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This topic looks at the all the questions you have wondering if your symptoms can be part of CMT. CMT can be a frightening disease, especially if your doctor knows little about it and you have an active imagination. The questions below should help you relax and understand that every ache and pain you have isn't CMT. However, it is always wise to have a new ache or pain checked out. Just because you have CMT doesn't mean you can't have something else as well.

CMT and ? - Autism or CMT?
My brother's son is four years old and has worn braces since he could walk. He has never spoken a word. Only now is he starting to grunt. He was diagnosed as being autistic at Hershey Medical Center in Hershey, PA. Another doctor examined him later and said he is not; his problem is poor muscle tone. He was examined by a pediatric orthopedic doctor, but was not told about my son having CMT. Could this be a form of CMT also?

Dr. Charlotte Thompson answers: It would be important to have the child's hearing checked in a pediatric hearing center. Then I would want a good neuropsychologist to do testing if this has not been done. School testing is usually not adequate. I have had a CMT patient who is also autistic, so this could be a real possibility. I would not think about the vocal cords as long as he is grunting. Vocal cord paralysis to my knowledge has not been described in children and I've just seen it only in older CMT patients.

CMT and ? - Diabetes and CMT
Question from Jennifer Mouritz: I was wondering if there is an association between CMT and diabetes. There seem to be many people with CMT who are type 2 diabetics. Or, is it that we often are not able to exercise easily that puts us more at risk of acquiring diabetes. Any thoughts or information would be greatly appreciated.

Dr. Parry answers: There is no recognized relationship between CMT and diabetes. I think that it is just that diabetes is a very common disease. An estimated 12-15 million Americans have diabetes and there are perhaps as many as 200,000 people with CMT. That means that there are going to be a lot of coincidental associations.

CMT and ? - Endometriosis and CMT
Question: I would be interested in finding out how many females with CMT have had endometriosis. I was surprised to see it mentioned by someone in one of the newsletters. That was why I had a hysterectomy last summer. My neurologist got this ball rolling by stating that any muscle system could be affected with CMT; the uterus is a muscle.

Dr. Lowell Williams answers: Although, as you point out, the uterus is a muscle, the illness of the muscle in endometriosis is different from CMT muscle disease. In endometriosis, there are multiple areas of marked inflammation in and on the uterus and in the lower abdominal cavity around the uterus that cause severe pain. In CMT, there is atrophy or loss of certain muscle groups with hypertrophy or overgrowth of other muscle groups thought to be due to nerve damage. Inflammation is not usually present, and muscle pain in CMT is secondary to the nerve problem and cramping. Clearly these conditions are different in appearance and cause and may just happen together sometimes.

CMT and ? - Mitral valve prolapse
Question from F. Kay Watson in Texas: I am currently faced with a new situation and would like to know if you have any information about this new problem. I was rushed to the hospital a little over a week ago with chest pains. I thought I was having a heart attack, I wasn't, but I do have some minor blockage (50% in the left artery and 60% in one of the branch arteries) but another problem was found. I have a mitral valve prolapse. Both my cardiologist and cardiac surgeon mentioned that due to my neuromuscular disease they were more concerned as the heart is also a muscle. I don't recall ever reading about people with CMT having any heart difficulties. I don't believe they were saying this is due to the CMT but I believe they are wondering if that is a possibility. I was wondering if you might have some information for me. I am now taking a cholesterol lowering medication and will have to return to the doctor frequently for blood work. I look forward to hearing from you.

Dr. Parry answers:I am not aware of any relationship between CMT and mitral valve prolapse or, in fact, between CMT and any cardiac disease. CMT can affect autonomic function (cold, sweaty and purple feet are common!) and may possibly affect the autonomic fibers that go to the heart but it must be very rare. I have never seen a patient with clinically significant heart irregularities as a result of CMT.

CMT and ? - CMT and rosacea
Q:
A reader asks if there is anyone with CMT and rosacea. We know there are people who have CMT and rosacea but the incidence is likely no more than in the non-CMT population. A: Evelyn Reeve answers. I have rosacea and have been treating it with Metrogel. Mine would be considered a mild case – worse in winter when the weather is extra cold.

CMT and ? - Seizures and CMT
Q: Can seizures be part of CMT?

Dr. Thomas Bird, Chief of Neurology at the VA Medical Centre in Seattle, Washington answers: CMT and seizures don't usually go together. If someone has CMT and seizures it is either an unrelated coincidence (seizures are not rare) or some very unusual disease and not typical CMT. Also, petit mal is a very specific neurologic diagnosis that requires EEG confirmation and does not refer to people who simply feel queasy with flashing lights.

Linda here: Every other doctor I have asked seems to feel the same. Seizures are not something you can self-diagnose. They can also be so light that you hardly know you've had one or they can really frighten you with their strength. In any case, if you think you are having seizures, please see your doctor.