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Exercise/Physical Therapy/Other Therapies Questions

  1. I am 46 years old and have Charcot-Marie-Tooth disease (CMT). For about five years, I have been wearing AFOs all day. My ability to stand still for any length of time has gotten significantly worse. What I mean by not being able to "stand still" is that I lose my balance. I have no problem whatsoever with getting stiff or with my legs being restless. My thinking is that wearing AFOs all the time might somehow be contributing to additional atrophy of my calf and foot muscles, which I presume is what causes balance problems. Does wearing AFOs have any effect on how rapidly muscle tone is lost? Also, will exercise on a health rider (something like a stationary bike) be helpful or harmful? Finally, you should know that I've gained a fair amount of weight after I quit smoking.
  2. I am a student of massage therapy and I have a friend who has CMT. She is 21 and all the women in her family have the disorder. Some of the symptoms I've read about are treatable with massage therapy. Are there any contraindications? Is there a type of massage therapy that should not be practiced on someone with CMT? Can massage therapy prevent the need for surgery?
  3. Does TES (threshold electrical stimulation) help with CMT disease at all? I have read anecdotal reports on two children in California mentioned on the home page who were able to give up their braces and had improved muscle mass on their lower calves. Do you have any evidence that this procedure does work for CMT patients?
  4. Following several mentions of hyperbaric oxygen therapy(HBOT) on television shows, I began to wonder if it might be helpful for peripheral neuropathy, specifically CMT. I realize that CMT is genetic and that the actual neurological damage would not be reversed, but I wonder if the increased cellular respiration could possibly lead to a slowing of the progression of CMT or a decrease in some of the neuropathic pain symptoms I experience. Could HBOT, properly administered, cause an exacerbation of my CMT?
  5. My Neurologist said he was at a recent conference and learned that IV prednisone had been very helpful in the fatigue part on HNPP. I started this today. It is 250 ml once a day for 6 days, then once a month after that if it helps me. It has given me more energy and I am so thankful for that. I actually was able to walk around the block with my husband and go to dinner with my sister. Yesterday, I could hardly walk 50 feet without being exhausted.
  6. Will weight training cause my CMT to increase in severity?

Exercise/Physical Therapy/Other Therapies Answers

1. I am 46 years old and have Charcot-Marie-Tooth disease (CMT). For about five years, I have been wearing AFOs all day. My ability to stand still for any length of time has gotten significantly worse. What I mean by not being able to "stand still" is that I lose my balance. I have no problem whatsoever with getting stiff or with my legs being restless. My thinking is that wearing AFOs all the time might somehow be contributing to additional atrophy of my calf and foot muscles, which I presume is what causes balance problems. Does wearing AFOs have any effect on how rapidly muscle tone is lost? Also, will exercise on a health rider (something like a stationary bike) be helpful or harmful? Finally, you should know that I've gained a fair amount of weight after I quit smoking.

Loss of balance while standing isn't uncommon with CMT because of loss of proprioception in the joints of the lower extremities starting with the ankles. Wearing AFOs may provide some stability. Another possibility is just wearing elastic or neoprene anklets. The use of braces does contribute to additional atrophy in the calf and foot muscles. Muscular activity is required for protein synthesis and what you don't use, you lose. There is always a "trade off" between atrophy and stability. The question is how vital is the need for stability and will the AFOs provide this? This can only be determined by an appropriate examination and clinical trial. In any event, you should have the orthoses evaluated. They may require refitting or modification.

Use of a "Health Rider" wouldn't be harmful. High-repetition, low-load exercise, as long as it's not continued to the point of exhaustion, should help maintain muscle tone. Such exercise may also help with your weight problem. However, you should be following a well-balanced, but low-calorie diet because of your relatively sedentary state. A consultation with a dietician would be helpful.

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2. I am a student of massage therapy and I have a friend who has CMT. She is 21 and all the women in her family have the disorder. Some of the symptoms I've read about are treatable with massage therapy. Are there any contraindications? Is there a type of massage therapy that should not be practiced on someone with CMT? Can massage therapy prevent the need for surgery?

