Symptoms - Feet - Cold and numb feet
Q: My feet are very numb but still feel the cold. I don't understand this; my feet are so numb you can stick pins in them and I don't feel it so why do my feet feel cold?
Dr. Parry answers: The numbness we speak of in CMT and other neuropathies is loss of sensation mediated through nerve fibers in the skin and is only one part of the ability to perceive the temperature of the environment and to be able to react to it by reducing blood flow to the extremities (causing the feet and hands to go white), shivering, having the skin hairs stand up and forming goose bumps etc. The temperature receptors in the skin certainly form one part of that reaction but other factors, unrelated to these skin nerve endings, also play important roles.

Symptoms - Feet - Red and purple feet and swelling
Q - from Angie Deets in Texas: I have been in hospital twice with my feet and ankles swelling really bad. they get red and purple then I start having sharp, shooting pains in addition to the normal foot pain I have learned to live with.
Tests say everything is okay but when they put me on intravenous antibiotics they clear up. Then it happens again. What's going on?
A - Dr. Gareth Parry: The blood vessels have a nerve supply just like everything else. We call these vasomotor nerves and their main function is to control the calibre of the vessels and therefore the way blood flows to the limbs. As these nerves degenerate in CMT it is very common for the legs to become red or purple because of the diminished control of the blood vessels in the skin. Swelling intends to occur later. It is almost invariable that these features will develop eventually and occasionally they develop early.

Symptoms - Head & neck night sweats
Q: I tend to sweat a lot around the neck and head especially at night. These sweats do not seem to correspond with any disease process other than CMT. Can you shed any light on this?
Dr. Parry answers: CMT does affect, to some extent, the nerves that control sweating. As the disease progresses, there is reduced ability to disperse body heat through sweating in the distal parts of the limbs (hands and feet). The commonest thing people then notice is that they sweat more on their bodies and head since it is the only place left where they can sweat. This is a common complaint but one that is hard to treat. Usually people learn to live with it but it can be embarrassing in social situations.

Symptoms - Muscle weakness
Q: Is there any muscle in our bodies which cannot be affected by CMT? I ask this because my gluteals (buttocks) are weak even after regular exercise and I must get off the floor now with my rear in the air. (I think that it's called Gower's Sign.) I have had such trouble since my teens, but of course, it has progressed since then. A physical education teacher with whom I am acquainted thought that probably any muscle might be affected. My CMT sister has no trouble with her gluteals, and of course, I realize that members in the same family can exhibit different symptoms.
Dr. Lowell Williams answers: Any of the muscles of the body can be affected by CMT. The long action (motor) and feeling (sensory) nerves of arms and legs are most often impaired, but the sympathetic nerves that control intestines and other body functions also may have poor function. What is still not explained by the "gene defect" of CMT is the difference you describe between your weak gluteal muscles, causing you to rise as you describe, and those of your sister. CMT does have different "expression" in members of the same family, but we don't know why.

Symptoms - Osteoporosis and CMT
Question: The doctor says I have osteoporosis. Is it common among people with CMT? Does it have anything to do with the fact that some of us can't move or walk much? Does muscle atrophy play a part in it?
Answer from Dr. Gareth Parry - Yes! On all three accounts. You should take calcium supplements, and vit D and be on hormone replacement therapy if you are post menopausal. You should maintain some weight bearing exercise and quit smoking if you are a smoker. Additional medications, including fosamax, may help your bones take up calcium as you age. Also note that men can also get osteoporosis, particularly men with CMT and other neuromuscular disorders.

Symptoms - Pain
Question: My main worry is my back, which my GP says is arthritis, and the fact that it hurts to sit on my behind. Have you ever come across any other person with CMT who has this problem? Is there anything you can tell me that might cause this?
Dr. Lowell Williams answers: Arthritis can occur in CMT especially when muscles holding the bones in proper alignment are weak. This puts stress on the joints of the knee, hip and back which allows arthritis to develop. Preventing this type of arthritis is the real goal of corrective surgery in CMT; this means bearing your weight properly on your joints! Sitting can be painful if you have arthritis in your hip joints or if you have lost your gluteal muscles and are sitting directly on the bones. Try sitting on a hollowed cushion.

Question: We would like to know a little more about chest pain and CMT. My husband has had chest pains for years. Each time he has an ECG, it comes out fine, no heart problems. Our doctor just shrugs his shoulders when we mention CMT. Do you have any comments on either of these?
Answer: See the answer to question 3. Chest pain can result from weakened chest muscles and also from retention of small amounts of fluid in the lung from shallow breathing. It is important for CMT people to breathe deeply for several breaths at least once a day (be sure you are sitting down; it may make you dizzy since you aren't used to so much oxygen!

Symptoms - plateau or stopping of
Q: For the last year, I seemed to have arrived at a state where my CMT had stopped. I use the word "stopped" loosely, and now have found it with me again. What I would like to know is which kind of arthritis goes hand in glove with CMT. Is it possible for me to have had a remission? I do not think the medics over here think so.
Dr. Lowell Williams answers: CMT does seem to go into remission for most people, usually during the period after adolescence and before aging changes that develop after 55. One study showed that CMT slows after the first five years from onset. We need more studies to understand this process.

Symptoms - Vision difficulties
Q: I would like to know what vision difficulties individuals with CMT experience. I have experienced double vision when tired the last few years. More recently I have had difficulty with one eye, either left or right, not focusing. I will have perfect vision in one eye but the other one will be blurry and out of focus. Sometimes this will last up to four or five hours.
Dr. Lowell Williams answers: Weak eye muscles causing the blurred vision you describe may be due to a demyelination (myelin loss) of the cranial nerves that control these muscles. If this is the case, CMT can cause this type of vision problem. Although feet and hands are the major sites of nerves involved with CMT, the nerves of the neck and head may also be affected causing a weak swallowing reflex and a weak high-pitched voice. The retina (seeing tissue in the back of the eye) is affected also in one form of CMT with retinitis pigmentosa (Type VII as described by Dr. Peter Dyck in 1974.)