• Does stress make CMT worse?

    Stress does not make the nerve damage worse and does not make CMT worse, but may make some symptoms like sleep, discomfort, pain, tingling and even balance worse.

  • What are neuromas and how do I treat them?

    Neuromas (or Mortons Neuromas) are a pinched nerve between two metatarsal bones in the ball of the foot. Most are between the 3rd and 4th toes, and are aggravated by excess pressure either from a tight shoe around the ball of the foot, or a metatarsal arch that is no longer responsive and flexible.

    Foot orthotics with a metatarsal raise can help. There are alcohol injections as well as herbal/homeopathic injections available as well as the cortisone injections.

    If injections do provide relief, but only for a short time, then surgery may be the next step. If no relief is obtained with the injection (even for a short time), then the diagnosis would be in question, and neuroma surgery may not be effective.

    There are two main classes of neuroma surgery, an excision of a portion of the nerve, and/or a decompression of the nerve in the area where it is being pinched. A chronic long standing neuroma may do better with an excision vs. the decompression. Neuritic pains are not uncommon in CMT. This is why one must strive to make an accurate diagnosis when a Neuroma and CMT coexist, to make sure you are treating the correct pathology!

    Sometimes it is helpful to get an opinion from both a foot and ankle orthopedic surgeon as well as a podiatrist, to help gain a more complete understanding of what is causing your nerve pain, and possible effective treatments besides cortisone injections. Please let us know your experiences so we can share with the rest of the CMT community.

  • Can swelling of the feet be caused by CMT?

    Normally, swelling of extremities or joints is not a direct result of CMT, unless there is trauma to a numb joint. An evaluation for arthritis or even a systemic cause of extremity swelling, such as heart failure, would be in order.

  • Why do many people with CMT complain about very cold and/or very hot feet? Is there any treatment or procedure I can use to alleviate this problem?

    Cold feet and cold legs are frequent complaints in individuals with CMT. The only treatment is to use leg warmers and decrease exposure of the affected areas to cold weather. Poor tolerance to cold weather is probably due to the loss of muscle mass in the feet and legs. The loss of muscle mass due to nerve fiber loss is the reason for the wasting of the legs and feet in individuals with CMT. Decreased muscle mass decreases the amount of blood that goes to the lower limbs. The circulating blood is what keeps the normal temperature in the tissues. Bones, tendons and joints require less blood.

    Hot or burning feet is a sign of axonal neuropathy (loss of wiring of the nerves). Involvement of the axons is frequent in CMT. Pain due to the nerve damage in CMT responds to Neurontin (gabapentin) an anticonvulsant. This is a medication that needs to be prescribed, preferably by a neurologist.

  • I have a problem with food sticking in my throat and being uncomfortable when I eat. Is this something that CMT can cause, or is it likely to be something else?

    Although not a problem commonly associated with CMT, there have been reports of people with the disease having issues with swallowing. It is certainly not the norm, but muscles other than the arms and legs can be weakened by the disorder. Please see an expert CMT neurologist for further evaluation.

  • Can a doctor differentiate between carpal tunnel syndrome and the problems inherent in the hands and arms of CMT patients?

    Carpal tunnel syndrome does not appear to occur with increased frequency in patients with Charcot-Marie-Tooth. In the cases where I have diagnosed the condition in patients with CMT, I have found that it has been a result of cumulative or repetitive trauma.

    The diagnosis is a clinical one based on the occurrence of wrist and hand pain and numbness and tingling in the hand, intermittently, with activities, and at night. These symptoms are identical to those in patients without CMT.

    Because CMT disease causes weakness and wasting of all the intrinsic hand muscles and sensory deficits in all the digits, it is not possible to use those findings to confirm the diagnosis. However, it is possible to look for median nerve irritability at the wrist with provocative maneuvers.

    Finally, nerve conduction studies may be helpful in confirming the diagnosis by examining for a relative prolongation of the median motor distal latency as compared to that of the ulnar motor distal latency.

  • Is there a connection between CMT and trigeminal neuralgia?

    The link between CMT and trigeminal neuralgia is not common. There’s a study on the topic at: http://www.ajnr.org/content/25/3/494.full

  • Is there a relationship between spasmodic dysphonia and CMT?

    As far as we know there is no link. However, if there is vocal cord paralysis related to CMT, then there can be dysphonia, which usually looks different than spasmodic dysphonia.

  • Does CMT cause elevated CK (Creatine Kinase) serum levels?

    CK levels are often elevated in CMT patients, usually in about the 300 range. This is probably the result of denervated muscle. CK levels should NOT be > 1,000

  • Can CMT cause erectile dysfunction?

    There is remarkably very little on this subject. There has been some discussion of sexual issues in women, and erectile dysfunction in men was reported in 1994 by Dr. Tom Bird. There is also a reference to an article by Berghoff in 2009.

    We know that many neuropathies are associated with sexual dysfunction- diabetes is well described. So CMT could directly impact sexual function. But we just do not have enough research on the subject to give you solid data.

  • Can CMT cause aphasia (loss of ability to understand or express speech)?

    No. Aphasia is a language problem due to a brain lesion such as stroke or tumor. It has no relationship to CMT.

