Old 12-10-2010, 07:46 AM #1 (permalink)
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Default Panicked over upper body ALS and grinding neck

I know you must be getting sick of reading my post, but this morning I got up at 4:30 went to the bathroom and I was moving the same way as the day before, when I got up for good around 6:30 my trunk, arms & hands went supernumb and I got short of breath.My BP & pulse was normal for me and so is my 02 level, after about 30min my breathing seems ok,the only thing I did yesterday was last night I put some sodas in the fridge, I would hate to think that doing something that simple would cause this much problem, I can still walk but as some of you know my problems are the trunk up,is it possible to lose upper body function before the loss of leg use, the other thing that really bothers me is the snapping, grinding and other sounds my neck makes, sometimes I feel worse after that happens.

Last edited by David : 12-11-2010 at 04:20 AM
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Old 12-10-2010, 11:04 AM #2 (permalink)
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Default Re: In a bit of a panic.

Allan,

To start at the end... I have the snapping and grinding noises in my neck. I'm convinced it's from weakness causing me to hold my head at an odd angle. My back, which rarely moves, seems stuck in place and also "cracks" when I bend. Bodies aren't made for staying in one position. I believe your problem is also from weakness leading to a lack of normal range of movement.

When you go to Hopkins in January, my hope is that you'll learn you do not have ALS. The problems you reported recently give me that impression. So... if that is the case, whether your trunk or legs fail first isn't meaningful (to me--may be very meaningful to your Neuro). If you should have ALS, you can still have upper body problems before any lower (leg) problems. Either way, it's frustrating and scary for you.

I hope as the day is progressing you're feeling better, Allan. I wish I could be more helpful. Oh, and I'd only take on one can of soda at a time for now--the weight of even a 6 pack could be too much. Crazy, but possible.
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