Re: Fw: [TMIC]
Janice,So glad you found this website. You have really been thru a tough time. Your family sounds awesome! I too refer to my husband now as my hero He has been incredible and my kids and my friends also. This is good place to share your worries and your fears because we have all been there. I have had TM since 2002, it struck in the middle of the night, I was paralyzed from the waist down. I use a walker and have come a long way. So hang in there! Trudy On Fri, Mar 6, 2009 at 10:08 PM, Janice jan...@centurytel.net wrote: I am going to tell my story because I feel odd man out!Also because you all have already been so giving and including of me. I thank you so much. The 2nd week in January, 2007, I had weakness in my legs. I did water aerobics, so thought I was exercising too hard. By Saturday, the 13th, my legs collapsed and my husband got me to the ER. I never had the striking pain so many of you talk about when myelitis first hits.During the 1st week in the hospital I was a Code Blue because the catheter gave me an infection and it went systemic. After that my body just kind of fell apart.I developed a bleeder in the colon and they almost didn't find it soon enough. After colon surgery I was kept in a sleep state for 3 days. My family had no idea if I would survive. Every 3rd day after that something else happened to my body. My doctors would not leave town. I spent 9 weeks in the hospital, part in rehab, and needed 19 ppints of blood. I have a colostomy and still have some trouble with my bladder. I self cath twice a day. But, if you would see me today sitting down, you would think I was the picture of health.I use a cane to walk and because of the feeling in my legs coming back with nerve pain, I have a stimulator implanted in my back. It helps cover the pain. I have a wonderful husband, my hero, and a loving daughter, son-in-law, and 4-year old grandson. We have many really good friends that have never left my side and we do many social things - love that!Well, that is my story. Hoping to get to know all of you. - Original Message - From: pjv1...@chartermi.net To: Janice jan...@centurytel.net Sent: Friday, March 06, 2009 7:23 PM Subject: Re: [TMIC] Hi Janice I just turned 59 a week ago. TM hit me 5.25 years ago when I was 53. My lesion was at C4 thru C6 level and it affected me from the chest down, however, you wouldn't know it looking at me when I'm sitting down. I use a cane to walk and have an ankle foot orthotic (AFO) that I seldom wear due to my burning feet. Most of my body has the searing/burning pain. My right side still shows some signs of the original paralysis and I type with one finger and thumb on each hand. I worked full-time as a bank manager until the Wednesday I went to work and tried to work thru various muscle spasms. I went home at 2:30, went to ER and that was the end of my career. There were times I truly thought I was loosing my mind and will never know if it was the medications I took or the stress of TM. TM gave me some bowel and bladder problems, but I only wear a heavy duty panty-liner now. So I'm doing well compared to some on the website. Some of us have shared some real personal info in order to help others understand TM. Don't be afraid to ask or share - it's the way we help each other. Patti - Michigan Janice jan...@centurytel.net wrote: I am anxious to get to know everybody and hear about their stories and how they are doing. - Original Message - From: pjv1...@chartermi.net To: Janice jan...@centurytel.net; transverse myelitis tmic-list@eskimo.com Sent: Wednesday, March 04, 2009 7:30 PM Subject: Re: [TMIC] You reached the TM internet club site. Welcome to a great bunch of people who are eager to help each other with questions and answers regarding Tranverse Myelitis. Patti - Michigan Janice jan...@centurytel.net wrote: This is a test for correctness of address.Please reply.
