So, I'll ask my dr. about this one. Glad you shared the info. Natalie M. Natalie Boyles [EMAIL PROTECTED] wrote: I got severe gastritis from the first 50mg cap of CymbaltaI took and so had to stop it. But, I did return to taking an old standby Sinequan. It is a tricyclic and not an sri like cymbalta. Sinequan is also extremely cheap. On the Sinequan I had immediate relief of my pain, spasms and numbness. Almost forgot, it also helped with my bladder. When I first asked for the Sinequan my doctors nurse said that they did not like that med and did not use it. But, it is used for pain and in past a neurologist had prescribed it for me for pain. I did a search on the net and found it is still used and recommended for neuro type pain. I tolerate Sinequan extremely well and I only need to take a 25mg PM dose. I still cannot walk real far and if I try to do much I will get pain. But, I can do more and I am no longer in constant pain and my terrible spasms are gone. Natalie Boyles On 7/6/07, Kevin Wolfthal [EMAIL PROTECTED] wrote: Dear Friends, I started taking Cymbalta this week. Can anyone who takes it tell me how long it took to see positive effects? Any side effects? Doctor started me with one-30mg tab per day. Thanks, Kevin - Need a vacation? Get great deals to amazing places on Yahoo! Travel.
[TMIC] Weekend
Hello to Everyone: Hope all of you have a wonderful weekend. Mine last week was lost as I had severe pain I dealt w/ day and night. I pray that yours is good for you! Natalie M. - Be a better Globetrotter. Get better travel answers from someone who knows. Yahoo! Answers - Check it out.
[TMIC] Quad 9
Naomi, I wish for you better health soon. I will pray for you. You care for others so well and you deserve to have the blessings and improved health come back to you as well. I've been down for 3 days. I hated it cause it was the weekend. I wanted to enjoy it so bad w/ my husband I was in so much pain I couldn't even find my pills. He had to get them for me. I was trying all I could to not go back into the hospital. Enough on me. As I said, you will be in my prayers. Natalie M. - Pinpoint customers who are looking for what you sell.
[TMIC] Hello to all
Hi there, Well, I had to go back to the hospital after only 1 day at home. Once again for excruiating pain from my feet to my hips. This has been some of the worse pain I've ever had. Then, after staying there 2 weeks, I got 2 bedsores and I've never, never had any. I was at Baylor Rehab. for 7 weeks and never got one, because they would turn me at night. I am so furious at them. Now, they want to be my home health provider. Geez. My husband and I can take care of me - I'm sick of hospital people right now. How's everyone? I'm sitting up now in my chair as I have to be ready to go to Little Rock (one hour away) to see my urologist. Later, Natalie M. - Ready for the edge of your seat? Check out tonight's top picks on Yahoo! TV.
[TMIC] Hospital Stay
Hello to All, I was taken by ambulance to the hospital out-of-head in excruiating pain. I could barely talk. It began early in the morn. my husband had just went on active duty orders, but is staying here. I didn't want to mess things up for him, so I suffered the pain increase all day. I had pain from my feet, all the way up to my hips. I was hospitalized for 10 days or so and am still suffering from severe foot pain, worse than it was before. My doc. is feverishly looking for me a pain dr. I've been in bed on day just got up to eat and going back. This has been one of my hardest episodes of pain. And I've had pain for 20 years. I'm extremely weak too. And noticed for the 1st times this morn. my joints were even hurting. It took like 15 times or so to push my body up, just to sit up. So, I know I'm weak. I miss you all. Talking with everyone and hope you all are doing your best. I will talk with you hopefully tomorrow if I feel better. Natalie M. - Park yourself in front of a world of choices in alternative vehicles. Visit the Yahoo! Auto Green Center.
Re: RE: [TMIC] ot
Sally, I was wondering what type of affect you have on your body in T6-T8? Numbness, pain? Are you able to walk. I've always wondered when folks get TM in 2 or 3 levels of the spine how it is. If you don't mind, I'm just trying to educate myself on TM. I have it from T12 down and in a w/c. Did you have Rehab in your state? I had to go from Arkansas to Texas for 7 weeks total. Thanks, Natalie [EMAIL PROTECTED] [EMAIL PROTECTED] wrote: I live in Hawaii where it's usually in the 80's - or in cool weather, in the 70's (I know, spoiled, aren't I!) The only weather that bothers me is when it's cold - like when I went to California when it was in the 50's at night. I wore 3 pair of socks and 2 pair of sweat pants to bed. Even in Hawaii, I often wear socks around the house in the cool weather (we don't normally wear shoes in the house here, but leaves our shoes at the door). Sally (T6 - T8, 2005) - Got a little couch potato? Check out fun summer activities for kids.
Re: [TMIC] Getting Humble...
Dear Barbara, How thoughtful of you! I live in Arkansas and I'm totally paralyzed from T12 down. My orthopedic dr. I feel waited to long to have a Medtronics Spinal Cord Stimulator for my neck to be removed by a neurosurgeon so I could have an MRI. He sent me to Rehab and left on vacation. Then, he put me back in the hospital when he returned as I was totally paralyzed on both legs this time. Removal of the stimulator, MRI showed transverse myelitis. By the time I was diagnosed, the steriods I had would not transverse it. Natalie [EMAIL PROTECTED] wrote: Hi Natalie, I just remembered another thing about sand, water, etc. If you take a cruise to the Caribbean (I can help you with one that would be good for you), there are so many people that are so very willing to help with whatever your needs may be. When we got onto the private island that I am thinking of with the wheelchair and huge sand wheels, there were a lot of men just standing there waiting for people to need their services. Of course we tipped these guys, but they were happy to take me anywhere I wanted to go. And it was great for Pete, since they aren't always easy to maneuver. It was worth the few dollars that we gave them for their assistance. I am sure that they'd be happy to help get you into the water as well. These things have a plastic mesh seat, so I''m sure they could probably get you right up to the water. Natalie, do you walk at all or are you totally paralyzed? And, where do you live? I'm determined to get you on a vacation of some sort. Hugs, Barbara - See what's free at AOL.com. - Got a little couch potato? Check out fun summer activities for kids.
Re: [TMIC] Getting Humble...
