HNPP – The Latest

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 […]

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NCS VS EMG: What’s Needed for a CMT Diagnosis

Ask 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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Charcot-Marie-Tooth (CMT) Infographic!

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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CMT Awareness Month Quiz! New Questions – 2019

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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Has Country Music Television Jumped the Shark? What you need to know about CMT…..

  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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Pony Takes Stand to End CMT

OUR STORY – Yohan and I had so much fun trail riding when we were younger. Oh, the stories we could tell!! I’ll never forget the time I stepped in a bee’s nest and ran for my life with Yohan on my back! He held on to my mane and stayed on. Phew! Close call! […]

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Life Advice: Athos the Horse (Almost)

    My birthday is on March 9. My buddy, Yohan and I are turning 26 years old. Besides a stiff leg and a couple of pigeon fever bumps on my chest, I’m doing pretty well for an old guy. Yohan took really good care of me for a very long time. His CMT got in […]

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CMT: The Most Common Rare Disease You’ve Never Heard Of!

  “Liz baby, Liz baby, baby, baby, Liz baby!” he sung every time we crossed paths. Pete was my postman when I was in college at the University of Vermont. Tall, good-looking, great personality – Pete, a proud Jersey boy, knew everyone in town and everyone knew Pete. After years with the post office, he […]

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Guilt Giving: Let Me Count The Ways

I walked into the ice cream store, craving a scoop of malted milk ball deliciousness – in a waffle cone, of course. As the only bona fide paying customer in the shop, I expected quick and efficient service, but the middle-aged man freaking out about his lost credit card was getting all the attention. The […]

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How Do You Spell Progress in CMT Research? STAR!

On the 10th Year Anniversary of the launch of STAR (Strategy to Accelerate Research), CMTA Chairman, Gilles Bouchard, gives a webinar explaining the current status and remarkable advances made in CMT research. This webinar was so informative and well-done, I transcribed it for you. Spread the word folks. Pretty amazing work being done right now. […]

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Public Loo Etiquette: Based on True Stories

  Have you ever wondered why public bathrooms are called restrooms? There is no rest to be had in any public restroom, just stress, fear, and anxiety. Listen, if I want to rest, I’ll just stay home and lie on the couch or go to bed.  Why in the world would anyone want to rest […]

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