Electronic Muscle Stimulation

[Modjeskatim]

I am new to this site so forgive me if this is a topic that has been discussed already. I am interested if anyone has tried Electronic Muscle Stimulation and how it has worked for them. My legs are nearly useless and having the muscles contracted and exercised sounds like a good idea. I'm not sure how it works with spasticity though. Thanks

[COwithAMN Administrator AMN EASIER Volunteer]

Hi there,

This is a good question. However, the only muscle stimulation system that has been shown to work for some people is the Functional Electrical Stimulation (FES) system.

Have a look at odstockmedical.com/ as one source for this.

But you write as though you are looking at a system that exercises muscles and I would be skeptical about any claim that this would help. With AMN, the legs unfortunately deteriorate over time. If you can exercise them even a little yourself then this would be better.

You don't say where you live - it may help us to know this.

With all good wishes

Chris

[Lexington40 in reply to COwithAMN]

I have been using a Bioness L300 Plus electro stimulation unit on my leg for almost a year. It stimulates the Peroneal nerve that controls the calf muscle. Due to spasticity from AMN, I could no longer lift my foot. The stim unit allows the muscle to contract so that I am able to lift my foot. It is a lifesaver. The unit may also improve the spasticity over time. I went through 8 weeks of "Gait" Therapy to correct my walking, since I had been compensating with my other foot. The downside is that this unit is typically not covered by insurance and costs around $7,000.00. It has saved me many falls, so well worth the cost to me.

[SusanBr]

I used the FES as mentioned by Chris below and they helped with right drop foot for couple of years and eventually used on left leg as well. It helped me lift the leg as stimulation to nerve upon lifting foot. However I fell and broke right hip and this was set with foot facing out and seemed to help. Not recommended. Also the left leg stopped being any good and had to give up.

However I do go to a therapy centre which has power assisted equipment so moves muscles which keep them stimulated.

Agree with Chris any form of exercise good even just lifting legs whilst sitting or standing at kitchen unit and moving legs.

Good luck Sue

[Modjeskatim in reply to SusanBr]

Thank you very much for the help. I also fell and broke my right hip about 5 years ago and have been timid in my activities since. My endocrinologist told me that with my severe Addison’s another serious fracture could kill me.

[Aaron98]

Welcome to the site, modjeskatim. Along with your location, as Chris mentioned, it would be helpful if we knew your age, too. Thanks!

[Modjeskatim in reply to Aaron98]

My journey has been a long one. I’m 66 years old now, in my late 20s early 30s I knew something was wrong but wasn’t diagnosed until I was 37 in 1990. First with very serious Addison’s and then my endo sent me to a neurologist. In the mid 90s I was in contact with a number on men with ALD and AMN but it was rare to find someone the age I am now. I don’t know how many members of this forum are in my age group but I’d like to meet some of them or be available to anyone with questions.

[COwithAMN Administrator AMN EASIER Volunteer]

Hi modjeskatim

There are quite a few men with AMN who are around your age group. Don't let your age be a deterrent to keeping going. I am 74.

You don't say where you live. I am in London if you are close to t.

Chris

[Modjeskatim]

Nice to meet you Chris. I live in California, on the fringe of the Los Angeles metro area.

[monkeybus]

I am a big fan of EMS. It works on many levels.

Tens has been proven to ease spasticity and muscle spasms.

FES can work your muscles (though not very well), but it can also stimulate different nerves to fire up muscles. This is a big thing when your nerves are demyelinated.

Hard work strapping those electrodes to your legs, I keep forgetting to use my EMS box, I don't know why.