Diane, Thanks for the compliment. If someone had told me I would have been in pain since 1987 non-stop and on disability since 1994; I would have told them you are crazy. But life hands you a deck of cards that you often wonder why. And then you think I have to go on with the play as the other side would even be worse for my family. My husband says he would have never gone thru what I have, even now. I have to say I do wish so much I had, had less pain in my life, so my husband and I and our child could have done more. My young daughter would not see her mother crying and crying in pain out of her head. It gets so old. I have always for some reason had severe pain come on often. I will turn on tv if it isn't on to try and get my mind off it and then it gets so bad I can't even see the tv for the tears. It would kill me to see my husband go thru what I have. But life must go on somehow, so we can enjoy the good days. Every time I get out of bed I get a drink and come in here to see how everyone is; that is already how important this group means to me. People's stories are people's lives and we all learn something, don't we??? Thanks, Natalie M. Diane [EMAIL PROTECTED] wrote: Couldn't resist it Natalie...you forgot the M. at the end. :) You sound like one courageous lady. Although I learned to walk after TM (sort of) the neuropathic pain only started about five yrs. ago. The doctors have had a time trying to find the right med. Even mild narcotics make me hallucinate. I tried pot but that didn't help much. I take Lyrica which takes the edge off. On really bad days, I take up to 10 Tylenol X-tra. Doc says my liver is working well and there is no harm if I don't overdo. If I sit quietly, the pain isn't as bad. That brings to mind the12 pressure sores.but that's another show. Pain changes who we are, I think. I too get depressed sometimes but it doesn't last very long. I can just imagine 20 + years of it. Whew. Take care, Diane in Canada (TM 1999) From: natalie mizenko To: Transverse Myellitis Sent: Saturday, June 09, 2007 7:48 PM Subject: Re: [TMIC] Getting Humble... Jude, I usually try to sign my name with Natalie M. to tell the difference of us, but sorry I forget the M. this time. It is easy to forget. If you look back over some of my emails I have often used the M. at the end to tell the dif. I am in a wheelchair 24/7 or whenever I decide to get my bootie out of bed. Today was pretty bad and I stayed in bed til my husband got home from work. (He has Air National Guard duty this weekend). My feet are getting severe electrical shocks; I ran short on my duragestic patches cause we were changing them on the 3rd day; not 4th day; as we didn't know. So, I'm sure that is why I'm in pain. I have so time-released Morphine pills, but I took them they don't work as well as the patch does - at least not yet. I could never work w/ the pain I have anyway; I've been in bad pain for 20 plus years; however, being paralyzed makes it even harder I will admit. As I told my husband today which I rarely will admit I get depressed sometimes during the day and he said yeah. He's not a big talker. I understand that, after 30 years of marriage. Natalie [EMAIL PROTECTED] wrote: Hi Natalie, Now there are two of you on the List which is going to cause me unknown difficulties. Please when you write to me, will you let me know that you are the New Natalie or Natialie 2 or something like that? I am so glad that you have found a place where you can find a mixture of information, debates and even joking around. Every once in a while things can get a bit dicey between two or more people, but arguing doesn't last long and we get things out of our systems quickly enough. How does your TM affect you? Are you among the walking wounded or are you, like me, in need of a wheelchair all of the time? Have you told us your story? I take so much medication that my memory is highly compromised so please forgive me if I forget things that you tell me from one email to the next. Eventually, things sink in and I will know who you are. Good to meet you; God Bless You, Jude Our present troubles are quite small and won't last very long. Yet they produce for us an immeasurably great Glory that will last forever 2 Corinthians 4:17 NLT - See what's free at AOL.com. - Be a better Heartthrob. Get better relationship answers from someone who knows. Yahoo! Answers - Check it out. - Get the free Yahoo! toolbar and rest assured with the added security of spyware protection.
Re: [TMIC] Getting Humble...
Jude, I usually try to sign my name with Natalie M. to tell the difference of us, but sorry I forget the M. this time. It is easy to forget. If you look back over some of my emails I have often used the M. at the end to tell the dif. I am in a wheelchair 24/7 or whenever I decide to get my bootie out of bed. Today was pretty bad and I stayed in bed til my husband got home from work. (He has Air National Guard duty this weekend). My feet are getting severe electrical shocks; I ran short on my duragestic patches cause we were changing them on the 3rd day; not 4th day; as we didn't know. So, I'm sure that is why I'm in pain. I have so time-released Morphine pills, but I took them they don't work as well as the patch does - at least not yet. I could never work w/ the pain I have anyway; I've been in bad pain for 20 plus years; however, being paralyzed makes it even harder I will admit. As I told my husband today which I rarely will admit I get depressed sometimes during the day and he said yeah. He's not a big talker. I understand that, after 30 years of marriage. Natalie [EMAIL PROTECTED] wrote: Hi Natalie, Now there are two of you on the List which is going to cause me unknown difficulties. Please when you write to me, will you let me know that you are the New Natalie or Natialie 2 or something like that? I am so glad that you have found a place where you can find a mixture of information, debates and even joking around. Every once in a while things can get a bit dicey between two or more people, but arguing doesn't last long and we get things out of our systems quickly enough. How does your TM affect you? Are you among the walking wounded or are you, like me, in need of a wheelchair all of the time? Have you told us your story? I take so much medication that my memory is highly compromised so please forgive me if I forget things that you tell me from one email to the next. Eventually, things sink in and I will know who you are. Good to meet you; God Bless You, Jude Our present troubles are quite small and won't last very long. Yet they produce for us an immeasurably great Glory that will last forever 2 Corinthians 4:17 NLT - See what's free at AOL.com. - Be a better Heartthrob. Get better relationship answers from someone who knows. Yahoo! Answers - Check it out.
Re: [TMIC] b-day
Todd, Thanks for the b-day wishes. I had a surprise b-day early when my daughter son-in-law were here a couple weeks ago. I have never had that many people in my house all at once. It was great to see them all again. You can't beat good friends and a good family. Natalie Todd Tarno [EMAIL PROTECTED] wrote: Happy Belated Birthday, Best wishes on that wonderful day, Todd in CC, TX natalie mizenko [EMAIL PROTECTED] wrote: My b-day is June 5 ([EMAIL PROTECTED]). Thanks, Natalie M. - Got a little couch potato? Check out fun summer activities for kids. - Shape Yahoo! in your own image. Join our Network Research Panel today!
Re: [TMIC]
Wayne, I would see if your state has a Spinal Cord Commission. Mine does and I've heard they are helpful in alot of ways. Also, I would address this w/ your Attorney General and tell him the issue. I was told w/ Medicare, you are allowed one every 5 years. That is what my w/c supplier said to me. Good Luck, Natalie Wayne Rabalais [EMAIL PROTECTED] wrote: I am wondering if anyone could possibly help me find out if I can get help with getting a new chair? I got my first chair through Christopher Reeves Foundation with a lot of luck and push. Now my chair is about finished and I am in a nursing home. The state will not replace my powerchair. They money is an issue and I have no other means . Is there a foundation or something that could help me? - Sucker-punch spam with award-winning protection. Try the free Yahoo! Mail Beta.
Re: [TMIC] Renal problems
Jude, I am so sorry you are treated like that. I am short somehow on my patches this month and I think it is because my husband I were changing them on the 3rd day, instead of the 4th day. I don't know if my doc. will renew or not. They are so picky about you being on the exact time. Fortunately, I have never been treated like my pain was not that bad undermedicated, except at Baylor Rehab. The dr. believed I had bad burning pain in my feet 24/7 but she wouldn't give me a strong med. to get it under control. I had to wait for a week at least for the build up of neurontin and lyrica to get into my system the patches. That was a big problem there. No one in severe pain was treated w/ proper meds. to control their pain. They were so stingy w/ giving you any pain meds. Like my original dr. there when my morphine pump went empty, he said I've called all over Dallas no one can fill your pump, you'll have to stay here and hopefully not go into withdrawal (I had had it for 10 plus years) hope the patches help (75mg only) or go home. He further stated he had phoned 2 drs. on it. Yeah, that's all the pain docs. in the Dallas area. I told them after that I wanted another main dr. and they approved the change. The next one treated me the same when my pain was so severe w/ the burning. I would tell them I needed something - I was out of my head even at night in excruiating pain and they'd say, you'll have to wait 4 hrs. before you can have a Norco. A NORCO I THOUGHT! THAT'S NOT GOING TO CUT THIS, BUT I HAD TO KEEP MY MOUTH SHUT! Besides there, I've really not ever had a problem w/ ER's. I'm blessed and I'm so sorry you are going thru this. I usually tell them how long I've been in the severe pain, nothing Ive taken is working and my blood pressure will be up and they even give me oxygen. The new ER doc at my hospital now lets them give drugs in your driveway. IV and all. Call your Attorney General or Medical Board and tell them you are not getting proper treatment for your pain when it becomes that severe. What state do you live in? Natalie M. [EMAIL PROTECTED] wrote: What do you tell them when the pain is that bad? They don't believe me when I get that way and tell me that there is nothing stronger than the patches that they can give me. The just treat me like a drug addict and don't do anything else. Love, Jude Our present troubles are quite small and won't last very long. Yet they produce for us an immeasurably great Glory that will last forever 2 Corinthians 4:17 NLT - See what's free at AOL.com. - Food fight? Enjoy some healthy debate in the Yahoo! Answers Food Drink QA.