[TMIC] My TM Story
Hello Again Janice: I live in S.E. Wisconsin in a small town east of Madison, WI. I am 70 yrs old, one of the senior citizens and was 69 when I got sick. My story started last June. Believe it or not, but I got sick on our wedding anniversary. We were to celebrate our 45th. The day before, on a Saturday, I noticed when I got up that morning that my balance was very unsteady. I was babysitting for my 2 beautiful granddaughters and didn't think much about it. After their Dad picked them up, I thought I was coming down with UTI, so I went to our local Urgent Care Clinic. They said I did indeed have a UTI and gave me a script. I mentioned to them about my balance problem and the fact that my legs felt as though they were full, not exactly painful. They didn't make anything about it. I took the meds that day, and the next morning, Sunday, I felt so much better. We were going out to dinner with friends to celebrate our anniversary. Had breakfast, and went into the shower. I noticed when I was lifting my leg to get into the tub, I had to help my right leg as I couldn't lift it. After my shower, as I was getting dressed my legs just gave out and I landed on the floor. My husband was out cutting the grass and I knew he wouldn't hear me call. I was able to crawl to my cell phone. My youngest daughter and her family live just down the street so I called my daughter Lisa. She came over right away. I told her to call 9-1-1 and was more concerned that I was not completely dressed. She helped me get on a nightgown so I was at least covered. The EMT's arrived in minutes and was transported to our local hospital. They diagnosed TM right away after a spinal tap and MRI. They put be on steroids immediately and admitted me. I was not able to move my legs at all. In fact, if they fell off the bed I had to call a nurse to come and pick them up. Of course, like most of us, I have complete incontinence. After 6 days, they transferred to a larger hospital that had complete Physical Therapy. They worked me pretty hard for the next 4 weeks. I was able to walk with a walker when I left the hospital. I do not have complete feeling in my feet so I cannot balance properly so I can't stand alone. I experience burning in my legs and feet. The burning feels as though my feet are in ice water so they always bother me. I am lucky that I don't have the constant pain or muscle spasms. At this point, I don't know how much more I will improve. I take it one day at a time. I have been able to go back to work part-time (just 2 afternoons a week) with my walker. I am a pretty tired puppy when I get home, but it feels good to be out with people. Plus I get a lot of exercise which is good too. I do get depressed at times. In the beginning, I spent a lot of time crying in the shower so no one could hear me. I am sure that is natural for all of us. I know I am lucky to have a husband that is so good about all the new responsibilities he has. Also, my 2 daughters are so helpful. As I said my youngest lives just down the street, and my oldest lives about 30 minutes away. Her job requires her to do a lot of international travel, so she does what she can which is appreciated. I hope with the new stem cell policy we will find some type of a cure for all of us suffering from nerve and spinal cord problems. I think the part that I hate the most is the bladder and bowel problems we all have. I don't have to self cath, but do have to wear absorbent pads all the time. I guess this is enough about me. I hope we hear more stories from the rest of us. Take care all. Patti in Wisconsin
[TMIC] My TM experience
Hi, my name is Deb. I am glad some of you are giving the history of your experience with TM. I am fairly new to it and I am still trying to deal with it and figure things out. I have been part of this group since about August 2008 but have not participated much. I am still hopeful of making a good recovery and I sensed that this group is mostly, if not all, comprised of people who have not recovered fully. When first joining I had asked the question, does anyone know what the stages of recovery are and no one answered. My episode started June 2008, five days after my 52nd birthday. I woke up one morning and noticed my feet were numb. I tried wiggling my toes but nothing happened, I jumped out of bed thinking my feet would be blue from lack of circulation. To my surprise, they looked fine. I walked around and nothing changed, so I went to work with numb feet. In the next five days, the numbness progressed up to my waist. I could still walk but I started using a cane. Within the 1st two weeks (can't remember exact times anymore) I woke up in the middle of the night with an excruciating pain on my side. I couldn't even move. My husband (my hero) called 911; I thought maybe my appendix burst. The emergency room ignored the fact that I was numb and had to walk with a cane, they were just focusing on the pain in my side. They found nothing, next day I went to my primary care doctor; they took one look at me and called a Neurologist, who saw me that day. The Neurologist took one