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  • nerves

    The latest EMG show that if electrically stimulated, my muscles work, but I can't do it on my own. It doesn't make sense to me. I've hit a plateau & it's driving me nuts! (ok, short trip)

  • #2
    I know exactly how you feel. Well maybe not exactly cause my husband is the one dealing with MS and he tells me all the time I have no idea what its like. But he is having the same problem. He just started Ampyra about a month ago and that has seemed to help alot. He has been standing at least once a day for about 30 seconds, something he hasn't been able to do for 4 1/2 years now. But his left leg still is so darn stiff, I was trying to do exercises with him the other night while he was sitting in his chair, I said lift your right leg, lifts right up, I say lift your left leg, you can see the muscle all tighten up and try to move but it just wont go, he says my sandle is stuck on the footrest, I didn't have the heart to tell him it wasn't stuck but why...I just don't understand if the command is getting from the brain to the muscles to move, why won't it move? I see them trying to move but not enough.

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    • #3
      Yep. I 'tell' them to move, and if they do at all, it's the tiniest of bits, but otherwise...
      There's something there, but Ugh! It's so frustrating!
      I'm gonna try swimming again, maybe that'll wake things up

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      • #4
        We just opened our pool last weekend, waiting on the water to get warm. It was just about there and then it rained for two days and cooled it back down. I also ordered David the water workout kit, which is some dumbbells and a bouyancy belt as well as some bouyancy shoes, hopefully that will help too.

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        • #5
          we've had 14 of the last 17 days of rain, thunder & lightning, even a couple of little tornadoes here - it's been so odd! I need to get back into the Y again, but having to use an AFO...I haven'r been swimming since I started with it.

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          • #6
            Wow, hope the weather straightens up for you. Have you got a exercise plan that you do consistently?

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            • #7
              If you have MS, like I do, or an undiagnosed malady, like I did...I have/had a similiar problem. My legs don't work. I still have significant muscle mass and even definition...but, most of the time, my brain says "walk" and my legs answer "say what?".

              I asked my PT to prescribe an Electro Stim unit for me....she did...and as it turns out, my insurance paid for it. About $1200 (I figure they add about $500 for every time its says "medical" on the label. I could have "McIver'ed" the same thing with an extension cord and a couple of parts from Radio Shack)

              Anyway, what I've got is an EMPI 300v. It provides small electrical shocks to muscles and nerves. You'll need a PT to help you with placement of the electrodes. The idea is, you use the EMPI unit to shock the muscles, and, at the same time use your own volition to control the movement. After a while, you supposedly retrain the nerver and muscles to work together.

              The theory behind this is explained at www.terrywahls.com . There are also several scientific articles about the process which you can find thru google.

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              • #8
                Does the water therapy help Coleen?

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                • #9
                  I've never tried (or been offered) water therapy, so I don't know if it'd help, but then, I haven't been even near water (except my daily showers, of course) since I've been wearing an AFO, so I don't quite know what to do - do I go to the water's edge & take it off, will they even let me near the pool, etc. Ugh. I just want my muscles to work when I tell them to! It's so frustrating - the doc's look at me like I'm faking, I have some (not good, though) reflex when they pop me with their hammers (in my knees) but nothing when they play with my foot, but they tend to believe that I should be able to move one m,y own. Since the accident, I haven't been able to...
                  I don't feel anything except big time hurt - like when my 160 pound boy stomps on me - but my 9yo likes to sit at the dinner table & 'touch' or gently touch my foot & leg & I don't know he's doing it because I can't feel it. It's SO frustrating!
                  Sorry for the long post.

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                  • #10
                    For some reason, they don't offer water therapy here for MS patients. If you go to the MS web pages they do but not here locally. I got a pool lift and put David in our pool all on my own. He has a suprapubic cath and has a bowel program that we follow so they won't let him any local pools here either due to infection possibilities. Anyway, last year (3 1/2 years of not being able to walk) he stood up in the pool, it was kinda like the muscles were able to work easier. Don't know why but I strongly recommend you check into it and get back into the water.

                    As for the electrical stimulation I have been studying up on that as Davids rehab Dr. mentioned it and said he would write a prescription and see if insurance would cover it but wanted him to go to therapy first. He is going 2 times a week, just started yesterday and will go again tomorrow. The therapist doesn't seem to know anything about it. I will contact the rehab Dr. again, I think this will also help David regain some muscle back as it has been 4 1/2 years with no walking but the Ampyra is allowing him to stand now. Last night he broke a record and stood for 1 minute 15 seconds.!!! Yea!

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                    • #11
                      Great news about David!! Keep it up!

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                      • #12
                        Originally posted by MSWIFE1 View Post
                        As for the electrical stimulation I have been studying up on that as Davids rehab Dr. mentioned it and said he would write a prescription and see if insurance would cover it but wanted him to go to therapy first.... The therapist doesn't seem to know anything about it.
                        Yeah, I had some problems finding a PT who knew what she was doing. You have to keep looking to find someone who knows where to put the electrodes. The PT I'm seeing now points out that when the muscle twitches, you need to try to voluntarily move the same area. She's set up the combination so that when I'm sitting, I can lift my feet up off the floor.

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                        • #13
                          Thanks Colleen, he goes back to therapy tomorrow. We are going to aim for a little longer each time.

                          Willing - we don't have much choice in therapists, our insurance is pretty particular about where we go, plus its so hard to take off work or find someone else to drive David back and forth all the time. The rehab Dr. is great, I can read something here or elsewhere on the net and call him, he will call back and discuss it with me in detail. It seems like I have to find something first though because they don't seem to want to give us any ideas. They are not specialized in MS so I don't think they really know either.

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                          • #14
                            Sounds like u would benefit from biofeedback. There was a discussion here about it b4.

                            https://www.facebook.com/john.baxter.1213986

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                            • #15
                              The page at http://www.empi.com/empi_products/detail.aspx?id=188 shows a PDF listing the motor points for the EMPI 300. I did some experimenting on my own before I found my current PT...the manual is written in "doc-speak", but you can figure it out.

                              For legs, I used NMES setting 6...with the larger pads...placed the red electrode (red always goes closest to the heart) on the Femoral Nerve point, and the black electode on one of the other points on the thigh. I then adjustested the intensity until I felt pain from the twitches and then backed off a little. I am amazed that I can straighten out my legs and / or lift my feet off the floor with each jolt.

                              Of course, YMMV, but both the PTs I've dealt with and my MS doc have assured me it can't do any harm as long as you back off from the pain.

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