Re: [TMIC] TM and Chemical Sensitivity
Naomi, I will certainly pray for you. I'm so glad you have someone else to assist you when necessary. I've so afraid my husband is going to get burned out, because he treats me so, so good, but I just have to hope he doesn't. Natalie M. [EMAIL PROTECTED] wrote: Natalie, I was diagnosed with TM about a week after I had flulike symptoms. I was out of state, attending a wedding reception, when I felt a very sharp pain in my neck and left arm. I immediately told my husband I need to go to the hospital. By the time we made it to the elevator, my legs gave out, and I slumped to the floor, unable to breathe. I was at the hospital in less than 20 minutes. By the time I got there, I could only move my left foot. I was in intensive care on a ventilator. The neurologist at that hospital diagnosed me with Guillain-Barré syndrome. The other doctors were not in agreement with him. They said I did not have all the symptoms. Six days later, I was flown back to Michigan where I continue to stay in intensive care . After more MRIs and spinal tap, I was diagnosed with Transverse Myelitis, two days after I got there. I received five sessions of plasmapheresis, after which I got back movement of my left leg and partial movement of my left arm. My right side is still totally paralyzed. I have all the other wacky symptoms such as unable to detect sharp from dull. I can't tell how hot things are but cold is painful. I have nerve pain in my legs, feet, arms and hands. I have numerous other symptoms such as banding, loss of bladder control, etc. I am classified as a C4 quadriplegic. I have a family member that acts as my caregiver, along with my husband. I have to have someone with me 24 hour a day. My insurance doesn't cover the cost of a caregiver. It is a constant battle trying to get the things that I need. Yes, I am in a wheelchair. I think it's amazing that the young lady was able to live on her own. If I just had to use of my hands, I can live on my own as well. I know she is truly an inspiration. There aren't very many quadriplegics who are able to live on their own. I go on the quadriplegic-paraplegic message board also, because I can identify more with the quads than with the TM board members. There are many TMer's who are quadriplegics. I am still trying to get more therapy and hopes that that will help me some. Pray for me. Naomi C-4 quad since July 2, 2005 - See what's free at AOL.com. - Food fight? Enjoy some healthy debate in the Yahoo! Answers Food Drink QA.
[TMIC] b-day
My b-day is June 5 ([EMAIL PROTECTED]). Thanks, Natalie M. - Got a little couch potato? Check out fun summer activities for kids.
Re: [TMIC] b-day
Naomi, Thanks alot for the good wishes. My husband didn't say anything this morn. about my b-day. But he came in first thing and gave me my favorite iced breva (like a cappucino only stronger coffee). I think I spelled it wrong. He said Happy Birthday and further stated he had brought home fried chicken and would cook us macaroni-n-cheese. I was waiting on him to get home as my cathing bag supply had ran out this morn. And I was having to make shift do w/ a zip-lock back and the huge long unsightly catheters. A complete mess-up w/ my home health not bringing me any cathing supplies in 2 months. So, I phoned medicare and they said that I could use my regular excellent cathing supplier and they would not pay money to my home health for catheters, as I spoke w/ them last Friday. So, my b-day present was catheters!!! How many people wish for that kind of gift on their b-day??? Ha! Actually, 2 weekends ago, while my daughter and son-in-law were down, they surprized me w/ my 50th b-day, but no black items were included. I was glad. Here I went and wrote another novel to someone again. Later, Natalie [EMAIL PROTECTED] wrote: Happy Birthday Natalie! I wish you happiness today and all the days following. Naomi C-4 quad since July 2, 2005 - See what's free at AOL.com. - You snooze, you lose. Get messages ASAP with AutoCheck in the all-new Yahoo! Mail Beta.
[TMIC] AVM??
Mark, I don't know what it is either? Something about your veins perhaps???Natalie M. - 8:00? 8:25? 8:40? Find a flick in no time with theYahoo! Search movie showtime shortcut.
Re: [TMIC] Getting Humble...
Jude, I just joined this group about a month or two ago and I already am extremely pleased I finally found someone to talk w/ about TM. I use to go to a Cauda Equina Site, but TM is much worse, especially what it has physically done to me. I never thought in all the world my legs would be gone from me to use. I always told my husband the one thing I would think worse to be would be paralyzed yet here I am, but taking life one stride at a time as I always did. I'm stronger because of it, I will be honest. My husband and I are closer because I had to lean on him some and never before did that happen. I was always so extremely independent. I do miss getting outside for many days in a row til we can fix the ramp and the threshold; so I can at least get out w/ the dog. But once again that's what life has dealt me I think and one must be patient for pieces to fall in place in our lives to get better for us. Regards, Natalie [EMAIL PROTECTED] wrote: I think most of us who have been with the TMIC for a long time -- at least those who have participated -- I know there are many who just read and don't write in -- have laid it all out there about our particular symptoms and issues at some time or another, but don't necessarily bring it up every week. I'm more than happy, though, to share those things when a particular subject comes up or someone asks a question that I think my experience might be helpful in relating. Something I have found, too, is that the more I think about the symptoms I struggle with -- the worse they are, the more magnified they are. Going on and thinking about something else and doing other things takes my mind off of them and thereby relives them just a little. Maybe some are reluctant to share because they are used to others not really understanding -- but that is what so many of us have discovered about the beauty of the TMIC -- that there are people who DO understand. I don't know, but I don't think there are many, if any, who don't share their particulars pains or issues because of pride. Barbara H. http://barbarah.wordpress.com/ In a message dated 5/26/2007 4:37:59 AM Eastern Daylight Time, [EMAIL PROTECTED] writes: This is a subject that I have not seen debated in the five years I have been a member of this exclusive club of amazing, diverse people brought together by a common problem...TM. I recently received an email from someone who has been on the list quite a while. This person has troubles just like the rest of us and we help one another when we can, but I only tonight found out that they are in extreme pain and at times can only sit for a few seconds at a time. Yet, they take any amount of time they can handle to use their knowledge to educate us and promote dialogue between us, in spite of being racked by pain. This person is one of the walking wounded and was, I thought, in pretty good condition. Tonight, I learned that conception has not been true...and I find myself amazed to find the depth of their disability. Now, I am wondering how important it is for us to put on a happy face and keep our infirmities to ourselves rather than getting honest and sharing our limitations with the possibility of connecting with someone else, especially new members in need of knowing that they are not crazy and other people have the same problems that they do? I believe that it is possible to maintain a positive attitude while humbling ourselves enough to show others on the List the true person we are. There are ways to share our pain, frustration, loss, etc. without sounding like a whining baby. Who believes that it is important to put our honest personage out there? Does it help others? Does it help ourselves to talk about things? Or does it serve others better to be stoic about our disease? I'd really like to know... I love you all, Jude T3 to T8, Complete para with no b or b control, and not a lot of hope of ever walking again. Our present troubles are quite small and won't last very long. Yet they produce for us an immeasurably great Glory that will last forever 2 Corinthians 4:17 NLT - See what's free at AOL.com. - Be a better Heartthrob. Get better relationship answers from someone who knows. Yahoo! Answers - Check it out.
