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Kcombs

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Nov 15, 2011
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Learn about ALS
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Indiana
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South bend
Hello everyone just wanted to start off by saying how impressed I am with the level of knowledge and caring on this site. I have been serching for answers for a year and have been serching here. It has been over one year of Dr's and no answer to my muscle wasting. All the wasting/atrophy I have had has all been symetrical throughout my body. I'm 40 yrs old and have high cholesterol so and have been on Lipitor for 7 yrs. My Dr took me off this drug to see if this was the problem but symtoms have continued. I work out 4-5 times a week and I am very in tune with my body and I can see the muscle wasting away right in front of me. The wasting first was noticed in my calves, hands, and forearms in Oct of 2010. Went to local nero in Jan 2011 passed all the manual test and he dismised any nerve problem. Muscle contiued to waste and now noticed in hips, trunk and butt. Still concerned so I went to nero at Cleveland Clinic in March. Again passed all the manual testing, but I can still see the muscles wasting. Ran a series of blood test as well that came back fine, can't find a problem. Summer came and now wasting in chest, quads, face, neck and shoulders. Went back to Cleveland Clinic in June 2011, had a EMG/NCV passed 12/12 on all but one which was 11/12. So Dr dismised as all clear. It's now November and my wife can see the loss of muscle throughout my body. My strength is good and I can workout fine with the same weight I have used for the last 5 yrs. I have lost 2 inches off my arms, 3-4 inches of my legs, chest and shoulders. My muscles are not as hard and when I flex they dont get solid like they used to. Can ALS work like this? Just pure atrophy first with no other signs of nerve damage? I really am at a loss and can't seem to get anywhere with the Doctors/Specialist, and I am really frustrated. I can see somethings wrong and can't get an answer. Thanks in advance for any advice you can share.
 
Can ALS work like this? Just pure atrophy first with no other signs of nerve damage?

No. In ALS, the nerve damage causes denervation of the muscle fibers, which leads to the muscle atrophy. You would definitely notice distinct weakness and loss of functionality before you saw any atrophy if your condition was the result of ALS.

If the doctors tell that there is nothing neurologically wrong with you and you have no loss of strength or function, why on earth would you be worried about ALS? Do you want to have it?
 
Thank you for your reply. I just have read that atrophy is one of the main symptoms of Als. If not ALS and not another motor neuron disorder u have discarded, what would cause the atrophy? Had muscle biopsy as well and it was negative. I was under the impression that muscles atrophied because the nerve supply was lost? Sorry if I was misinformed and of course I don't want ALS just trying to find answers.
 
You don't mention weight loss, so are you losing weight? Given that your supposed muscle atrophy (which you don't have . . . read on) is occuring, you should be seeing weight loss. On top of that, if you can still use the same amount of weight in the gym, then you don't have muscle atrophy. That is why your EMG showed nothing wrong, because there is nothing wrong with the nerves controlling your muscles and there is nothing wrong with your muscles. Therefore, again, the atrophy you are seeing is not muscle atrophy. No weakness, clean EMG . . . NO ALS.
 
Once I started noticing "atrophy" or muscle loss in my mind or what I saw I quit doing cardio. I weighed 220 at the time and was pretty lean. Now i am at 225 but not near at lean/cut as I was. Wright I am glad u have an opinion view because u have a fitness background and know when your body changed like I feel mine is. I can see and feel my muscles are not as big and as formed as they were just a year ago. The shear size has diminished significantly in the last year. If I can lift the same why would they atrophy like this? I sorry if I am wasting people's time I am just looking for support and or direction. My wife can see and feel the difference as well. Thanks again.
 
Why not see a nutitionist and personal trainer? You may need additonal calories and a different workout plan for yourself. Everything you have described does not fit the ALS profile at all. That is what you can be thankful for at Thanksgiving!
 
I have thought about that and was planning on it. I have not changed my diet at all the past few years. The muscles are just so much smaller and thinner looking throughout my whole body the past 12 months. I know from the form that this is not typical ALS symptoms but it also been stated that it affects everyone different when it presents itself. There are some minor things I did mention like my handwriting is sloppy and I get cramps in my feet and hands. I wish your happy Thanksgiving as well.
 
No. In ALS, the nerve damage causes denervation of the muscle fibers, which leads to the muscle atrophy. You would definitely notice distinct weakness and loss of functionality before you saw any atrophy if your condition was the result of ALS.

If the doctors tell that there is nothing neurologically wrong with you and you have no loss of strength or function, why on earth would you be worried about ALS? Do you want to have it?

I hate to sound snarky, because I am not. And I think you do have a much more in depth knowledge of ALS than I do, by a long shot. I have been searching old threads on here and reading the current ones trying to learn all I can, and almost all of your replies have a spirit of meanness to them. People just come here asking this because they are scared, yes scared of something you have. I am sorry you have it, and I swear if there was something I could do to take it away, I would be there with you in a heartbeat, I will pray for you tonight, and everyone else stricken with this horrible disease. I just ask you try to remember that it's okay to be afraid and seek help, just as you have done, so these people do.
 
Jimmy- please dont come onto this forum and accuse our member of being mean. You do not know a single one of us, and quite frankly, Im tired of seeing my friends being put down by people who know nothing about them. I could go on to explain how it is that Trfogey ISNT mean, but I doubt it would do any good.
Just please stop.
Thank you.
 
I am going to tell anyone who thinks someone is being snarky one thing: If you could imagine how many hundred's of scared people who come on this site sure that they have ALS or MND and Do not, well we would all be a rich bunch if it were dollars.
We are saving you a lot of heartache and worry, and I will tell you this for sure, as long as I have been here, and that is a long while, I have never ever seen us get it wrong. Now we are not your Doctor, nor trying to diagnosed. you, but we do have history and research and knowledge on our side, so take that for what is worth.
 
Yes because when someone scared and looking for answers gets a reply to the likes of "use your head for something other than a hat rack" and "why on earth are you worried about having ALS? Do you want to have it?" it doesn't come across as mean spirited at all.
 
Some people really do need a reality check. Tough talk only comes out when people just won't listen.

AL.
 
So I take it then that you think everyone should be coddled and such?
Do you realize that this isnt everyone's style?
Maybe Trfogey isnt the person to go to if youre looking for that,
but i promise you that he gives straight answers and doesnt pussyfoot around anything.
he calls it as he sees it. just like you think youre doing with him right now.
mean? no. realistic? yes.
dont like it? dont read it.
 
Some people really do need a reality check. Tough talk only comes out when people just won't listen.

AL.
I don't believe the person that made this topic gave any indications that they weren't listening, and that was the first reply regardless. It's not as though the OP was pretending to be out in some fantasy world that forced a reality check, was just a very kind and honest post met with a mean reply.
 
So I take it then that you think everyone should be coddled and such?
Do you realize that this isnt everyone's style?
Maybe Trfogey isnt the person to go to if youre looking for that,
but i promise you that he gives straight answers and doesnt pussyfoot around anything.
he calls it as he sees it. just like you think youre doing with him right now.
mean? no. realistic? yes.
dont like it? dont read it.
no, and no one went directly to him either. There was nothing to pussyfoot around there. What is realistic about asking someone if they want ALS? Like they're really hoping they have it?
 
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