Hi Kelley, I was hit with TM in 2005 and went through paralysis from the right leg down, horrific pain in gluts and around waist and had coordination issues. Less than a year later, just as the neuro predicted, I had bladder problems which put me in the hospital. That was no laughing matter.
I too was treated as if it were early MS, even though it was not. I was but on beta but not copaxion. There was brief discussion of that possibility in the future but that never materialized. I am GLAD that the doc treated me so seriously because NOW I AM WALKING!!!! Walking is a BIG BIG DEAL! LISTEN to the doctor, don't listen to common folks. You can go for second opinions if you like. "A bird in hand is better than two in flight," so the saying goes. I battled with this condition for years!!! My neuro did NOT recommend PT but I went for a second opinion, which was hard to find someone to give me one, and it was actually hard for me to find someone who was willing to send me to a good PT. Before the PT, I could NOT cross my legs. Actually, I could barely drag my foot over the other. The PT was one of the BEST events. I learned how to stretch my leg and other muscles on my own. Eventually, I was able to walk a tread mill without falling off (sideways lol). One good summer on the tread mill for about 2 hours a day got me to where I could jog again but not run. That was in 2007. Another doc, that I went to for a second opinion, gave me bachlofen (sp.) and it made a HUGE different in pain management, sleep, and recovery. Another doc put me on neurotin (gabepiten) and tegretal and both made the pain go away so I could at least sleep!! and have a life. Now, I am pain free, can RUN, and only occasionally have pain and tightness in specific spots in my right leg, right glut and lower back - usually about 5 am or so. I was persistent because I did NOT want to continue life that way. I chose to mentally reject the notion that I would never walk again although THREE different doctors from two facilities told me that the best shot I had was to save my left leg and my bladder before it was too late. Now, I don't believe that one can simply "not believe" something and that changes things. I do have faith, believe in prayer, believe that faith makes a difference, and also believe that our mind can impact our bodies. However, that doesn't just simply mean we can "wish" something away. i know this isn't a philosophy or religious site; however, many of us have experienced miracles and my not so religious neuro said that I was a "walking miracle." Interestingly, aside from the TM, I had non TM related neurological issues. My fatigue level was through the roof, or rather, in the basement. For quite some time, I was not able to get myself up in the morning and within 15 minutes my energy level would crash. I felt like I was in constant jet lag. I also had memory problems, esp with names. Concentration was a huge issue and I grew heavily depressed. THEN the walking suddenly came to a stop and along came the TM related pain and funny feelings. During that time, I really felt ostracized by most of the doctors that I went to; however, I was relentless and determined to get a treament that worked for me. The doctors were a pain in the butt - I don't know if doctors realize just how they come across to us sometimes. Seeing different people allowed different ideas and perspectives and a piece of the puzzle to come together with each new practitioner. Hope this helps. ________________________________ From: Kelly Jean Craig <[email protected]> To: [email protected] Sent: Thu, August 19, 2010 1:37:29 PM Subject: [TMIC] MS drugs for TM Hi Everyone, I was Dx with TM in May and have recovered quite well after being temporarily paralyzed. However, I still suffer from the sensory, coordination, bladder and sexual problems. I have just been prescribed gabapentin for my neuropathy. After meeting with four different neurologists, one is of the opinion that I should take MS therapies to prevent future relapses. Even though he says I do not have MS, he calls it a clinically isolated syndrome. Since my brain MRI is abnormal, he suggests that my risk of really having MS is extremely high. I just wanted to ask if your neurologists recommended taking interferon beta or copaxone therapies? The side effects are pretty horrendous and I am really concerned about quality of life, but at the same time, I don't want to have another episode and be paralyzed permanently. I would greatly appreciate any feedback on experiences, side effects, etc. Thanks, Kelly Jean
