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Symptoms of CMT
Symptoms of CMT vary greatly in each individual. That's why no
doctor can predict what you'll be like in 10 or 20 years and one that does should be
ignored. How your CMT manifests itself all depends on your genetic makeup, your lifestyle,
activities, stresses, diet and everything else that makes up your life. Since no two of us
are the same, everyone's CMT is different. I've seen people with such a light case of CMT
that they are still walking, climbing steps and working into their 70s. My mother is in
her early 80s and is still dealing in antiques. On the other hand, I am using a walker and
an electric scooter at 55 and have a grip strength in my hands of two pounds. What a
difference one generation can make. Many people who have CMT have it so lightly that they
are not aware of it until someone in the family comes up with a severe enough case that
they go for a diagnosis; then, as I mentioned before, everyone starts searching. It isn't
uncommon for us to hear from five or six branches of one family in a few months as they
search out information for the CMT that has been in their family for generations but they
just learned about because someone had a reunion and one of them had a child who showed
CMT early and was diagnosed.
Other symptoms include: headache and sleep problems; breathing problems because the phrenic nerve that helps the diaphragm muscles that let your lungs push out air and bring in air are affected (a small percentage of our members are on ventilators either at night only or 24 hours); hearing and eyesight problems; a weak neck (your head feels too heavy); whistling, chewing, and swallowing (choking) difficulties and vocal cord paralysis have been noted as well as digestion and elimination problems; shoulder and chest weakness; muscle spasms in chest wall, arms, thighs, any muscles that are tired or overworked can spasm. Other symptoms can be very cold or very hot hands and feet. Painful hands and symptoms not unlike carpal tunnel syndrome where there is a numbness and pain in the wrist and little fingers can also be part of CMT; in fact, you can have carpal tunnel and CMT or CMT that is diagnosed as carpal tunnel if the doctor doesn't look at the rest of you.
Pain from nerve deterioration and weak, tired, overworked muscles is common and we work with a lot of CMT people who are in pain. A feeling of nerve or muscle crawling called formication and burning, mainly on the soles of the feet and palms of the hands and sometimes the behind and back of thighs as well as tremors can also be part of CMT. Sciatic leg pain and foot pain are also common. We continue to print a page on a variety of aspects of pain and pain management in each newsletter and we are actively involved in pain research.
Some people with CMT experience bouts of unexplained diarrhea or constipation. Some are extremely sensitive to light and sound, hot or cold and many are sensitive to stimulants such as caffeine and react badly to alcohol and tobacco and are sensitive to normal adult doses of many drugs, instead taking a child's dosage after talking to their physician.
Extreme or prolonged stressors such as a drawn out divorce, moving many times, a job that is too heavy or difficult for you, several close deaths in the family, an accident or looking after children and an elderly parent have been known to make a person with CMT worse. It is extremely difficult to prove that stress can exacerbate CMT but anyone who has gone through an extreme stressor and come out the other side much worse can speak from experience.
Some people with CMT also experience problems with proprioception. That is the ability to tell where your body is in the space around it. Sometimes I can get into the car and not be able to tell if my foot is inside the car without looking at it. I can also feel as though I am all slouched over when in fact I am sitting up straight. This can be frightening to say the least but it isn't going to hurt you. In most cases you can just sit down, try to relax, and wait it out.
CMT can cause severe disability in some cases but, as I've said, most people have it so mildly they do not know they have it. The above symptoms have been seen overall in a great many people who have CMT but most people who have CMT only experience a few of them.
CMT does not affect life expectancy unless the phrenic nerves that help you breathe are badly involved. Also, some people who have CMT lose the ability to cough. Not being able to cough and weakened respiratory function can mean a person is more susceptible to life-threatening lung infections and disease.
With an early diagnosis and by taking care of yourself over the years, most people with CMT will live a normal life span without too much difficulty, although there is no denying the fact that some people do have severe problems.
It is said that the best form of dealing with CMT is to live well. Treat yourself well. Do not overdo anything and learn to pace yourself.
We are learning more all the time about alternate therapies and drugs to control pain. Surgery can help foot, ankle, hand, finger, spine and hip problems. Ankle-foot orthotics (AFOs) can also help a person with footdrop walk without tripping and in-shoe orthotics can help alleviate pain experienced when walking and give a person an improved gait. There are methods and devices available to help you cope with everything from swallowing problems to not being able to wipe yourself.Genetic research has already found the genes that cause some of the many types of CMT and is ongoing.
Testing for some types is available.
