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lhagsjr

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I try to move on. I try to say OK, no ALS and Im OK but I just can't. Something is wrong. Why do I have fasiculations all over my body? Places include: side of feet, bottom of feet, side of my knees, calves, hamstring, back, biceps, triceps, shoulders, forearms,neck, and hands. Sometimes they are so violent I would characterize them as muscle jerks and not twitches. My arms/shoulders have definitely lost muscle mass but the DR. says no signs of atrophy. My tongue looks a little odd, but I have to admit I never really studied my tongue beforehand. Why arms BOTH my shoulders experiencing subluxation. It is horrible. I cannot move them would horrible crackling sounds. I just feel like my age(28) is hurting me. I honestly just feel like Im not being taken seriously. No I will admit one thing that is missing in the ALS puzzle, Im not weak. At least not that I can notice. My hands are strong. I have no problems walking. I even shot a little hoops yesterday and went swimming. This has been going on for 7 months which again i have been told the fact that the symptoms have going on for 7 months and i have no weakness is another good sign. I just know there is something wrong here. Im willing to accepts and of course be happy if its not ALS, but i need I a diagnosis of something. Why do I twitch all day? They are debilating. Why are my muscles/shoulders losing muscle mass? Why are my shoulders experiancing sublaxation? Does anyone have at least a small guess?
 
I know how completely, absolutely, without a doubt frustrated you are. I'm not going to candy coat your problems and say move on knowing that your fine because I am in your shoes and I know it doesn't work like that. I have many of the same problems, but feel weak with it. When I go to the doc I can squeeze his hand, push my leg against his arm, lift my leg against his hand.....so nothing is wrong! My shoulders feel like mush and if I roll over at night without thinking about it, I am in excruciating pain and ruined for the next couple of days due to muscle spasm. I fasciculate all over, now my face and chest more than ever. I'm 20 or so years older than you and am still not taken seriously. But, don't feel alone, there are a number of us on this forum that feel the same way. As hard as it is to accept, there is nothing you can do until your symptoms either get worse or, better yet, disappear. Luckily, my most recent neuros are checking a number of things including a muscle biopsy. I know how you feel, needing an answer. Not only does that take away your worries, but also helps you to understand, to know what will aggravate your symptoms and possibly what will help them.

Did you happen to have a bad viral illness before this started, the flu, anything? How about lyme, were you checked for that?

Since you will do better knowing what is wrong, be your own best advocate and have your docs check you for things it could be. Don't give up and do take the lack of weakness as a very, very, very positive part of your life! Good luck. :) Leslie
 
LTR is right on....

I've been in your shoes for 7 months too. Feel horrible, loosing muscle. relentless twitches, telling Dr.s what's wrong.. i'm 32...so....they figure, your chances are low and discount your complaints.

YOu need to get some meds, anti-depressants to help. I did and it's really helped out. Wellbutrin did it for me.

The only thing that will work now, is time....there is almost nothing you can do. In the meantime, have some more detailed test run, like complete lyme panels and other autoimmune disorders.

good luck

jamie
 
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