Re: [TMIC] Renal problems
Jude, I have been sick of wearing a Depend every since I came home. They are often soaked ever before I cath and I cath every 4 hours. My husband took me to the urologist in Little Rock (1 hour away), but before that appt. I had an internist appt. in L.R. It had been right at 4 hours and I was wearing a Depend. They call my name and we wheel into the exam room and before the dr. even came in the room I was urinating on the tile floor. My husband grabbed paper towels and a large beaker to measure your urine in to cath just to get the rest of what came out. I was so upset. Thankfully I was at a dr. who understood. He is an excellent urologist and two people I know who are picky w/ drs. use him. I told him I could cath and as soon as I get up to get into the chair I am wet again. He said that is because of the TM. It hits both sides of the spine and it will only get worse for you Natalie. And he is not one to push surgeries. He said go home and you all give it some thought. I said, I've thought enough - I want it done. He has scheduled one more office appt. w/ me to go over the surgery in every detail and then the surgery will be scheduled. I hate staying wet. I hate getting out of our leather seats in our car and there is urine sitting on top of it. I hate the constant odor I hate my husband having to constantly wipe my a.. because it is covered w/ urine. I sleep on 2 cotton pads at night plus wearing a Depend and I cath during the night even. I don't want to go to a foley for several reasons, so this is my answer I believe. Even tho I don't want anymore surgeries or in the hospital, I want a better quality of life than this. (Sorry for the novel) Natalie M. [EMAIL PROTECTED] wrote: Natalie, I am so proud of you for having the surgery. What prompted you to make the decision? I have thought about having it done for the longest time, but don't know anyone who has had it done. I will be anxious to hear how you like it and how much work it is. Plus I'd like to know which company you are going with and did you get information online or just from the doctor. I am sorry that you have been in such pain. I wondered why I hadn't heard from you in such a long time. I miss you terribly. I rely on Fentanyl patches every three days, and since other people don't understand my pain, I don't care what they think. I do what I have to do to get through life each day. You take care of you... Jude Our present troubles are quite small and won't last very long. Yet they produce for us an immeasurably great Glory that will last forever 2 Corinthians 4:17 NLT - See what's free at AOL.com. - Park yourself in front of a world of choices in alternative vehicles. Visit the Yahoo! Auto Green Center.
Re: Re: [TMIC] Rectal problems
Hi Jude, I use Miralax and it is like a miracle to my bowels. There is also a prescription capsule that also adds water to the bowels and help on bowel management. It is called Amitiza. I have taken both at times but w/ both of them I get small accidents. I think because both of them has similar properties to the bowel. I have not researched this, but what I've been told by medical professionals. Now Miralax as I've seen on tv lately is non-prescription, but I've used it for years and it is not addictive in any way; still works the same after all these years. Amitiza is a new pill and I guess for those who don't like Miralax it is available in prescription and is just a capsule. I drink my Miralax in orange juice you can't taste it at all - there are no other drinks that work as well, I've tried. I'm sorry you have such a rough go of the bm program, but perhaps one of these will work for you better. Natalie Mizenko [EMAIL PROTECTED] wrote: When I asked about renal failure Gunny informed me that renal failure is actually a kidney problem. So my medical Ignorance showed up again. I was refering to having problems with bowel incontinance. I appoligize for the mistake and I hope noone was confused as I was. Sorry, Rick I made a correction in the subject area of this e-mail. I think that is the rectal area back there. From: [EMAIL PROTECTED] Date: 2007/06/01 Fri PM 05:30:49 EDT To: [EMAIL PROTECTED], Tmic-list@eskimo.com Subject: Re: [TMIC] Renal problems In response to Rick's topic, Renal Failure, I am not even sure what it is and what it involves. I mean I can tell by the name what organs are affected, what brings renal faiilure about and what can we do to be more health conscious? What I would like to know as well, is there anyone out there who has to do digital bowel stimulation and removal while lying on one's side in bed? That is the way that I have to do it and it is gross! Not to mention, tiring. Peace and Prayers, Jude Our present troubles are quite small and won't last very long. Yet they produce for us an immeasurably great Glory that will last forever 2 Corinthians 4:17 NLT ** See what's free at http://www.aol.com. - Get the Yahoo! toolbar and be alerted to new email wherever you're surfing.
Re: [TMIC] June birthdays
Thanks Janh for the birthday wishes as well as the others. This year was my big 50 and my daughter and son-in-law was down. My daughter in one day here planned a suprise 50 b-day w/ my family and friends. Some I had not seen since TM hit me and paralyzed me (T12 down). It was wonderful to see everybody again and I didn't expect it in anyway. I just said to my husband that is alot of chips on the bar. I don't see how the 4 of us can eat them all w/o them going stale. I have a wonderful daughter, son-in-law and husband. My daughter called them all, but my husband did most of the cooking on the grill. I didn't see him put it all on there. So, I was indeed suprised and it was not a black 50. Thank goodness!!! Regards, Natalie- Jan Hargrove [EMAIL PROTECTED] wrote: Happy Birthday to all you June babies!! janh - Need Mail bonding? Go to the Yahoo! Mail QA for great tips from Yahoo! Answers users.
Re: [TMIC] Hi, I sent you an e-card from AOL Greetings.
Hi Jude, That is really cute the b-day card. Thanks, Natalie [EMAIL PROTECTED] [EMAIL PROTECTED] wrote: To view your e-card, please click on the following link: http://greetings.aol.com/view.pd?i=89671268m=7494rr=ysource=aold999 Or, if your e-mail program does not recognize the above address as a link, just copy and paste the link into your web browser's address window. We hope you enjoy your e-card! Please visit us again soon. Go to: http://greetings.aol.com or AOL Keyword: Greetings. The AOL Greetings Team - No need to miss a message. Get email on-the-go with Yahoo! Mail for Mobile. Get started.
Re: [TMIC] Rectal problems
Jude, for some reason my cursor is down at the bottom of the box, it started about 2 weeks ago and sometimes I forget it bring my cursor up. Scroll further down and see if you don't see my message, Thanks, Natalie [EMAIL PROTECTED] wrote: Nothing came through on the List site...try again please. Our present troubles are quite small and won't last very long. Yet they produce for us an immeasurably great Glory that will last forever 2 Corinthians 4:17 NLT - See what's free at AOL.com. - Finding fabulous fares is fun. Let Yahoo! FareChase search your favorite travel sites to find flight and hotel bargains.
Re: [TMIC] Getting Humble...
