Guest guest Posted March 8, 2000 Report Share Posted March 8, 2000 Welcome to the group, . Weight loss is something that I have not heard people in the group complain about in our PLS symptoms. I've been thinking about trying to lose 10 pounds thinking maybe my legs wouldn't have as much weight to carry and it might be easier. Although I cannot relate to your problem I sympathize with you. I don't get any where near the exercise that I did a couple of years ago but I haven't noticed losing much muscle mass. All you can do is keep trying to find the problem albeit very discouraging at times which is definitely something all of us can relate to. Keep your spirit high. Gentner Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 8, 2000 Report Share Posted March 8, 2000 Thanks for your feedback. Any feedback is helpful, at this point. I still have pretty good mobility. My main issue over the past 2-3 years have been leg fatigue and neck and upper back pain/fatigue. Feels like I'm wearing 3lb leaded weight around my legs when walking. My legs get stiff and heavy (cold weather is much worse and at times I can't seem to get my right leg in front of the other) a few hours of rest seems to help. I'm either dragging my heels or tripping over myself. My muscles in my legs, hips and back become extraodinarilly tight and full of spasms during and after mild exercise. My balance has been off and I've already fallen on a few occassions...having lost my balance on uneven ground. Incoordination is another issue. I have a spastic gait after a short walk or mild exercise. I've had the " dropsies " lately and often drop items (I'll need to buy a new set of dishware if I keep this up..smile). Sometimes it's been difficult to pick up small items...my fingers seem incoordinated. These symptoms, along with my weight loss has brought me to my doctor. I'm 42 years old and my physical problem just doesn't seem normal. I've been very physically active in the past and nothing ever seemed to stop me. I've got a pretty good appetite, although, admittedly I'm not burning the calories as I had in the past ( I'm about 1/3 as active as I was 2 years ago). Maybe I'm not eating as much as I had before. My muscles are still very toned, just a lot smaller and full of spastic knots. I'm wondering if spastic muscles are metabollically fire furnaces? I don't know you, but you stating that you " sound lazy " sounds like something I say about myself...but it is not true it's just something I say cuz I feel embarrassed about my physical limitations. I just keep thinking I have to try harder...I'm very aware of the Catch 22 syndrome. Work out then pay for it later. A day or two s later I go back out and try it again...I'm not lazy, just slow on the uptake...smile. Thanks for your input. At 06:46 PM 3/8/00 -0000, you wrote: > > >I have lost about 20 lbs. over the last three years (170 --> 150). >My personal opinion is that it has to do with appetite. When you're >not feeling well, and tired all of the time, you're just not hungry! >I know I don't eat nearly as much as I used to (sometimes only one >meal a day). I'm usually in such a bad state in the morning, after >awakening, that breakfast is not something I can face. > >Also, I think general problems swallowing contribute to this. I get >TIRED trying to eat and carry on a conversation! I know I don't get >enough fluids because of the swallowing also. I have started keeping >a plastic water bottle close by, and that seems to help (don't have >to " Wheelie " on out to the kitchen for a sip). > >Just read what I've written so far, and I SOUND LAZY! I'm not. I >think, most of you know what I'm talking about. > >In regard to " muscle mass " : I'm in a wheelchair most of the time, but >what time I DO spend standing (stooped) and walking (very slowly) >seems to keep my legs in pretty good shape. But even with the manual >wheelchair my arms are like Jello. I have tried hand weights, and >that seems to help with the muscles, but the downside is the pain and >fatigue afterward ( " Catch-a 22 " ). > >According to two different neurologists, loss of muscle mass is not a >part of the " picture " in PLS (only ALS), so if you're clean on the >EMG, then, according to them, you're not REALLY losing weight or >muscle mass (even though they've just weighed you in the office) - >you're either lazy (couch potato) or a neurotic. > >I always try to get a little " neurology bashing " into each e-mail! > > B. > > > > >------------------------------------------------------------------------ >MAXIMIZE YOUR CARD, MINIMIZE YOUR RATE! >Get a NextCard Visa, in 30 seconds! Get rates as low as >0.0% Intro or 9.9% Fixed APR and no hidden fees. >Apply NOW! >http://click./1/2122/5/_/532384/_/952541202/ >------------------------------------------------------------------------ > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 8, 2000 Report Share Posted March 8, 2000 Hi , If indeed you find a PLS diagnosis, then you and I are symptom mates! Although my condition has progressed very slowly over 15 years, weight loss and muscle loss, particularly in my legs, has been noticeable. I was always thin with high metabolism, but now I am the proud owner of bird legs! Regular rowing does not bring the muscle back, but helps with flexibility. Maintaining a regimen of stretching and mild exercise is key to my successful fight with this very strange condition. Thanks for helping me feel a little less unusual! Bruce Maser Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 12, 2000 Report Share Posted March 12, 2000 Hi , Just wanted to welcome you to the group. Sounds like you have a great attitude. I'm gaining weight thru inactivity. Use to just run a few extra miles to burn off the desserts, but that's out for now. I'm trying to find the right exercise for me that doesn't cause other issues. Many in this group recommend it. Your hypotesis makes sense to me (the medically uneducated) that spastic muscles would burn calories. Just not enough in my case. Good luck, Alan Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 12, 2000 Report Share Posted March 12, 2000 Alan: Thank you for the welcome. I can see after just a few days of recieving messages from PLS's that I should have little to complain about. Many other's are far more advanced in their conditions than I. Because I've just started treatment, a few months ago, I have tons of questions stirring about in my head. I hope not to offend anyone and really just want to learn more about what I should expect in the future. I'm not a super woman, but I can accept adaptation and survival as needed to keep a cool head. My neurologist seems to have few answers to my questions, so I'm relying on this group to help me become healthier and a little more wise in what I can do for myself. I see a lot of positive people out there, and having this convenient connection is inspirational. I admit, I could not do this alone. Thank you, At 01:22 PM 3/12/00 -0500, you wrote: > > >Hi , > >Just wanted to welcome you to the group. Sounds like you have a great >attitude. > >I'm gaining weight thru inactivity. Use to just run a few extra miles to >burn off the desserts, but that's out for now. I'm trying to find the right >exercise for me that doesn't cause other issues. Many in this group >recommend it. > >Your hypotesis makes sense to me (the medically uneducated) that spastic >muscles would burn calories. Just not enough in my case. > >Good luck, > >Alan > > > > >------------------------------------------------------------------------ >PERFORM CPR ON YOUR APR! >Get a NextCard Visa, in 30 seconds! Get rates as low as >0.0% Intro or 9.9% Fixed APR and no hidden fees. >Apply NOW! >http://click./1/2121/5/_/532384/_/952886540/ >------------------------------------------------------------------------ > > > > Quote Link to comment Share on other sites More sharing options...
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