look at me and told me I had TM and I would be having a lifestyle change (boy, I had no idea what he was really referring to). He said the pain in the side was a referred pain from the TM (it happened again the next weekend, off to the hospital for morphine). I went on IV steroids for three days, then oral ones for seven days. Three days after the end of the steroids I couldn't walk (left leg went limp), bladder shut down as did bowels. Went to hospital for 5 days of IV steroids, then off to Rehab for 2 ½ weeks. Then home to deal with my new lifestyle. It took me about a month to accept that my life was really changing and this was not something that would be better in a month or two. I had the support and help of my 75 year old mother (she moved in with us for two months) and my husband. At this time I was using a walker and trying to learn how to walk again and get balance back. I feel I am still making progress, although very slowly. I now walk with a cane, drive with hand controls and work full time which is tiring and hard to concentrate with the baclofen, neurontin, cymbalta and klonopen. I still have questions and am trying to learn how my body now reacts to things. I was always active and still do not really understand how you judge what 'overdoing' it is. One of the emails explained that paying for it means that the burning gets really bad. I do have bad days with the burning, stinging and spasticity but I didn't think I overdid anything; this is where I fall short of knowing my new limits. Also, is it possible to build up stamina or will that never happen? Any input on these questions would be appreciated. Deb Long Island, NY
RE: [TMIC] My TM experience
Hello Deb, Thank you for sharing your story. From everything I have been told and read, there is never a full recovery. I am estimating that I am at about 90% of what I was. But then my TM is not as severe as most. Over doing it is all based on each person and their own limits. Just as every healthy person has limits as to how much they can do, so do we. Our limits are now lower than they were before. When I over do it, my body tells me by giving me more tingles than normal and being exhausted which comes on quicker than it did before. That is what I have found. I am sure everyone with TM has their own things to tell you about limits and recover as we are all different. Margaret -Original Message- From: Deb Monteleone [mailto:aiki...@optonline.net] Sent: March-08-09 6:33 PM To: tmic-list@eskimo.com Subject: [TMIC] My TM experience Hi, my name is Deb. I am glad some of you are giving the history of your experience with TM. I am fairly new to it and I am still trying to deal with it and figure things out. I have been part of this group since about August 2008 but have not participated much. I am still hopeful of making a good recovery and I sensed that this group is mostly, if not all, comprised of people who have not recovered fully. When first joining I had asked the question, does anyone know what the stages of recovery are and no one answered. My episode started June 2008, five days after my 52nd birthday. I woke up one morning and noticed my feet were numb. I tried wiggling my toes but nothing happened, I jumped out of bed thinking my feet would be blue from lack of circulation. To my surprise, they looked fine. I walked around and nothing changed, so I went to work with numb feet. In the next five days, the numbness progressed up to my waist. I could still walk but I started using a cane. Within the 1st two weeks (can't remember exact times anymore) I woke up in the middle of the night with an excruciating pain on my side. I couldn't even move. My husband (my hero) called 911; I thought maybe my appendix burst. The emergency room ignored the fact that I was numb and had to walk with a cane, they were just focusing on the pain in my side. They found nothing, next day I went to my primary care doctor; they took one look at me and called a Neurologist, who saw me that day. The Neurologist took one look at me and told me I had TM and I would be having a lifestyle change (boy, I had no idea what he was really referring to). He said the pain in the side was a referred pain from the TM (it happened again the next weekend, off to the hospital for morphine). I went on IV steroids for three days, then oral ones for seven days. Three days after the end of the steroids I couldn't walk (left leg went limp), bladder shut down as did bowels. Went to hospital for 5 days of IV steroids, then off to Rehab for 2 ½ weeks. Then home to deal with my new lifestyle. It took me about a month to accept that my life was really changing and this was not something that would be better in a month or two. I had the support and help of my 75 year old mother (she moved in with us for two months) and my husband. At this time I was using a walker and trying to learn how to walk again and get balance back. I feel I am still making progress, although very slowly. I now walk with a cane, drive with hand controls and work full time which is tiring and hard to concentrate with the baclofen, neurontin, cymbalta and klonopen. I still have questions and am trying to learn how my body now reacts to things. I was always active and still do not really understand how you judge what 'overdoing' it is. One of the emails explained that paying for it means that the burning gets really bad. I do have bad days with the burning, stinging and spasticity but I didn't think I overdid anything; this is where I fall short of knowing my new limits. Also, is it possible to build up stamina or will that never happen? Any input on these questions would be appreciated. Deb Long Island, NY