  • Is there any relationship between CMT and PAD (peripheral artery disease)?

    We are not aware of any relationship between CMT and PAD or arterial disease. Patients with very weak feet and legs can have cold feet that turn purple, but this is not arterial.

  • Does CMT affect blood pressure?

    As far as we know, CMT does not directly affect blood pressure.

  • Can CMT affect the heart?

    As far as we know, CMT does not affect the heart. CMT also does not affect the autonomic nervous system (ANS). The ANS is a part of the peripheral nervous system that regulates the functions of our internal organs, such as the heart, stomach and intestines.

  • Does CMT cause heartburn?

    >As far as we know, CMT does not directly cause heartburn.

  • I have developed flat feet and muscle wasting above the knees and into the thighs. Is this CMT or something else?

    Though these symptoms are not the most common symptoms of CMT, they are still in the realm of what is possible with CMT disease. People with CMT can present with flat feet and have muscle wasting above the knees and into the thighs.

  • Does CMT cause migraines?

    No. As far as we know, migraines are not a symptom of CMT.

  • Is there a link between hearing loss and areflexia?

    No, there is not a direct link between hearing loss and areflexia. It is true that people with many types of CMT, particularly types of CMT that affect myelin, have complete absence of deep tendon reflexes. A number of these cases may also have hearing loss secondary to their CMT.

  • Does CMT cause difficulty losing weight?

    As far as we know, there is no direct link between CMT and inability to lose weight. However, lack of exercise and fatigue can cause people with CMT to be sedentary. Some medications may cause weight gain, and thyroid issues or other medical conditions may make losing weight difficult. We suggest you see your doctor and a good nutritionist to help you with your weight loss.

  • Are myoclonic spasms a symptom of CMT?

    As far as we know, myoclonic spasms are not associated with CMT. However, muscle cramps are very common with CMT.

  • Is there a relationship between mitral valve prolapse and CMT?

    We are not aware of any relationship between CMT and mitral valve prolapse or, in fact, between CMT and any cardiac disease.

  • Can CMT cause shingles?

    CMT does not cause shingles, but shingles can cause an increase in nerve pain and worsening peripheral neuropathy.

  • Can CMT cause major depressive disorder?

    CMT does not cause major depressive disorder. However, people with CMT are more vulnerable to depression because they have to cope with a progressive illness.

  • Is there a connection between CMT and epilepsy?

    CMT is a disorder of the peripheral nervous system; epilepsy is a problem of the central nervous system. They are not likely to be connected.

  • Can CMT cause tremors?

    Tremors can be related to CMT. 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 fingers are in space (pseudoathetosis) so that fingers (and sometimes legs or trunks) have tremors. Please consult your neurologist to understand if your tremors are CMT-related.

  • Are tremors a common problem with CMT?

    CMT can be associated with tremors. Twitching of the fingers can also occur if there is a lot of weakness. Please see a neurologist as there are treatments for tremors and sometimes for twitching.

  • Is trigger finger a common problem with CMT?

    Trigger finger is a common problem and probably not related to CMT.

  • Can CMT cause osteoporosis?

    Not directly. The only relationship between the two is that inactivity from CMT can lead to osteoporosis.

  • Do high zinc levels cause or worsen CMT? My father wears dentures, and denture-adhesive agents such as Fixodent and Polygrip contain zinc. I’ve read that high levels of zinc have been found to cause peripheral neuropathy, balance issues, weakness, numbness, etc.

    We know of no special link between zinc and CMT, but it is true that excessive zinc causes the body to lose copper. Copper deficiency is a cause of sensory loss, imbalance, neuropathy and leg stiffness. All of these problems will interfere with function in CMT patients and potentially worsen the degree of neuropathy. However, a significant amount of extra zinc is needed to produce the problem. Eating coins, especially pennies, is one way to ingest excessive doses, but few people have that urge. Excessive supplements are also an issue but large doses are needed. People with the dental adhesive exposure used quite a bit more than manufacturer recommendations. One simple question is how long a tube of adhesive lasts. Many affected patients used one or more tubes a week to secure poorly fitting dentures; one tube should last at least 4-6 weeks. However, zinc has been removed from the latest formulations. If there is any doubt, copper and zinc levels are easily tested in the blood.

  • Is there a relationship between idiopathic/vasomotor non-allergic rhinitis and CMT?

    As far as we know, there is no association between CMT and idiopathic/vasomotor non-allergic rhinitis. However, if the patient and doctor think this could be cause by the nerves, they might want to try treating with nerve pain meds such as gabapentin.

  • Have you ever heard of having elevated alkaline phosphonate levels due to CMT? My ALP has been climbing the last 6 months and my doctor is convinced it’s CMT-related.

    As far as we know, there is no relationship between alkaline phosphate levels and CMT.

  • Is there a connection between CMT and fibromyalgia?

    Fibromyalgia (FM) and CMT are most likely unrelated disorders, but the symptoms of the two can overlap. For example, people who have CMT can have fatigue, muscle aches, pains and cramps, and lack of energy, which are common symptoms in FM. I am not sure the diagnosis of FM can be made with confidence in many persons who have CMT, unless the FM symptoms are quite pronounced, particularly in view of the fact that there is no general agreement about what FM is or its cause.