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: Janice<mailto:[email protected]> To: Deb Monteleone<mailto:[email protected]> ; [email protected]<mailto:[email protected]> 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" <[email protected]<mailto:[email protected]>> To: <[email protected]<mailto:[email protected]>> 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 > >