Hi Barbara all, It is so varying what we all go thru w/ TM. Life can completely change and I've actually talked to a man who fully recovered from TM when mine hit. He was kin to my son-in-law he gave me hope. Needless to say by the time they removed my spinal cord stimulator from me, in order to diagnose my TM by an MRI, it was too late for steriods to work, even tho my dr. tried. I had 3 surgeries in last 2 years on L5/S1 and I thought well if I'm paralyzed there I won't have pain any more (been in constant pain for 15 plus years or more. But, once things settled down the original onset pain was over; I was left w/ 24 hr. burning feet/shock pain or buzzing in my feet. Day before yesterday my leg and feet spasms were all the way up to my hip. I was in severe excruiating pain. But my husband hates for me to go to ER, so I fought it w/ pills. By Friday, I called him to come home I couldn't take it anymore as it has settled in my feet. This is the first time, he called 911 for me. I was out of my head in pain). In the driveway they gave me morphine, but at the hospital they gave me dualdid (sp?) 2 times IV. I was not even sleepy. But it did help on the pain. It bothers me I have to have the hardest drugs there are, but 15 to 20 years of 24 hour pain from my spine, has indeed taken it's toll. My husband tell's me I could never go through what you do Natalie - I would not do it. I had to take a Fiornal today because my headache from all this pain did not go away as I slept last night. Now, live is back to normal today, as normal as it can be. I just have thought all these years of him having to take me to ER and now the ambulance coming for me due to my wheelchair inability at the time of such pain; that's what makes me stronger I hope to live for a better day for him as well as for myself. Sorry for the novel, Natalie [EMAIL PROTECTED] wrote: Kevin, I am sending this to the list and not to your email address as I want the entire list to know how proud I am of you for sending in this email. It is so wise of you to listen to your body, and get the aids that will help you to live your life in as full a manner as possible. Like you, I have had to purchase my own Hugo, but am so glad that I did as I use it everyday. After having TM for eight years, I have learned many things, and still have trouble with some. There are so many things available to us to help us with our everyday lives. If we use them, we can go out of our homes and enjoy our lives as much as possible. This is true for some of us more than others, but we owe it to ourselves to make use of these aids. I'm one of the walking wounded, and still have many aids. I have 2 wheelchairs, one for inside and one for outside. I have 2 sets of canadian crutches, a scooter, 3 canes, a Hugo and a walking stick. I rotate between the manual wheelchair and scooter for shopping malls, traveling, warehouse stores, fairs, anything that requires more than 1/2 block of walking or standing for more than 10 minutes. I use the crutches or cane in the house, the Hugo if I need to carry anything or tired, and the sometimes the walking stick when my brother's around since he made it for me. I use the wheelchair in the house when I've really overdone it and need to give my body a rest or I'm sick and not functioning at all. I have one of the canes in each car at all times, since I've gone out without one a few times and gotten myself stuck being too tired to walk without one a few years ago. And, it's easier to put a cane in a shopping cart than crutches. But, I still haven't been able to agree to have a lift installed on the back of my vehicle for my scooter. I don't want to drive around town with it dangling back there saying here I come, disabled on board! I don't drive around town with my disabled placard dangling from the mirror either, although many do. You really aren't supposed to since it obstructs your view, but I've forgotten to display it a few times. I don't tell all when people ask how I am doing. Actually, I don't think most want to really hear about all the aches and pains that we have. If I'm having a really bad night, my husband knows that it may follow with a bad day. He doesn't know all that I go through, but does hear my crying in the middle of the night sometimes in pain when the spasms get really bad. He knows most of what is going on with me, but most don't. I have very bad pain in my left leg on some days due to 2 DVT's that have caused poor circulation. All I can do for that is take some pain medication. I manage my nerve pain during the day pretty well with Neurontin, but during the night it's a different story. I'd say that most nights I am awake at 3am with the heebie jeebies in my legs, where the skin is so irritable that I cannot allow the other leg to touch or any fabric either.
Re: [TMIC] Renal problems
Rick and others, Have you ever heard of a very small but powerful enema that works for those of us with paralysis or weaken anal spinchter muscles. I always use it, it is called eneemez and you can find them on the internet (ebay is the best cheapest). It has like a gaslike substance I think was told that stimulates the bowel to have a bm. It works wonders, but is a little expensive. I use it every night. It is like $65 to $70. for a 30-day supply. For all of you strugging w/ having a bm I would try this. As far as my renal failure, I have excellent output, but I am very incontinent and altho I cath every 4 hrs. I have to still wear a depend all the time now. And my injury was only in Dec. 06. But I've been cathing for 3 years prior to that. I am having a surgery soon in which I will have a plastice bag on me. After that no more Depends and no more leakage all the time getting me wet. No cathing after that; but that never has bothered me much. Natalie Mizenko [EMAIL PROTECTED] wrote: Dear list, Over these past 9 years of incontinence I have began to put alot of concern in the fact that I see so many people die of Renal Failure. I recently lost a great Aunt with Renal Failure. I do what I have to to try and have a semi-normal bowel movement at least 3 times a week. It has gotten to the point that when I sit on the pot I use a Fleet Eneima with a doucolace additive and they seem to be sometimes effective, sometimes not. Its always a guessing game. I in hope to find an answer through this line to a serious problem. If the list will permit me I would like to start my day by putting this topic up for discussion. Thank You Rick in TN - Get the Yahoo! toolbar and be alerted to new email wherever you're surfing.
[TMIC] File
Does anyone know why the little File icon keeps appearing to the side of my name everytime I email a message? It has been there every since I joined and I don't know how to get rid of it. It bothers me. Thanks, Natalie Mizenko - Ready for the edge of your seat? Check out tonight's top picks on Yahoo! TV.
[TMIC] Reason for TM
To everyone w/ TM: Do most of you know why you got Transverse Myelitis? I was not told a reason why I had gotten it. Even at Baylor University. I don't recall anyone asking me if I had been ill w/ anything prior to the TM. I was just curious to know how your drs. addressed you. One leg was paralyzed after a fall on December 13th and by Christmas I was totally paralyzed from T12 down. It took them too long to determine what I had; therefore, the steriods did not help; although I also realize they don't always aid in recovery. I was sent to a rehab center w/ the one leg paralyzed and became totally paralyzed there. They should have had an accurate diagnosis before sending me to the 1st one; but apparently the one they used was not accurate. I know I was sent there too soon. And the second one I went to I was verbally abused and acquised of saying things I did not say such as to an aide. That is one reason I decided to even leave my state for help and go elsewhere to Baylor. I was treated completely different there - it was certainly worth going there. By the time I returned home I had been gone for 3 months!!! Natalie Mizenko - You snooze, you lose. Get messages ASAP with AutoCheck in the all-new Yahoo! Mail Beta.
Re: [TMIC] Re: Who's got what?
