True Stories about Living with Charcot-Marie-Tooth (CMT) And Other Relevant, but Unrelated Tales
HEREDITARY NEUROPATHY WITH LIABILITY TO PRESSURE PALSIES Jun Li, MD, PhD Professor and Chairman of Neurology Wayne State University School of Medicine Detroit Michigan Nerve tissues that reside in the skull and spinal canal make up the Central Nervous System (CNS). The CNS extends numerous nerve fibers out of the space of the skull and […]
Read MoreAsk an Expert I’m confused about the difference between electromyograms (EMG) and nerve conduction studies (NCS)—can you please explain? Dr. Richard A. Lewis* answers: EMG, which stands for electromyogram (“myo”= muscle), is the term used for electrodiagnostic tests (EDX) for neuromuscular disorders. The total EDX includes both nerve conduction studies (NCS) and needle EMG. Depending […]
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Vicki Pollyea – October 27, 1956 – September 15, 2019 When I first met Vicki over 12 years ago, she was the leader for the Tampa CMTA/MDA branch, the largest CMT group in the country. We hit it off immediately, and I knew she’d be a forever friend, and I was right. Over the years, […]
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This is a transcript of the CMTA’s recent STAR gene therapy webinar. CMTA Board Chairman Gilles Bouchard begins by giving an overview of CMTA’s research initiative – STAR (Strategy to Accelerate Research), followed by an in-depth review of our gene therapy program by Drs. John Svaren and Kleopas Kleopa, members of our Scientific Advisory Board. […]
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Tremors are fairly common in people with CMT, and can intensify when the person is nervous, cold or tired. CMT expert neurologist, Dr Richard Lewis writes, “Clinically, when someone has CMT and a tremor, they sometimes call this Roussy-Levy Syndrome. Tremors are thought to occur because of decreased sensory input to the brain about where […]
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Question: I have CMT and had foot reconstruction surgery last month. While in the cast and recovering I have been even more aware than ever of the muscle deficit in my other leg. That leg has had several knee surgeries through the past 20 years. Each time I had knee surgery, my quadriceps muscles have […]
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I have an ulcer on my foot that will not heal. Is this typical of CMT? Dr. Joseph Gregory Stilwell, DPM writes: Yes,ulcers can be quite common with CMT. Oftentimes because a bone is prominent, and taking excess pressure- irritation occurs. Then, with decreased sensation and other changes in the skin along with possible diminished […]
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Thanks to everyone who gave to my Facebook Birthday Wish!! ! So far, I’ve raised $1,900 for the CMTA and that money will be doubled!!! If you have not yet donated and would like to donate ANY amount large or small, here is the link: https://www.facebook.com/donate/2563852316996537/2560906437338818/ And, if you are not on Facebook, you can […]
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It’s really hard to describe what CMT is to people. After about 2 minutes of trying to explain peripheral nerves, neuromuscular disease, genetic patterns and why your talking about a Tooth, eyes glaze over, yawns escape and the subject changes to other topics like….the weather. Maybe a picture explains the effects of having CMT better […]
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1) Charcot-Marie-Tooth Disease (CMT) is also known as: a. Inflammatory Nerve and Muscle Syndrome b. Hereditary Motor and Sensory Neuropathy c. Funky Foot Disorder d. Chronic Tendinopathy with fatigue 2) How many different inheritance patterns does CMT have? a. 1 b. 2 c. 3 d. Too many to count. 3) Can CMT skip generations? a.Yes […]
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There is always country music tunes playing in the background at my mom’s house in Vermont. This particular rainy summer day, we spent the afternoon dancing barefoot to Johnny Cash melodies playing on the TV in the living room. Resting our tootsies for a brief moment, my mom casually asked, “Why’s Yohan always on […]
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In 2001, François Côté, an avid and life-long athlete had a serious snowmobile accident which changed the course of his existence. Breaking both of his legs and knees, he suffered permanent damage in the form of left-sided “foot drop” or the inability to lift the front part of […]
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