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Patty, I asked Lori to re post hers as it had been closed. I'm bumping this up, hoping others will do the same until we can get it into a stickie.
 
If only they'd read it.
 
Bump it up again, maybe some one will read but the reality is what they have is perceived weakness and what we have is true weakness and no amount of bumping will change either reality be it perceived or true.
 
Well, perhaps someone will benefit even if many won't;

I get days when I feel really weak and can't walk at all but it's because the bugs are being obnoxious and my oxygen levels are iffy.

I get days when unwinding a skein of wool causes pain in my arms sufficient to make me stop doing it, but it's because the bugs are being obnoxious and my oxygen levels are iffy.

I get days when eating is a chore and cooking is impossible but it's because the bugs are being obnoxious and my oxygen levels are iffy.

And as you know, I don't have ALS!
 
My doctors refer to my hand weakness as moderate. I'd guess 3 or 4 out of five. It's only slowly dawning on me how it's evolved. Perceived weakness is not the same as loss of function. I haven't lost real function as of yet, I can still open bottles if I'm focussed. Handling knives is a bit more iffy if it's more than a quick chop chop.

I described to my GP how my gait has changed. He'd noticed it too. He said foot drop. I disagreed. I really don't think that's what's happening.

I don't have ALS. I think my weakness is perceived. My doctors disagree.
 
Lol, I think I'd go with the doc as to what is weak and what is foot drop myself. I didn't need the doc to tell me I had strength of 1/5 in my hand. Already knew it. I couldn't open a bottle with my left hand if my life depended on it.

But, there are things other than ALS that cause weakness and foot drop both, thankfully for you.

One of the first thi gs the ALS neuro noticed was my spastic gait. It's obvious, though I hadn't realized it.

I sure won't ever need to wonder if something is really weak or not ever again, though.
 
Well, I have to admit that I frequently have doubts about whatever is going on to the extent sometimes wondering if I'm somehow faking it. I've had five neurologists, neuromuscular specialists and neurophysiologists, two rheumatologists and my GP all examine and confirm the atrophy and weakness, let alone lack of reflexes and cramping in some locations. But all pretty much agree that it's not neurological in origin.

I know something's wrong, but I feel like such an idiot both when I'm getting by OK as well as when the lack of coordination disables me visibly in small ways. It drives me absolutely nuts.
 
Well, I have to admit that I frequently have doubts about whatever is going on to the extent sometimes wondering if I'm somehow faking it. I've had five neurologists, neuromuscular specialists and neurophysiologists, two rheumatologists and my GP all examine and confirm the atrophy and weakness, let alone lack of reflexes and cramping in some locations. But all pretty much agree that it's not neurological in origin.

I know something's wrong, but I feel like such an idiot both when I'm getting by OK as well as when the lack of coordination disables me visibly in small ways. It drives me absolutely nuts.

It's pretty hard to fake atrophy, hon. And lack of reflexes.the good news seems to be they've decided it's not ALS...so now you just need to find out what it is. So,e kind of myopathy?
 
How did you get to page 2.....bumping up!
 
Bump for newbies
 
Back to page ome so it's seen by new folks
 
your bumping efforts have led to me reading this. your attempts are not in vain. The problem may be that we with percieved weakness (assuming that is me) beleive that the things we feel now are just a slow progression of als. thats what I fear i guess.
 
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