Re: [TMIC] Re: Prayers for You
Hi Jeanne, I'm so sorry to hear about these symptoms you're having. I just got home tonight after being gone 4 days, so I am a bit behind. I hope you have continued to rest and that has done the trick. If not, please do not hesitate to call your doctor! And Yes, I do remember the nightmare of the onset of TM. Please don't let that experience keep you from seeking help now. Prayers have been sent on up. Love to you,Linda - Original Message - From: jrushtonmailto:jrush...@columbiaenergyllc.com To: Patricia Cooleymailto:patticoo...@wi.rr.com ; tmicmailto:tmic-list@eskimo.com Sent: Friday, March 06, 2009 2:26 PM Subject: [TMIC] Re: Prayers for You Thank you all so much for the prayers and you know how I feel about them!!! I woke again this AM with the same symptoms , too stubborn to even call my provider (if any of you about read my nightmare on the day I got TM??) so I rested for a couple hours and the pain has eased some so I'm hoping it was because I just walked too much. Oh, I do so believe in the prayers and miracles.. Love to you all..Jeanne ---Original Message--- From: Patricia Cooleymailto:patticoo...@wi.rr.com Date: 3/6/2009 11:54:31 AM To: 'jrushton'mailto:jrush...@columbiaenergyllc.com Subject: Prayers for You Jeanne: I just read your message about your return of symptoms. Please be sure we are all praying for you. Try to keep the faith. I hope your symptoms subside soon and you are back to where you were and even better. I have you in my prayer basket. Please keep us informed on your condition. God Bless! Patti - Wisconsin SuperStock_1196-107.jpg
Re: [TMIC] My TM experience
Hi Deb! This is Janice from Missouri I have had TM for 2 years and am still trying to be able to tell just before over doing it, that I have over done it! With me, there is more nerve pain and I fall easily. Very irritating! It just takes time to learn your new body. I don't know if there are any actual stages to recovery. We are all too different and the intensity of what hit us varies too much. I have been told by doctors that the disease is usually divided into thirds - Bottom third is no improvement - Middle third is moderate improvement and some independence - Top third is almost complete or complete recovery. I have also been told that 3-5 people out of a million will contract this disease - pretty rare. Most recovery takes place the first 2 years with some after that. Must be something special about us. This sure is a great group to talk to and so open and helpful. I know that I want to be a part of this group - I have already been helped and feel I can ask anything. When I was first hospitalized with this, I assumed that it would be short term and that as soon as I recovered from all the other breakdowns my body had, I would be fine. I had no idea and the doctors never told me that this was my new life. I am still showing some improvements, but I can tell I will never quite reach the top third. You guys will be hearing from me for a long time! - Original Message - From: Deb Monteleone aiki...@optonline.net To: tmic-list@eskimo.com Sent: Sunday, March 08, 2009 7:33 PM Subject: [TMIC] My TM experience Hi, my name is Deb. I am glad some of you are giving the history of your experience with TM. I am fairly new to it and I am still trying to deal with it and figure things out. I have been part of this group since about August 2008 but have not participated much. I am still hopeful of making a good recovery and I sensed that this group is mostly, if not all, comprised of people who have not recovered fully. When first joining I had asked the question, does anyone know what the stages of recovery are and no one answered. My episode started June 2008, five days after my 52nd birthday. I woke up one morning and noticed my feet were numb. I tried wiggling my toes but nothing happened, I jumped out of bed thinking my feet would be blue from lack of circulation. To my surprise, they looked fine. I walked around and nothing changed, so I went to work with numb feet. In the next five days, the numbness progressed up to my waist. I could still walk but I started using a cane. Within the 1st two weeks (can't remember exact times anymore) I woke up in the middle of the night with an excruciating pain on my side. I couldn't even move. My husband (my hero) called 911; I thought maybe my appendix burst. The emergency room ignored the fact that I was numb and had to walk with a cane, they were just focusing on the pain in my side. They found nothing, next day I went to my primary care doctor; they