I think I would stay away from her driveway! Ha, Ha, Natalie I bobby jim hijar [EMAIL PROTECTED] wrote: Nope, not every one gets MS. And some never get TM. My neighbor two doors down went right into MS, no TM dx at all. So go figger. She's also on Avonex but the MS is affecting her vision and she's had two wrecks already driving to work. Yikes. Bobberino From: Louise Croyden To: natalie mizenko ; Transverse Myellitis Sent: Wednesday, May 16, 2007 2:24 PM Subject: Re: [TMIC] Re: Who's got what? Hi Natalie, I hope that, in my e-mail, you didn't think I was saying we would all get MS. As I mentioned, MS is only one of the underlying diseases or infections that may have caused the attack on our spinal cords in the first place -- with the resulting demylination of the myelin sheath and nerves which has left at least two thirds of us with life-changing problems. I think we all get confused when we talk about TM turning into something else when it is actually caused by something else. In my case, the inflammation (myelitis) was across both sides of the spinal cord (transverse) and they could not find a definite cause (ideopathic) so the diagnosis was Ideopathic Transverse Myelitis. They believe it happened because of a sinus infection I had just before the attack of inflammation. So far, none of the ongoing tests have shown any other reason and I haven't had a recurrence of TM to indicate something else may be going on. I apologize if my description wasn't clear enough and hope everyone will read the John's Hopkins information as it is really helpful. Regards again, Louise From: natalie mizenko To: Transverse MyellitisSent: Wednesday, May 16, 2007 1:34 PM Subject: Re: [TMIC] Re: Who's got what? When I was at Baylor they first gave me an MRI which indicated the Transverse Myelitis (I had already been diagnosed in Arkansas); anyway while I was sent over to the Baylor Rehab; right before I left my pain was so severe; she said most people w/ TM don't have that degree of pain, so anyways, the dr. ordered another MRI to see if I had a MS; but it was ruled out negative. She said you do not have MS. She told me about the possible reccurence of TM which was slight, but she never told me I would later get MS. I am surprised to see so many saying it will go into that. I haven't read that anywhere but here. Anyway hope everyone pain is better today, Natalie Fussy? Opinionated? Impossible to please? Perfect. Join Yahoo!'s user panel and lay it on us.http://us.rd.yahoo.com/evt=48516/*http://surveylink.yahoo.com/gmrs/yahoo_panel_invite.asp?a=7 hot CTA = Join Yahoo!'s user panel
Re: [TMIC] Re: Who's got what?
Hi Louise, Mine was across both sides also. Because of it being on both sides, it has caused havoc with my urinary problems. I was cathing before I got TM because of Cauda Equina Syndrome; and then learned to cath once paralyzed. My urinary problems have gotten much worse; and I am to have a surgery fairly soon. Probably within a month. After that I will not be cathing anymore and I will stay drier. It's unreal when I look back on my life. A car wreck around mid 20's left me searching 5 years to find someone to find the cause of my severe neck pain. I went to the world's largest spinal clinic at the time, Texas Back Instiute, inwhich they found I had been living with 3 cracked discs for 5 years. 5 years it took to find the right person to tell me what was wrong. I had to say goodbye to a good Federal job, but I didn't have a life per say. Then, a few years later, bending over to pick up a mat from vacumming the inside of my car at a car wash place - it ended up in the road and I had to run in the middle of the road quickly to retrieve it. 2 hours later at home; I got up from the recliner and my back went out; I just about went to the floor. That added to the neck pain that had never left, even after surgery; left me thinking what else could happen. Surely that is it. Then, after having 3 back surgeries for a herniated disc in the last couple years, which finally gave me pain relief in the lower part of my back; I come down w/ more back leg pain; only to be diagosed with TM. I sometimes wonder if my dr. didn't use enough of the IV steriods to try and reverse it. He did it like one day and that was it. Nothing about a plasma exchange, where I've read about as a secondary method to reverse severe TM. So, it's ironic instead of volunteering for a group w/ disabilities several years ago after work; I find myself disabled for a number of years and TM being the worse. My pain goes all over the trunk of my body. It travels from one leg to another into my foot. I was a mess yesterday. I would be today if I hadn't taken enough meds to control it ahead of time. I have never seen a disorder/or disease like this. 20 plus years on a morphine pump and I thought last year after the last surgery - no more severe pain. Little did I know what was ahead for me..we can't control what happens to us; instead we have to take what happens to us and make life better whatever it takes. Sorry for the novel! Natalie Mizenko Hi Natalie, I hope that, in my e-mail, you didn't think I was saying we would all get MS. As I mentioned, MS is only one of the underlying diseases or infections that may have caused the attack on our spinal cords in the first place -- with the resulting demylination of the myelin sheath and nerves which has left at least two thirds of us with life-changing problems. I think we all get confused when we talk about TM turning into something else when it is actually caused by something else. In my case, the inflammation (myelitis) was across both sides of the spinal cord (transverse) and they could not find a definite cause (ideopathic) so the diagnosis was Ideopathic Transverse Myelitis. They believe it happened because of a sinus infection I had just before the attack of inflammation. So far, none of the ongoing tests have shown any other reason and I haven't had a recurrence of TM to indicate something else may be going on. I apologize if my description wasn't clear enough and hope everyone will read the John's Hopkins information as it is really helpful. Regards again, Louise - Original Message - From: natalie mizenko To: Transverse Myellitis Sent: Wednesday, May 16, 2007 1:34 PM Subject: Re: [TMIC] Re: Who's got what? When I was at Baylor they first gave me an MRI which indicated the Transverse Myelitis (I had already been diagnosed in Arkansas); anyway while I was sent over to the Baylor Rehab; right before I left my pain was so severe; she said most people w/ TM don't have that degree of pain, so anyways, the dr. ordered another MRI to see if I had a MS; but it was ruled out negative. She said you do not have MS. She told me about the possible reccurence of TM which was slight, but she never told me I would later get MS. I am surprised to see so many saying it will go into that. I haven't read that anywhere but here. Anyway hope everyone pain is better today, Natalie Louise Croyden [EMAIL PROTECTED] wrote: Hi Everyone, I have been reading all the e-mails about TM and MS, etc., and I have also been confused about it since I was struck by TM in October 2005. According to what I've been told and have read since my TM episode, TM isn't a disease but is a condition caused by an inflammatory response to an underlying disease such as MS, Lupus, an infection As I understand it, some
Re: [TMIC] Re: Who's got what?
When I was at Baylor they first gave me an MRI which indicated the Transverse Myelitis (I had already been diagnosed in Arkansas); anyway while I was sent over to the Baylor Rehab; right before I left my pain was so severe; she said most people w/ TM don't have that degree of pain, so anyways, the dr. ordered another MRI to see if I had a MS; but it was ruled out negative. She said you do not have MS. She told me about the possible reccurence of TM which was slight, but she never told me I would later get MS. I am surprised to see so many saying it will go into that. I haven't read that anywhere but here. Anyway hope everyone pain is better today, Natalie Louise Croyden [EMAIL PROTECTED] wrote: Hi Everyone, I have been reading all the e-mails about TM and MS, etc., and I have also been confused about it since I was struck by TM in October 2005. According to what I've been told and have read since my TM episode, TM isn't a disease but is a condition caused by an inflammatory response to an underlying disease such as MS, Lupus, an infection As I understand it, some of us will later be diagnosed with MS but TM doesn't turn into MS. The TM episode was actually the first demylinating hit of relapsing-remitting MS but there was not enough evidence to diagnose MS at the time. That is why they continue to do tests such as Evoked Potentials and further MRI's in order to rule out or confirm the MS diagnosis. If there is evidence that we actually have MS, then they would start the proper treatment. My Opthamologist told me not to be surprised if they diagnosed me with MS sometime in the future. On the website of the John's Hopkins Transverse Myelitis Centre at http://www.hopkinsneuro.org/tm/disease_and_condition_detail.cfm?condition_id=8 they say that Several diseases may lead to transverse myelitis, and should be investigated at the time TM presents itself. Click on Diseases conditions on the home page for the three sections of information: Transverse Myelitis; Transverse Myelitis Care and Transverse Myelitis Associated Diseases. Under the list of underlying diseases that cause TM, they include some possible infectious diseases such as hepatitis A,B or C, Lyme disease or Mycoplasma pnuemonia. There are also separate headings for Lupus, MS and Vascular Disease. If anyone hasn't yet checked out the information from the John's Hopkins TM Center or hasn't looked at it for a long time, it has been updated with more information since I first read it in early 2006 and has answered more of my questions. I hope this helps. I just keep hoping for a minor miracle to help all of us whose lives have been changed so dramatically by whatever disease caused our TM and keep looking for ways to cope in the meantime. Regards to everyone, Louise - Original Message - From: [EMAIL PROTECTED] To: [EMAIL PROTECTED] ; tmic-list@eskimo.com Sent: Tuesday, May 15, 2007 10:22 PM Subject: Re: [TMIC] Re: Who's got what? Patti, My doctors told me that someone with TM will only have a re-occurrence if they had underlying illness such as, MS, Sarcoidosis or some other autoimmune disease. I can't imagine going back through what I went through(total paralysis from neck down). It was hard enough to survive the first time. I would just give up the second time. Naomi C-4 quad since July 2, 2005 - See what's free at AOL.com. - Finding fabulous fares is fun. Let Yahoo! FareChase search your favorite travel sites to find flight and hotel bargains.
