Old 11-08-2018, 02:42 PM #1 (permalink)
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Default Is it ALS?

Iíve read the sticky note that said that this is not a progressive sensory disease. I felt immediate calm when I read that. But then personal experiences of people with ALS seem in line with what I am experiencing.

For about 10 days I have experienced sudden muscle weakness. I am still a 5/5 on strength and have passed all reflex tests. I am experiencing no twitching, no clinical weakness like a dropped foot. It feels like weights are attached to my forearms/hands and legs. I havenít lost coordination though itís not without thought. I feel like I could.

Today, the words als and ms testing were mentioned. I donít seem to fit MS because I have no pain. No tingling, no spasms, no cramping, no double vision. I can run, I can swallow. It just feels like maybe Iíll fall down or like my hands and wrists are weak, though they function. It can feel like Iím over shooting a motion or it is not articulate. Or maybe like Iíll trip. Maybe I donít hold things as steady or I feel like I have to tell myself to walk.

It makes me believe it is not ALS because it is happening in both arms and legs and onset has been about 10 days now, progressively getting worse though I donít lose feeling of function. Theyíre just weighted. But they are still sending me to a neurologist which btw is going to take a month plus. It seems like everyone has had tremors or lost the use of a limb or specific muscle. Could this be als with my symptoms? Or should I expect function loss after the weighted feeling fades or intensifies? Does that happen? I think Iím confused when I hear about progressive weakness from patients but then I really want to hear itís like the sticky note says.... like no weakness, no heavyness? Anyway. Itís giving me anxiety and Iím usually pretty even keel. Would just like to know if anyone else experienced weighted limbs (not just one limb) before either losing function or being diagnosed.

I have a young son and would like to be as prepared as possible with how this is progressing. Thanks you!
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Old 11-08-2018, 03:10 PM #2 (permalink)
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Default Re: Is it ALS?

All four limbs feeling heavy within a ten-day period sounds very unlike ALS. What you describe seems more like a systemic disease than a neurological one. I would follow up with your PCP while you are waiting for the neurology appointment and make sure all possibilities have been addressed.

Best,
Laurie
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Old 11-08-2018, 03:40 PM #3 (permalink)
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Default Re: Is it ALS?

Yes, I agree - or I want to anyway. I would say myesthenia Gravis except looking back it began in my legs not in my face. Thank you for your swift response.
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Old 11-09-2018, 08:19 PM #4 (permalink)
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Default Re: Is it ALS?

Iíd love your input on one more symptom. Weakness of the right hand and heaviness of the right leg. Would you still say it unlikely ALS if I can still grip and carry but it is weaker than my left hand? It feels almost more like my wrist is the issue but my grip is decreased. Would it only be ALS, as you noted, if I suddenly could not hold anything?
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Old 11-09-2018, 10:20 PM #5 (permalink)
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Default Re: Is it ALS?

Maybe this will help:

Joe has ALS but doesn't know it yet. His fingers don't button a shirt anymore, because one or two of the many muscles in his right hand are no longer getting signals from the brain.

Next month, maybe in 6 months, his hand is pretty useless. In the second year, his arm is lost, and the foot is tripping now.

That's what it means to be progressive.

In real life, here's the fastest moving progression I've ever heard of:

In a bookstore, Kristine bent down to look at the lower shelf, and fell over to the floor. One of the muscles in her right foot was not getting its orders from the brain. Being really smart, she went directly to get an EMG, and was diagnosed with ALS.

A month later, she needed a cane. A month after that, a rollator. In the third month, she needed to be carried to her wheelchair, and her hands were beginning to get weak. Throughout the whole time, she never felt weak, never felt heavy or strange or funny or tingling. The muscle just didn't work.

That's the fastest progression I've ever heard of. Note that it's in a serial order, not all over at once.

Now, regarding you. Your super-fast timing must be some other problem, not ALS. And you talked about feeling heavy pretty much all over. But ALS strikes without feeling it, and not all over at once. Also, I get the sense that some days are better than others. But in ALS, once a nerve is shot, it will never come back. So, no, I don't see any reason to think about ALS.
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