took one look at me and called a Neurologist, who saw me that day. The Neurologist took one look at me and told me I had TM and I would be having a lifestyle change (boy, I had no idea what he was really referring to). He said the pain in the side was a referred pain from the TM (it happened again the next weekend, off to the hospital for morphine). I went on IV steroids for three days, then oral ones for seven days. Three days after the end of the steroids I couldn't walk (left leg went limp), bladder shut down as did bowels. Went to hospital for 5 days of IV steroids, then off to Rehab for 2 ½ weeks. Then home to deal with my new lifestyle. It took me about a month to accept that my life was really changing and this was not something that would be better in a month or two. I had the support and help of my 75 year old mother (she moved in with us for two months) and my husband. At this time I was using a walker and trying to learn how to walk again and get balance back. I feel I am still making progress, although very slowly. I now walk with a cane, drive with hand controls and work full time which is tiring and hard to concentrate with the baclofen, neurontin, cymbalta and klonopen. I still have questions and am trying to learn how my body now reacts to things. I was always active and still do not really understand how you judge what 'overdoing' it is. One of the emails explained that paying for it means that the burning gets really bad. I do have bad days with the burning, stinging and spasticity but I didn't think I overdid anything; this is where I fall short of knowing my new limits. Also, is it possible to build up stamina or will that never happen? Any input on these questions would be appreciated. Deb Long Island, NY
[TMIC] hello to all
Hello All, It seems that I've been bumped off list for a while. I know that this happens now and then, and it seemed like the list was very quiet again, so I decided to take a look at the archives. Well, to my surprise there was a lot of activity that I missed. I'd like to say WELCOME to our new family members - I hope that you feel the love that is on this site. You will soon know that we talk to each other about EVERYTHING here, even things that most of us don't even tell our own close friends or family members. They really wouldn't understand, although many try, they just don't since it isn't something that they are going through personally. Most of us lurked in the background for a bit before we introduced ourselves to the group. There are times when it is really busy and then it quiets down for a while. Like all other families we don't always agree, but we are very quick to come to the aid of each other, and share all that we have experienced with TM. To all others, please know that you are all in my thoughts daily. I don't send many messages, but think of you all each day and hope that those who are having difficulty are doing better. Has Jude had her surgery? I haven't seen anything about her, and think it would have been listed if she had it. Looks like my you are now subscribed message has arrived, so I'm alive on the TMIC once again, YEAH!!! Hugs to all, Barbara A **A Good Credit Score is 700 or Above. See yours in just 2 easy steps! (http://pr.atwola.com/promoclk/100126575x1219957551x1201325337/aol?redir=http:%2F%2Fwww.freecreditreport.com%2Fpm%2Fdefault.aspx%3Fsc%3D668072%26hmpgID %3D62%26bcd%3DfebemailfooterNO62)
Re: [TMIC] hello to all
What a nice note, Barbara...thank you, Jeanne in Dayton ---Original Message--- From: balmat...@aol.com Date: 3/8/2009 11:15:09 PM To: tmic-list@eskimo.com Subject: [TMIC] hello to all Hello All, It seems that I've been bumped off list for a while. I know that this happens now and then, and it seemed like the list was very quiet again, so I decided to take a look at the archives. Well, to my surprise there was a lot of activity that I missed. I'd like to say WELCOME to our new family members - I hope that you feel the love that is on this site. You will soon know that we talk to each other about EVERYTHING here, even things that most of us don't even tell our own close friends or family members. They really wouldn't understand, although many try, they just don't since it isn't something that they are going through personally. Most of us lurked in the background for a bit before we introduced ourselves to the group. There are times when it is really busy and then it quiets down for a while. Like all other families we don't always agree, but we are very quick to come to the aid of each other, and share all that we have experienced with TM. To all others, please know that you are all in my thoughts daily. I don't send many messages, but think of you all each day and hope that those who are having difficulty are doing better. Has Jude had her surgery? I haven't seen anything about her, and think it would have been listed if she had it. Looks like my you are now subscribed message has arrived, so I'm alive on the TMIC once again, YEAH!!! Hugs to all, Barbara A A Good Credit Score is 700 or Above. See yours in just 2 easy steps! SuperStock_1196-107.jpg