RE: [TMIC] Pain
Larry, It amazes me that dr.'s where able to diagnose your TM 30 years ago. Can I ask what state your lived in? What type of dr. back then was knowledgeable enough to diagnosis it? 30 years is a longgg time for TM - wow... I've been in chronic pain for neck and back pain for 20 years. I have never gotten use to pain. I do realize if you get your mind off your pain; it is helpful. One learns all kinds of tricks and trades just to ease the pain. Thanks, Natalie Larry Throne [EMAIL PROTECTED] wrote: My legs throb, burn and ache 24/7, and it has only gotten worse over the years. I have taken just about everything and none of them really ever eliminate the pain discomfort. I think I have just gotten used to it. That along with the constant fatigue and back/trunk pain have all stayed mostly the same. It used to leave me very depressed which helped me develop a dependence on narcotics and even alcohol. I stopped drinking or taking any pain killers or benzodiazepines 18 years ago. As I said, I was never able to find anything that worked for me but I have been taking cymbalta and that has helped with the depression. After living with TM for over thirty years I have also begun to experience age related problems. Arthritis in my hands and shoulders as well as loss of muscle strength control have continued to plague. But Oh, well! All I've even known to do was keep on going. I go slower than most people and it takes me longer to accomplish many task. But I keep doing as much as I can. I have lost a lot of ability over the last ten years but so have most people my age. It's frustrating to know there are things that I could do but can no longer muster the strength or stamina to master. But I keep on going. Don't give up! At some point, I was able to look behind me and say, hey, I survived! Larry in Oklahoma where it is absolutely beautiful today! Larry Throne, MSW - From: natalie mizenko [EMAIL PROTECTED] To: Transverse Myellitis tmic-list@eskimo.com Subject: [TMIC] Pain Date: Sat, 12 May 2007 11:43:54 -0700 (PDT) I have moderate to severe pain in my feet 24 hours a day. They tried tons of drugs while I was at Baylor Rehab. to get it under control. Many nights I couldn't even sleep still up at 8:00 to 4:00 to do all the exercise groups and training they had. Exhausted I was indeed then...but they didn't like you missing a course. Very intense training. Anyway, who else has burning pain like this in their feet all the time? It really never, never leaves me. I was checked on an MRI for MS cause my pain was so severe. Dr. said my pain was out of the norm to be as severe as it was but she believed it was real. Natalie - Moody friends. Drama queens. Your life? Nope! - their life, your story. Play Sims Stories at Yahoo! Games. - Catch suspicious messages before you open themwith Windows Live Hotmail. - Luggage? GPS? Comic books? Check out fitting gifts for grads at Yahoo! Search.
[TMIC] Pain
I have moderate to severe pain in my feet 24 hours a day. They tried tons of drugs while I was at Baylor Rehab. to get it under control. Many nights I couldn't even sleep still up at 8:00 to 4:00 to do all the exercise groups and training they had. Exhausted I was indeed then...but they didn't like you missing a course. Very intense training. Anyway, who else has burning pain like this in their feet all the time? It really never, never leaves me. I was checked on an MRI for MS cause my pain was so severe. Dr. said my pain was out of the norm to be as severe as it was but she believed it was real. Natalie - Moody friends. Drama queens. Your life? Nope! - their life, your story. Play Sims Stories at Yahoo! Games.
Re: [TMIC] Another Symptom
Yes, a neurologist saw me in the hospital and he said that I didn't have spasticity because he moved my foot and it was floppy like ever. He said see you have no spasticity. Natalie [EMAIL PROTECTED] wrote:I believe spasticity involves rigidity rather than flopping or jerking movements. From the National Institute of Neurological Disorders: 'Spasticity is a condition in which certain muscles are continuously contracted. This contraction causes stiffness or tightness of the muscles and may interfere with movement, speech, and manner of walking. http://www.ninds.nih.gov/disorders/spasticity/spasticity.htm Barbara H. http://barbarah.wordpress.com/ In a message dated 5/4/2007 8:34:47 PM Eastern Daylight Time, [EMAIL PROTECTED] writes: Don't they call this spasticity..? Bobberino From: Trudy To: 'Natalie Boyles' ; 'Alton Ryder' Cc: [EMAIL PROTECTED] ; tmic-list@eskimo.com Sent: Friday, May 04, 2007 1:07 PM Subject: RE: [TMIC] Another Symptom I too have had my arms flail away when I have fallen asleep in a chair watching the awful news or reading the even more depressing paper⦠I donât think it happens when I am flat in bed. Tho I have been known to give my husband a big kick once in awhile⦠Of course he probably deserves it!! J ⦠He is my heroâ¦. Trudy - From: Natalie Boyles [mailto:[EMAIL PROTECTED] Sent: Thursday, May 03, 2007 5:48 PM To: Alton Ryder Cc: [EMAIL PROTECTED]; tmic-list@eskimo.com Subject: Re: [TMIC] Another Symptom Okay you guys, you sound like my husband and he is healthy --- I wonder. He flaps his arms and jerks his legs in his sleep so badly, I must leave the bed. If you find an answer to this dilemma please let me know about it. I am tired of being beaten. Natalie On 5/3/07, Alton Ryder [EMAIL PROTECTED] wrote: I have something similar. Sometimes, when I am lying down during the day and I start to nod off, both arms will fly forward and the left leg might jerk towards my head. Not always, but it always wakes me.It doesn't happen when I go to bed. If either hand is holding something, that hand will not participate. Alton, who thought this unique and now no longer - See what's free at AOL.com. - Ahhh...imagining that irresistible new car smell? Check outnew cars at Yahoo! Autos.
