Charcot Marie Tooth Disease (CMT)

My symptoms of CMT actually began back in 2002.  I began developing a consistent achiness in my legs and feet as well as general weakness.  I noticed that my feet were loosing muscle and that the bones in my feet would hurt after long walks or any type of consistent activity.  My doctors’ felt that it was just signs of aging and that it was normal.   They sent me to physical therapy, MRI’s of my back, they thought it could be a sciatic nerve issue and so on. Each year my symptoms got slightly worse and the pain in my legs increased a lot.  My arms and hands then began hurting in the same fashion and i began tripping more frequently.  Gradually, my legs and feet became weaker and I had lost most of the muscle mass in my feet and lower part of my legs.  In 2010, after insisting that this was not normal, my doctors ran a series of tests including an EMG and NCV test.  The results immediately indicated the nerve damage in my legs.  After getting two opinions from two different neurologists, they confirmed that I had CMT.  One of the key deciding factors was my high arched feet and hammer toes combined with the results of my tests and the progressive nature of my symptoms.  At the time, I didn’t realize how much my life was about to change.  I don’t walk long distances anymore, I’m not very active at all but I could still drive a car.

Many people have asked me how this project began and why. It really began in June 2010 when I was first diagnosed with Charcot Marie Tooth disease.  When I first heard about the disease I was completely numb to what lies ahead.   I knew nothing about this disease…. absolutely nothing.  The disease had a strange name, sounds like a dental condition but its not.  It’s actually named after the three French doctors who discovered this neurological disease back in the 1800’s.  It took some time for me to accept that this disease was serious.  CMT is a chronic, progressive, and unfortunately incurable neurological disorder that slowly deteriorates peripheral nerve function in your arms and legs.  CMT patients can slowly lose normal use of their extremities (hands/arms & feet/legs) as the nerves no longer stimulate the muscles.  Many patients have numbness, tingling and a burning pain in their arms and legs while others may just experience some loss of sensory nerve functions (fine motor skills) and/or develop “foot drop” and gait problems.  CMT currently affects over 2.6 million people.  According to the CDC, the prevalence of CMT is equal to that of Multiple Sclerosis (MS) and 10 times more prevalent than ALS. It was also unfortunate to realize that many people do not know about CMT even though it’s the 2nd most common neurological disorder in the country and the number #1 most commonly “inherited” neuropathy in the world.  Many sufferers of CMT are in constant pain caused by continuous nerve decay. Many wear foot and leg braces to support balance. Unfortunately, some patients may be bound to a wheel chair for life.  The symptoms vary widely from mild to severe.  Brain function and cognitive abilities are not affected as they are with MS and ALS.  Fortunately, CMT is not expected to reduce life expectancy but it makes living life significantly more difficult.  As my CMT has progressed, the disease has physically slowed me down.