Massage is often appropriate for people with neuromuscular disease. Because of frequent muscle strength imbalances, with some muscles becoming shortened and some becoming overstretched, massage can assist in maintaining muscle tissue mobility and thus aid in decreasing pain. I am not sure it could help prevent the need for surgery, unless only minor muscle restrictions are the problem.

As to contraindications, the most important is that people with CMT have sensory loss and abnormalities. A sensory exam should, therefore, precede any vigorous massage session or the use of heat/cold therapy.

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3. Does TES (threshold electrical stimulation) help with CMT disease at all? I have read anecdotal reports on two children in California mentioned on the home page who were able to give up their braces and had improved muscle mass on their lower calves. Do you have any evidence that this procedure does work for CMT patients?

I am not aware of any medical evidence that TES is helpful in the treatment of CMT. Further, I am skeptical of stories about patients no longer needing AFOs or orthotic support due to TES. It is our feeling that good rehab medicine and an exercise program are likely to be more productive approaches to therapy.

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4. Following several mentions of hyperbaric oxygen therapy(HBOT) on television shows, I began to wonder if it might be helpful for peripheral neuropathy, specifically CMT. I realize that CMT is genetic and that the actual neurological damage would not be reversed, but I wonder if the increased cellular respiration could possibly lead to a slowing of the progression of CMT or a decrease in some of the neuropathic pain symptoms I experience. Could HBOT, properly administered, cause an exacerbation of my CMT?

I am not aware of any cases of CMT which have been treated with hyperbaric oxygen. I know of no reason, other than cost, why such treatment would be harmful. However, I would emphasize that CMT disorders are chronic and it is hard to imagine how a brief period in a pressure chamber could provide chronic support. There is no evidence, of which I am aware, to suggest that there are reduced amounts of oxygen to either neurons or Schwann cells in inherited neuropathies.

Hyperbaric oxygen treatment (HBOT) is great for decompression sickness and to speed the healing of some infections. I do not know of any research done using HBOT in any type of CMT. I doubt that it would be helpful, although I do believe it would be safe.

I'm not aware of any treatments for CMT that include hyperbaric oxygen. I'm also not sure how such a treatment might help, especially in the case of the forms where we know the defect in a specific myelin gene causes the problem.

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5. My Neurologist said he was at a recent conference and learned that IV prednisone had been very helpful in the fatigue part on HNPP. I started this today. It is 250 ml once a day for 6 days, then once a month after that if it helps me. It has given me more energy and I am so thankful for that. I actually was able to walk around the block with my husband and go to dinner with my sister. Yesterday, I could hardly walk 50 feet without being exhausted.

The tricky thing about steroids is to separate out the energy boost which people get when they first start taking them from a true therapeutic effect. Similar boosts often occur with IVIG (intravenous immunoglobulin). Usually these treatments are effective in patients with immunologically induced diseases, not genetic diseases. I am not aware of a study of pulse steroids in HNPP. It's worth pointing out that daily steroid use is associated with weight gain, diabetes, hypertension and other side effects, so people should be careful with these medications.

One of the commonest "side effects" of high dose steroids is euphoria. I commonly use pulsed high dose steroids for autoimmune neuropathies and sometimes for MS and the patients often note euphoria. Some complain of it, but most say they wish they could feel like that all the time. Paradoxically, a small number of patients become severely depressed and a few become overtly psychotic so the euphoria is not invariable and there may be very serious consequences. In addition, even monthly doses of steroids can result in osteoporosis and osteonecrosis although the skin changes, weight gain, fluid retention, diabetes, hypertension, etc. are less of a problem with these pulsed regiments. The bottom line is that I don't believe that the treatment is entirely safe and it is having no influence on the underlying disease so I would neither use nor recommend it.

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6. Will weight training cause my CMT to increase in severity?

Research into exercise in neuromuscular conditions has shown that there is no increase in weakness with low to moderate intensity weight training. The benefits of exercise far outweigh any risks of “over-work” weakness. Risks can be minimized by exercising at low to moderate level as advised by a physical therapist, not exercising to exhaustion and cutting back on the exercise if you experience excessive muscle soreness longer than 48 hours after exercising.

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