Re: [TMIC] Help
Tonya, Thanks for the info. Fort Smith is like 3 hrs. from us. Perhaps my back surgeon I am soon going to will help me find a good neurologist or other pain dr. I think I need a pain dr. because I am on fentanyl patches and I don't think neuros. can prescribe them regularly; but not for sure if they can. I thought you always had to go to pain drs. when you were on #2 narcotics. Thanks again, Natalie [EMAIL PROTECTED] wrote: Natalie: I am in far eastern Oklahoma and my neurologist is at Ft. Smith at the Cooper Clinic. She has been good with me, though I've not had much pain to deal with. I was referred to her at onset by my pcp, and she came up with the TM diagnosis very quickly. I still see her every six months. Tonya Phillips. Cora Hi to all, Does anyone in the group live in Arkansas and go to a pain dr. in North Little Rock, or Little Rock? I am on the search of a pain dr. for my pain meds. I don't have much luck w/ them in my experience they are becoming here more more like Gods. My pcp dr. faxed info about me having a stimulator a morphine pump etc. to a new pain dr. in our little town (Hot Springs, AR). The nurse called and asked me about the stim. and pump. I told her the stim. had been removed so I could have MRI's this past year and the morphine pump went dry while I was at Baylor and I planned to have it removed. I told her I was on patcvhes at the present. I NEVER was even given a consultation appt. w/ this dr. and he turned me down said I needed to go to a neurologist. I've been in the same pain clinic for 15 years til this month since my pump is empty, the pain dr. I was using canceled me out. He also got mad at me when a back dr. in the hospital gave me a pca pump to control my pain it made him furious last year. It's a mess. Natalie - We won't tell. Get more on shows you hate to love (and love to hate): Yahoo! TV's Guilty Pleasures list. - Ahhh...imagining that irresistible new car smell? Check outnew cars at Yahoo! Autos.
Re: [TMIC] exercise
Akua, I was taught at Baylor to us barbells alot. My O.T. I have uses them alot with me. She had me do biceps, tricepts. take my arms out straight from my wheelchair lift my arm staright out from the bottom to where my arm was straight with one exercise w/ them; I have a sheet she gave me. If you want I can send you the sheet of paper. It shows the exercises. Also I was given an exercise that someone else has to help you w/ once a week to keep some problem from occuring w/ your hips later on. I've been home now for 2 mths. and we haven't done the hip exercise and I told my husband last night, this weekend we have to start. I plan to keep the barbell exercises up. If you could get home health in your house and get a good O.T. or P.T. to show you some that would sure help you. Let me know if you want me to send you the paper or not. Natalie Akua [EMAIL PROTECTED] wrote: Todd thanks so much for this. I won't get the video as I'm only dvd capable, but am inspired by the idea and will seek other sources for sittting exercises. People have chided me-- why don't i have an motorized chair--- you should use a motorized chair. I am grateful that 've resisted. The only exercise i get is rolling myself around and this compared to the many hours i spent gardening and the miles a day i sued to walk--- it's the least i can do. The thing is, I weigh much less than i used to. My nursing home time with it's fake inferior food that i refused to eat led me to lose about 60 pounds. I've gained some of it back since i am able to feed myself more healthfully again, but the inability to buy food with the ease I used to has kept my weight down. It is so hard for us to do any exercise at any stage of TM. I don't know if this will help or not, but this is a link that we have shared here. Here is the site for the sitting exercise video. http://www.richardsimmonsstore.com/index.php?product=VHS01 Light and healing, Akua -- http://www.healrecover.blogspot.com http://www.akualezli.blogspot.com - Ahhh...imagining that irresistible new car smell? Check outnew cars at Yahoo! Autos. - Ahhh...imagining that irresistible new car smell? Check outnew cars at Yahoo! Autos.
[TMIC] Help
Hi to all, Does anyone in the group live in Arkansas and go to a pain dr. in North Little Rock, or Little Rock? I am on the search of a pain dr. for my pain meds. I don't have much luck w/ them in my experience they are becoming here more more like Gods. My pcp dr. faxed info about me having a stimulator a morphine pump etc. to a new pain dr. in our little town (Hot Springs, AR). The nurse called and asked me about the stim. and pump. I told her the stim. had been removed so I could have MRI's this past year and the morphine pump went dry while I was at Baylor and I planned to have it removed. I told her I was on patcvhes at the present. I NEVER was even given a consultation appt. w/ this dr. and he turned me down said I needed to go to a neurologist. I've been in the same pain clinic for 15 years til this month since my pump is empty, the pain dr. I was using canceled me out. He also got mad at me when a back dr. in the hospital gave me a pca pump to control my pain it made him furious last year. It's a mess. Natalie - We won't tell. Get more on shows you hate to love (and love to hate): Yahoo! TV's Guilty Pleasures list.
[TMIC] Message
I just replied to Gunny a message about 2 hours ago on Lyrica and it still hasn't posted. Would there be a reason it hasn't?? Thanks, Natalie - Ahhh...imagining that irresistible new car smell? Check outnew cars at Yahoo! Autos.
[TMIC] Cauda Equina?
Did anyone in the group have Cauda Equina before they had TM? I use to belong to a support group for that and it reminds me of this one in a way? Thanks, Natalie - Ahhh...imagining that irresistible new car smell? Check outnew cars at Yahoo! Autos.
[TMIC] New member
Hello to all, I just joined the group this week. I got early signs of TM around the 2nd week of Dec. 06 and by Christmas I was completely paralyzed from TM. My dr. tried using steriods by it didn't reverse my TM at all. I went to a couple small rehab. centers nearby, but by the 2nd one, I had decided I wanted to get out of a small one and go to a bigger one to Baylor Rehab. I recently returned from there, this month actually. I hope you all get this - I wasn't for sure if I used the correct address. Natalie - Ahhh...imagining that irresistible new car smell? Check outnew cars at Yahoo! Autos.
[TMIC] My Story
Candis asked for my story so here goes Around the 2nd wk. of Dec. 06 I was walking back to bed from the restroom and collapsed in the floor. I stood up only to find I could walk on one leg only. On Dec. 13th my husband took me to Little Rock, Arkansas, to a hospital there where my back dr. had privileges. He had some tests given and told me Natalie it is not a surgery case this time -- something else is happening. He was going on vacation the next week, so I had to go to a rehab center - which was awful. The dr. was sooo mean and they kept trying to make me walk and I couldn't. My doc. returned back and put me back into the hospital. I had my spinal cord stimulator removed and that night had an MRI. Soon, he told me I had TM. He said I will give you some steriods and try and reverse it. He gave me some (don't know how much) and asked me the next day do you feel any more, like below T12? Which is the area of my injury. I said no. This was repeated the next day. I was then asked which rehab center did I want to go to? . The one I wanted to, was too full, so once again I went to a small one. Not much better than the other one. I decided within the first week of attending there, I wanted to get to a bigger place and be exposed to more than I was already seeing what was around me. I told my family Baylor in Dallas. So I went there for 6 wks. of rehab. About one mth. ago I returned home, having been gone a total of 3 mths. since TM had hit me. I was cathing before this happened, but standing up which I found was the easiest way to for me. I once again taught myself to cath at Baylor while sitting in bed, but after my last hospital stay having had a foley in me for a couple days; my bladder has gone crazy. I'm to see my urologist in L.R. next week, but I have a malignant tumor (MRI in TX) picked it up on my kidney and I bet he will focus on that instead. It's not a big tumor now. I'm more upset about all this urine everywhere after I cath Oh welland so it goesNatalie - Ahhh...imagining that irresistible new car smell? Check outnew cars at Yahoo! Autos.
