Has anyone used electrostimulation to help restore atrophied muscle tissue in calves due to CMT?

[B1941]

I am fifteen years into CMT but no official diagnosis till 2006, Have been in leg braces five years and have complete atrophy in calves.

[platespinner]

The difficulty lies in the damage to the nerves to the muscles. Those with spinal cord injuries still have functioning nerves and these can be stimulated and devices have been developed to help people walk. Our remaining nerves innervate much larger groups of muscle cells than is usual and these cells seem to be switched on more often, possibly leading to the overuse fatigue, and ligament strain and pain that many of us experience. My thigh muscles are relatively well preserved, my back muscles are always working at full stretch, (very firm when palpated), unless lying down.

I am interested to know what kind of brace is being used and whether anyone in the UK has tried a Helios or Ossur AFO dynamic orthosis? iI so did they have to go to the USA or Europe for one?

Going back to the problem of muscle stimulation, there may well be problems with neuro-feedback and control due to lack of proprioception due to "large" sensory nerve cell death compounding our difficulties.

One piece of research that I would like to see is to answer the questions " does the use of a "vibra plate" exercise machine (which might exercise our remaining muscle cells very effectively, but in a very short time span) lead to more or less fatigue and the effect on muscle loss. Might it help preserve what we have or possibly speed up muscle loss due to overuse, or both depending upon how often and for how long it is used?

In contrast to research on the value of hydrotherapy which is very expensive, pilot studies might be relatively inexpensive and a cross over design might be possible.

If I buy a machine I might try what is known as an "n of 1" study to see whether it works for me! It will give me something else to try, the Vitamin C did not work.

I find hydrotherapy very useful, but correlation is not cause (CINC), and good research needs to be done not just on the physical but on the possible psychological benefits too.

[Whiterose in reply to platespinner]

Hi having used the 'vibra plates' I found them to help stimulate and prevent odema in my ankles and support other muscles. Having said that I soon learned not to do it every day. The reason was I felt very tired and my muscle spasms increased. So I use the plates on alterative days. I would love to be able to continue swimming, but find the water in the local swimming pools to be too cold and full of chlorin. Hydrotheraphy would be great but as you stated expensive. Your right all these things would in my opinion increase the 'feel good' factor. Try B12 as a vitain supplement those with CMT are not able to process this vital vitamin or ask your G.P to test you to see if you are lacking in this Vitamin. I did think about buying a power plate but know I would not use it so often. Plus there is a social aspect of going out and meeting people also using power plates. Let us know how you get on. Kind regards. Terese

[B1941 in reply to Whiterose]

Did you get results or any twitch from the vibra plates?

[B1941 in reply to platespinner]

I have never had hydrotherapy recommended. Is this done in a PT clinic or are there bathtub units available. My newest braces are lightweight titanium(?). They go down the back of my leg and insert under the shoe pad. I wear a smaller shoe than when I had the molded plastic braces. My wife just put me on Vitamin C after reading about the "rat" experiments. What about V B12? Never heard of vibra plates. Just had a handheld unit demonstrated but barely got a twitch.

[Whiterose]

Hi Platespinner, the result I got was a little toning up all over. I have not been able to go recently following a fall and badly damaging my left wrist, as I am unable to drive to get there. The xray show no fracture but the tendons are pretty sore and my hand is weaker as a result. Impacting on my right hand which is having to work harder. This has increased carpel tunnel symptoms. Let me know how you get on should you give the plates a go.. Terese

[John1945]

Hello to everyone diagnosed with Cmt ......

Just a word of caution !

Any fellow Cmt sufferers, who have any type of Cardiolgy / Heart problems, must seek medical advice before applying, or using electro stimulation devices:

As the magnetic pulses released by these devices can certainly interfere with the Cmt sufferer's own heart beats, and its regular sinus rythmns !

Cmt patients will also have to be most careful, and in particular those suffering from, and currently using Pacemakers :

Caution, is also needed, as Cmt patients, with certain cardiology conditions, such as Atril Fibrillation - Heart Failure - High Blood Pressure - Heart Sinus Rythmns etc ? ? ?

Please seek medical advice before using these devices !

[softkins]

I have had this, but unfortunately it didn't work as the nerves were too damaged in my feet and it didn't lift the drop foot