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
