Re: [TMIC] My TM experience
Welcome to all of the newbies and thank you for posting your TM experiences. I was gone for 4 days (then add another day to recuperate!) and I am trying to plow through 278 emails. I am going to read each of your posts again and reply individually. Please forgive me - I'm not usually this slow. I'm really looking forward to getting to know each one of you. Linda in Eagle, ID - Original Message - From: Janicemailto:jan...@centurytel.net To: Deb Monteleonemailto:aiki...@optonline.net ; tmic-list@eskimo.commailto:tmic-list@eskimo.com Sent: Sunday, March 08, 2009 9:39 PM Subject: 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.netmailto:aiki...@optonline.net To: tmic-list@eskimo.commailto: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
Re: [TMIC] My TM experience
Hi Deb, Welcome to the group, although, it sounds like we all had a mental melt-down when you first approached us. I'm glad you tried again. We need fresh faces, ideas, reminders and medical news. Sometimes it is the newcomers who give us oldies the push we need. I am always impressed with those of you who go back to work. I always ask myself, How do they do it? Wow! One of the ways my family knows that I'm over doing it is that I start bumping into doorways, chairs, tables and grabbing onto their arms as I walk by insisting I'm o.k.. Those are the evenings I sit on the sofa in burning pain and wish I could just pull my leg and thigh out of the socket like seperating a whole chicken. Then I fear the phantom-pain would be just as bad. Yes, the stamina got better for me. I used to take naps every day and fall asleep watching TV every evening. I can make it through a day and maybe a week without napping. It used to take three or four days to recover from a day away from the house. Now I recover from everything overnight. I can push myself knowing that I'll get over it. Yourstamina should increase over time. I have a new answers to old friends who seem to insist that I wallow in some kind of self-pity. When they ask if I miss working, or, How are you REALLY doing? I tell them I'm enjoying my life or I have a good life and I'm enjoying it. You're right TM changes things - everything. Someone on the list once said, TM is not who I am. and I quoated that to myself often in the first two years. Again, welcome to you and the others who have joined in the past months. I wish we could have a new-comers pot-luck as our church does. Patti - Michigan (TM since Nov 2003. C4-C-6, walking wounded.) Deb Monteleone aiki...@optonline.net wrote: 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
Re: [TMIC] My TM experience
Deb, Sorry we have to meet this way, but this is the right place to be!! I'll answer 2 questions..1st concerning stages of recovery, you got no answers because each of us has our own recovery storylike no 2 snowflakes are alike! 2nd..concerning overdoing, if you do too much one day, the next day is wasted!! My pt told me when he came to my house to teach me to walk again, go only as far as you can and still get back!! My first walk with my hubby, I went as far as I could go and only because he could grab a lawn chair was I able to rest to get back.that's overdoingit took me some time to realize what my limitations were and to this day, I overdo from time to timemy brain tells me I can do more than my body will!! Thus, this tm is a constant learning curve...most importantly, lose the phrase I can't from your vocabulary and just keep on trying!! and never put a timeline on what you can accomplish!! In thirteen years, I've gone from paralysed at t8 (breast level), complete, to a walking wounded who still forgets she can't do something until it's too late!! janh, Stillwater, OK --- On Sun, 3/8/09, Deb Monteleone aiki...@optonline.net wrote: 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] 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
