Guest guest Posted January 21, 2004 Report Share Posted January 21, 2004 let me ask again about wasting....... do we with PLS " generally " have any wasting? i know you (mark) said it is insignificant if we do, but what exactly would " insignificant " mean? my right leg, first and most affected, is terribly wasted....it looks......yucky...thin, seems to just dangle there. LOL I often wonder how in the world it holds my weight. to me it seems very significant, but then it's my leg. perhaps anyone else looking at it wouldn't think it was so bad. and also the lower vs. upper motor neuron.....i'm assuming then that since i can't move my foot or toes on that right leg, then i have some LMN involvement.....is that correct? can you all move your toes even if you have an affected leg? just curious here. thanks bunches, maggie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 21, 2004 Report Share Posted January 21, 2004 Maggie, I too have wasting not just in my right leg but also my right shoulder. I can't move my toes on the right foot. In a sitting position I can't lift my right leg. Sandy mark's info and wasting let me ask again about wasting....... do we with PLS " generally " have any wasting? i know you (mark) said it is insignificant if we do, but what exactly would " insignificant " mean? my right leg, first and most affected, is terribly wasted....it looks......yucky...thin, seems to just dangle there. LOL I often wonder how in the world it holds my weight. to me it seems very significant, but then it's my leg. perhaps anyone else looking at it wouldn't think it was so bad. and also the lower vs. upper motor neuron.....i'm assuming then that since i can't move my foot or toes on that right leg, then i have some LMN involvement.....is that correct? can you all move your toes even if you have an affected leg? just curious here. thanks bunches, maggie ------------------------------------------------------------------------------ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 21, 2004 Report Share Posted January 21, 2004 Maggie, I don't know where the line is that separates insignificant from significant wasting. That's a question for a neurologist. (I am not a physician.) But " terribly wasted " sounds significant. That you can't move your foot or toes on your right leg could be caused by either damage to UMN's or LMN's. (A spinal cord injury victim who can't move below the point of injury has solely an UMN injury. The LMN's remain completely intact. They simply get no signal from the UMN's.) Since you have terrible wasting in that leg, it could be both UMN's and LMN's. I can move my toes, but not well. Mark > let me ask again about wasting....... > > do we with PLS " generally " have any wasting? i know you (mark) said > it is insignificant if we do, but what exactly would " insignificant " > mean? > my right leg, first and most affected, is terribly wasted....it > looks......yucky...thin, seems to just dangle there. LOL > I often wonder how in the world it holds my weight. to me it seems > very significant, but then it's my leg. perhaps anyone else looking > at it wouldn't think it was so bad. > > and also the lower vs. upper motor neuron.....i'm assuming then that > since i can't move my foot or toes on that right leg, then i have > some LMN involvement.....is that correct? > > can you all move your toes even if you have an affected leg? > just curious here. > thanks bunches, > maggie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 21, 2004 Report Share Posted January 21, 2004 When I hold up my arm, the skin hangs . It looks like an elderly persons arm. If I hold up my leg, my calf hangs like an elderly leg. My thighs hang too like an elderly thigh. That is where my muscle atrophy is. Hope I explained to you what it looks like. Sherry Dx ALS 7/02 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 21, 2004 Report Share Posted January 21, 2004 Maggie you never told me if you had anEMG that cis how they determine some of the symptoms GEO mark's info and wasting let me ask again about wasting....... do we with PLS " generally " have any wasting? i know you (mark) said it is insignificant if we do, but what exactly would " insignificant " mean? my right leg, first and most affected, is terribly wasted....it looks......yucky...thin, seems to just dangle there. LOL I often wonder how in the world it holds my weight. to me it seems very significant, but then it's my leg. perhaps anyone else looking at it wouldn't think it was so bad. and also the lower vs. upper motor neuron.....i'm assuming then that since i can't move my foot or toes on that right leg, then i have some LMN involvement.....is that correct? can you all move your toes even if you have an affected leg? just curious here. thanks bunches, maggie ------------------------------------------------------------------------------ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 21, 2004 Report Share Posted January 21, 2004 > Maggie you never told me if you had anEMG that cis how they determine some of the symptoms GEO >>>> GEO sweetie, I've had 5 EMGs through the years....a mylogram, cat scans, blood work. i cant have an MRI because i have metal implants in my ears and a piece of metal in my cheek holding my cheek bone together. maggie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 22, 2004 Report Share Posted January 22, 2004 > Maggie, > I too have wasting not just in my right leg but also my right shoulder. > I can't move my toes on the right foot. In a sitting position I can't lift my right leg. Sandy > hi sandy, thanks for your response. although i'm sorry that you also have these symptoms, it helps knowing that we're not alone and that apparently these are pretty common among us. try shaking your finger at those defiant little toes and see if they perk up any. mine don't pay a bit of attention to me, though. maggie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 22, 2004 Report Share Posted January 22, 2004 Sherry, I have only actually seen one instance of muscle wasting--on a young person with ALS. She was in her hirties when diagnosed with ALS and passed away two years ago. Her legs looked like toothpicks--merely skin covering bone. That is significant muscle wasting. Mark > When I hold up my arm, the skin hangs . It looks like an elderly persons arm. If I hold up my leg, my calf hangs like an elderly leg. My thighs hang too like an elderly thigh. That is where my muscle atrophy is. > Hope I explained to you what it looks like. > Sherry > Dx ALS 7/02 > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 22, 2004 Report Share Posted January 22, 2004 Sherry, Sounds like your skin is growing or you're losing weight. Also, since we have PLS, we really don't get enough exercise to keep our muscles strong and well-toned. Stretching would be of benefit to help tone some of your muscles. I know that my lower legs have gotten smaller, especially my right one. That is the leg I began having the most problems with, but my left side is the most affected. Now, if only my waistline would get smaller. Mike Gray Sherry wrote: >When I hold up my arm, the skin hangs . It looks like an elderly persons arm. If I hold up my leg, my calf hangs like an elderly leg. My thighs hang too like an elderly thigh. That is where my muscle atrophy is. >Hope I explained to you what it looks like. >Sherry >Dx ALS 7/02 > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 23, 2004 Report Share Posted January 23, 2004 Mike, I am weighed everytime I go to a clinic. I just got back from University of Michigan . Weighed the same. I also weigh myself here. No...I have muscle atrophy. what was once muscle filling in is now just the skin. Tthat is how muscle atrophy looks . Skin takes along time to shrink. what you described about the girl being nothing but bone was extreme. Obviously she was very malnourished. Probably did'nt have a PEG tube. Sherry Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 23, 2004 Report Share Posted January 23, 2004 Just trying to be of help GEO Re: mark's info and wasting > Maggie you never told me if you had anEMG that cis how they determine some of the symptoms GEO >>>> GEO sweetie, I've had 5 EMGs through the years....a mylogram, cat scans, blood work. i cant have an MRI because i have metal implants in my ears and a piece of metal in my cheek holding my cheek bone together. maggie ------------------------------------------------------------------------------ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 23, 2004 Report Share Posted January 23, 2004 I also have wasting in my left leg, but I can still move it. Donna > Maggie, > I too have wasting not just in my right leg but also my right shoulder. > I can't move my toes on the right foot. In a sitting position I can't lift my right leg. Sandy > > mark's info and wasting > > > let me ask again about wasting....... > > do we with PLS " generally " have any wasting? i know you (mark) said > it is insignificant if we do, but what exactly would " insignificant " > mean? > my right leg, first and most affected, is terribly wasted....it > looks......yucky...thin, seems to just dangle there. LOL > I often wonder how in the world it holds my weight. to me it seems > very significant, but then it's my leg. perhaps anyone else looking > at it wouldn't think it was so bad. > > and also the lower vs. upper motor neuron.....i'm assuming then that > since i can't move my foot or toes on that right leg, then i have > some LMN involvement.....is that correct? > > can you all move your toes even if you have an affected leg? > just curious here. > thanks bunches, > maggie > > > > -------------------------------------------------------------------- ---------- > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 17, 2004 Report Share Posted February 17, 2004 Maggie you sound just like me trying to get answers about my husband and no one seems to know the answers. He has been ill for almost 8 years now and has only gone from bad tow worse he also has wasting in the hands, arms, legs, he also no longer has anything that works right anymore. He is full time in a wheelchair now. Bowels don't work bladder, arms, legs, voice, swallow, so much don't really know how he goes on. But with all this and all that said the doctors still say PLS. He is also in constant pain with his bladder prostrate and bowels. He just crys sometimes from the pain. Have not posted in a long time have really had my hands full. Thanks Shirley P.S. Don't know if any of this helps but sure felt good to get it off my chest. ( Sorry ) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 17, 2004 Report Share Posted February 17, 2004 Maggie, I am curious by your comment " But with all this and all that said the doctors still say PLS " ? Why don't you think it's " just PLS " . I have had it for only about 1 1/2 years but I have most of the same symptoms, just not as bad yet. Both of my neurs said that I should expect this with the aggressive form I have (and it sounds like your husband). I know it won't make it better but I guess I was just puzzled. dale Re: mark's info and wasting > Maggie you sound just like me trying to get answers about my husband and no > one seems to know the answers. He has been ill for almost 8 years now and has > only gone from bad tow worse he also has wasting in the hands, arms, legs, he > also no longer has anything that works right anymore. He is full time in a > wheelchair now. Bowels don't work bladder, arms, legs, voice, swallow, so much > don't really know how he goes on. But with all this and all that said the doctors > still say PLS. He is also in constant pain with his bladder prostrate and > bowels. He just crys sometimes from the pain. Have not posted in a long time have > really had my hands full. Thanks Shirley > P.S. Don't know if any of this helps but sure felt good to get it off my > chest. ( Sorry ) > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 17, 2004 Report Share Posted February 17, 2004 > Maggie, I am curious by your comment " But with all this and all that said > the doctors still say PLS " ? Why don't you think it's " just PLS " . >>>>>> Dale, that was our sweet shirley who said that. and with all that she has been through with her dear husband, i can completely understand why she said it..... see below. maggie > > Re: mark's info and wasting > > > > Maggie you sound just like me trying to get answers about my husband and > no > > one seems to know the answers. He has been ill for almost 8 years now and > has > > only gone from bad tow worse he also has wasting in the hands, arms, legs, > he > > also no longer has anything that works right anymore. He is full time in a > > wheelchair now. Bowels don't work bladder, arms, legs, voice, swallow, so > much > > don't really know how he goes on. But with all this and all that said the > doctors > > still say PLS. He is also in constant pain with his bladder prostrate and > > bowels. He just crys sometimes from the pain. Have not posted in a long > time have > > really had my hands full. Thanks Shirley > > P.S. Don't know if any of this helps but sure felt good to get it off my > > chest. ( Sorry ) > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 17, 2004 Report Share Posted February 17, 2004 Oops, sorry but my question still stands. I am not belittling anything, I am just curious because I am told to expect that from my PLS. dale Re: mark's info and wasting > > > > > > > Maggie you sound just like me trying to get answers about my > husband and > > no > > > one seems to know the answers. He has been ill for almost 8 > years now and > > has > > > only gone from bad tow worse he also has wasting in the hands, > arms, legs, > > he > > > also no longer has anything that works right anymore. He is full > time in a > > > wheelchair now. Bowels don't work bladder, arms, legs, voice, > swallow, so > > much > > > don't really know how he goes on. But with all this and all that > said the > > doctors > > > still say PLS. He is also in constant pain with his bladder > prostrate and > > > bowels. He just crys sometimes from the pain. Have not posted in > a long > > time have > > > really had my hands full. Thanks Shirley > > > P.S. Don't know if any of this helps but sure felt good to get > it off my > > > chest. ( Sorry ) > > > > > > > Quote Link to comment Share on other sites More sharing options...
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