Old 08-10-2008, 11:05 PM #1 (permalink)
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Default I just dont understand...

how i have some of the key symptoms of this horrendous disease(atophy,twitching) but my tests(3 EMGs/biopsy) dont show it. My body, in particular my muscles, have atrophied id say 50% is a good number. Im almost 2 yeras into symptoms. My life would be perfect if I wasnt suffering from this. Its so sad, I worked so hard to put my self in this position at 29, and I cant celebrate it. I cant even go swimming because i refuse to take my short off with my upper body looking this way. I really wish i would just pass away in my sleep. I feel like Im in hell..
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Old 08-11-2008, 12:25 AM #2 (permalink)
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Lou, I know you're sick of hearing this, but if you have 50% muscle atrophy without weakness . . . then you don't have ALS. It's as simple as that. Hell, if you have any muscle atrophy without weakness, you don't have ALS.

I remember you putting in a previous post (some time ago) that I told you that you are fine and that it kind of pissed you off that I said that to you. I never said you are fine . . . I said you don't have ALS. Your exams have been from very well respected ALS specialist . . . and you have gotten the all clear . . . so maybe ALS isn't the ailment you have. I think maybe you should find another specialist to re-evaluate your situation . . . maybe a rheumatologist for example.

I truly wish you the best, Lou. I think you're a good guy and it saddens me to think that you wish to die. Maybe it's your emotions getting the best of you. I'm sure you are deeply loved and those that do love you, I'm sure wish that you remain on this planet . . . alive and ticking. Hang in there my friend.


P.S. You posted a question asking about reflexes and I answered that for you. May I ask why you posted it?
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Old 08-11-2008, 07:25 AM #3 (permalink)
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Lou- I started having symptoms around the same time as you. For a minute there I thought my own symptoms were ramping up as I now have trouble breathing. I run out of breath in the middle of a sentence, stuff like that. And my GP says I am definitely weaker.

But there are other diseases than ALS to explain these things! Some of them, like ALS, will not show up on tests. I now think I know what the ALS doc meant when he said I should prepare myself for getting worse. I am worse. But I am also better, since I probably have something auto-immune. I am not dying, Lou.

You and I will probably live a long life. We might have to amend some of our lifestyle but so be it.
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Old 08-11-2008, 08:13 AM #4 (permalink)
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Default Lou

Have you ever been injured? I know that's a strange question but my son who is 22 now got ran over by a car when he was 17 and now his left side, shoulder, back,arm are all atrophied. He is still a handsome man and takes his shirt off all the time . He is quit the ladies man and the women do not seem to mind his right side being larger. At first he was really depressed and it took him along time to recover but he enjoys life probably more than any of my 7. Lou, I think you should see someone about your depression and that is exactly what it is if you want to go to sleep and never wake up. I have lost my father to suicide and it is a terrible thing to do to someone and I feel you should take those thoughts more serious than your atrophy. Lots of luck and please try to relax and enjoy life. None of us really know how we are going to go, we thought my son was going to go by being ran over by a car and he is still here and very happy to be. Stay well.
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Old 08-11-2008, 09:59 AM #5 (permalink)
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My best advice would be to concentrate on treating your symptoms and not worrying about what causes them. You don't need a diagnosis to address what is making you feel bad. Your doctor must have noted the symptoms you do have and offered some sort of treatment. That significant amount of atrophy would be treated with some sort of physical therapy or exercise program. Pain with ibuprofen, muscle relaxants. I would bet that you have also been perscribed anti-depressants/anxiety meds.

Stop worrying about what is wrong...concentrate on the "perfect" parts and do as your doctor says. Even if the worst possible scenario turns out to be the case, you need to live your life to the fullest. Is knowing going to make a significant difference?

Celebrate being 29....I would....
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Old 08-11-2008, 12:51 PM #6 (permalink)
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I agree, you have to live your life. I can understand how you feel. It is hard to make adjustments. I would bet no one is looking at your body half is much as you are, one thing I have learned is, no one really looks or cares half much as you think they do. I lost so much wieght in the begining that it alarmed me. (10 in one week) so I went on a mission to gain it back. ( I am small to start with) Oh, did I gain it back, all in my stomach! nothing came back in my thighs or arms or even face-just stomach. It is hard to take my kids to the pool and be in a suit with "new" body! I hate it, but as soon as I feel bad for myself (vain/ego) about what this "somthing" is doing to my body----I am thankful that I CAN take my kids to the pool still. Try to be thankful for what you can do. It is hard when it all changes, I get it. I cant even look at a tennis court without wanting to cry, then I am thankful that I am walking and driving....it could be worse. Heck, maybe it will get worse and when it does we need to know we enjoyed the days we had. You could get hit by a car and die before your life changes with a disease. One of girlfriends was killed on her way to school. That year I lost 6 friends. Suicide, car accidents. No one see's these things coming. I have my days where I break down and cry but then I pull myself out of it and go do somthing fun. (even though it is not as active as the old days).

Take care Lou,

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Old 08-13-2008, 04:40 PM #7 (permalink)
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Lou -
To be in such an incredibly dark place as to wish you would die is horrible. I truly feel for you. And . . .you should really talk to a professional about those thoughts. Either your doctor, or a counselor. What if months / years from now you discover you really DON'T have ALS? Think of the joy you would miss, and all of the experiences you could have in between? It's easier said than done I know, but just think about it. On the topic of not taking your shirt or shorts off: Keep this mantra in mind: "WHO CARES?" Swim, play beach volleyball, just lay in the sun if you want to - and without your clothes too! On a lighter side, just think of alllllll the people out there with "imperfect" bodies, who put on their bathing suits, or take their shirts off, or God-forbid put on the all unforgiving Speedo and just dive in because they want to! Live your life, with or without clothing, but don't let what others may or may not think of you stop you from doing what you want to. (Sharing TMI coming up.....) Take me for example. I frankly am fat. Yep. And not only that I have a (I think) gross skin condition on the backs of my legs and upper arms, and when I was younger, even though I LOVE swimming I would only do it alone. But now I'm older, the WHO CARES has really set-in, and most of all my baby loves the water. So Mommy puts on that bathing suit and we go to the public pool anyway, and I'm having so much fun I could not care less who is looking or not looking or what they think of me. Okay, that's all I have to say about that. I hope you're having a better day today than yesterday. Take care!

April -
Just a moment of levity for you . . . . my teenage cousin just used a "new" term from the kids these days:
"Food Baby" Meaning? Women with fat stomachs who aren't pregnant! UGH! (If that's the case I'm having food-triplets any day now! LOL)
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Old 08-13-2008, 06:47 PM #8 (permalink)
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suzann

I must be old, I dont even understand what that means! I have always thought of myself as kind of young at heart, Ya know~36 is the new 26? But I dont get that, I have heard muffin top or fump but not food baby

take care

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