Volume 5 Issue 2
Page 41
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IL Support Group
I developed Transverse Myelitis at the age of two and was not diagnosed until some months after the onset of symptoms. Until the year 2000, I had not met another person with TM. Although I was 21, I still had outpatient physical therapy at Children's Memorial Hospital in Chicago. A physical therapist who was working with Rachel Dorocak, a young Ohio TM patient, referred her mother, Cathy, to me, because she wanted to meet someone who grew up with TM. Through Cathy and Rachel, I found The Transverse Myelitis Association. I had two additional episodes of TM, at 10 years and at 18 years of age. All of my episodes have been completely different. The first episode was shortly after receiving immunizations and shortly after having a cold and stomach flu. I went from a normal, active toddler to being able to walk less than three steps. The second episode started with weakness until I could not move from the neck down. The third episode affected the right side of my body more than the left and again I was unable to walk. After lengthy rehab, I was able to walk short distances. Several spinal fusions after I was 18 have further complicated the walking issues. Having Juvenile Rheumatoid Arthritis and Lupus also adds additional issues. After graduating from high school, I started college, but that has been on hold due to health issues. Continuing my education is one of my goals. After the initial meeting with Cathy and Rachel Dorocak, I attended the 2001 Baltimore Symposium and the 2002 Children's and Family Workshop. Attending these TMA sessions reinforced the feeling of isolation I experienced in Chicago and the need for a local support group. Tina and I bonded instantly and are looking forward to meeting with other people from the area. One of my priorities is to find a neurologist in the Chicago area who will specialize in the treatment of TM and become a link in the network of regional centers of excellence for Transverse Myelitis. Another priority is fundraising to support research. Two local families, the Hamilton's and the Callahan's, who have young children with TM, have had successful fundraisers. As a group we could offer support to any fundraising projects in place and hopefully initiate fundraisers. The IL support group has already held several meetings. If you are interested in becoming involved, please call either Tina or myself, and check out the IL page under Support Groups on the TMA web site. We regularly post information about our activities and future meetings. I would also like to thank Jeanne Hamilton who has taken a leadership role in the IL support group. Jeanne's young son, Kevin, developed TM as an infant. Nickie Garrigan My name is Tina Deberge. It was August 7th, 1998 when TM came into my life. A newlywed of six weeks, I was enjoying a family visit when I suddenly felt a lightning bolt-type pain shoot across my neck. The pain was sudden and intense, and by the time my hand reached my neck, the pain vanished. What followed was total numbness in the bottoms of both of my feet. I saw my doctor two days later and was told that I was very sick, that I either had Syphilis, HIV, MS, or a brain or spinal cord tumor. More remarkable than the "diagnosis" was the fact that she sent me home. I drove myself around the first few days while my symptoms progressed! It took another day before I received a normal MRI of the brain, and several days more before an MRI of my spinal cord showed inflammation at C2. I continued to lay in my apartment for another three to four days before seeing a neurologist who performed a spinal tap and blood work. Soon after, MS was ruled out, so I was told I was diagnosed with TM. It was explained to me that it was not an illness, but a condition with several symptoms that mirrored MS. Basically, I was told I had TM because MS could not be proven at that time. I was assured that I would be diagnosed with MS within the next few years. By this time I had no feeling from the waist down, and felt like a tight band stretched around my entire torso as if I was encased in cement. My arms and hands were becoming numb, and my fingers were curling up into my hands. I could no longer write legibly or hold anything without fear of dropping it. My breathing was shallow, and I felt like I might be suffocating. It's funny to me now that my husband and I never thought to go to the hospital! Finally 10-12 days after the initial onset, the neurologist prescribed prednisone. Day by day, I became better until I made nearly a full recovery. Today, I still have vibrating, tingling, and numbness sensations throughout most of my body. I also have chronic back pain due to having little physical therapy to regain muscle strength while recovering. I also feel like the luckiest person in the world to have overcome such an event! The worst part of TM for me was that I felt very alone and not receiving good care. It didn't seem like anyone knew what to do with me, and I was too sick to try and find out for myself. I have never felt so alone, and I hope that no one else ever has to go through this! The best part of TM is that I have learned a lot more about myself, my limitations, my strengths, and I know that I have something positive to offer others. I also get to say I am one in a million and mean it! I really hope the Illinois support group can be a place where people can turn for support and friendship. We need to get the word out to the medical community, so people with TM receive the best medical care possible. I hope to raise money to help fund research. Please come and join us! I look forward to meeting you!
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