Does this sound like "ALS-esque" weakness?

[AndyDJX]

So I was late to work today, and instead of walking, I jogged quite a bit. The good news is I can still jog, the bad news is my calves get unfunctionally weak afterwards. I fail the classic "walk on your heels, now walk on your toes" strength test. I can walk on my toes, but not my heels. My foot often scrapes and catches things when I walk, usually with just the slightest raise in the ground.

However, this has happened before and I will be able to walk on my heels again within 24 hours, usually sooner. This also happens in my right hand; if I exert it it will become nonfunctioning, especially the pinkie finger. It will flop around on my keyboard and I will have to type with my other fingers. But then the strength will eventually return to it.

Does this sound like the early symptoms of ALS? (I also get fasciculations, have a ridge in my thenar muscle, get leg cramps and regularly wake up with my pinkie and ring fingers asleep in my hand. Non als-ish symptoms include eye problems and tingling.)

Thanks very much,
Andy

 

[ktmj]

Myesthenia Gravis comes to mind when you talk about strength going then returning. I am not sure if it has some of the sensory issues you talk about.

I'm certainly not saying it is MG - it is as difficult to narrow down as other neurological stuff - and I am not a doctor and don't play one on TV.:smile:

I am not a medical expert but have done way too much research since I have sx of my own. But I've learned to relax and let the docs figure it out. Right now I'm in the mode of being blessed by being able to do almost all the normal activities I've done. Don't even have any doc appts scheduled.

My sx are not like yours, but with that kind of weakness I think a good neuromuscular guy needs to see it and keep track of it. BTW it does not sound like ALS IMHO.

I wish you the best.

 

[BethU]

Andy ... eye problems are also frequent in Myasthenia Gravis, including drooping eyelids and double vision. However, as ktmi said, that's a hard one to diagnose, too. And there are many, many other mimics to both MG and ALS.

Eye problems are not characteristic of ALS, although I have them (double vision). These neuro conditions are wacky ... you can't really make a list of symptoms and say "these are ALS and nothing else," "these are MG and nothing else." Ultimately, we just have to depend on our neuros and their clinical observations and tests.

(However ... MG is treatable and often reversable, so if we got to vote, we'd all vote for MG over ALS.)


Speechless in LA

 

[AndyDJX]

Thank you for your responses. I have looked at MG before, it's definitely an avenue worth exploring, but I don't fit the "droopy eyelid" criteria or the double vision. My vision problems is related to flickering vision, where my eyes don't adjust well to dark/light and instead it looks like there's a strobe light going off.

I wonder if my eye problems and my muscle problems are related neurological conditions or if they are totally seperate. If they are seperate it means that I am more symptomatic of ALS with the addition of some non related eye problems. Also apparently MG and fasciculations are not related. I've been getting twitching all over my body for 2.5 years, and it's particularly bad in the areas that are showing muscle wasting and weakness.

I try to tell myself: I'm 27, I've been showing symptoms for 2.5 years and I can still function fine. But on the other hand, I know this stuff can progress slowly, I'm showing weakness, muscle wasting and fasciculations and I had hodgkin's disease which apparently has some type of correlation with ALS in that the frequency in hodgkins patients who have/get ALS is much higher. I need to look into this further with my doctors. The last ALS doc I saw basically said "you're fine, be on your way" which made me feel better at first, but in retrospect it was very brief and I wish I had explored some more things with her, at least received a follow up EMG or something. It seems pretty clear to me that what I have is not benign. It may not, is hopefully not, ALS but anything that is causing these issues cannot be just a benign, nameless condition.

One thing I have been experiencing these past few days is pain in the hand that is most affected. My pinkie and thumb (where there is muscle wasting and incessant, non stop muscle movement) feels sore. Not like muscle sore, but sort of cramped, fatigued and just generally in pain. The muscle itself doesn't hurt when I touch it, but my hand is hurting nonetheless. Is this common of ALS at all?

 

[BethU]

Andy ... that pain doesn't sound like ALS.

You've clearly got something going on. Hope it's fixable and hope you get answers soon. It's the waiting and worrying that drive us all up the wall.

Good luck.

 

[AndyDJX]

Shaking

New update to the "ALS-esque weakness?" question:

Today, I was carrying a very small, lightweight cardboard box full of a few different papers. I was carrying it under my right arm while I walked about 10 minutes. When I put the box, my arm was dramatically shaking whenever I tried to use it. I had to hold it unused by my side to get it to stop. Still now, if I can't hold a pen properly without my arm shaking very obviously to anyone looking.

Does that sound similar to ALS? What the heck is going on with me?

 

[worriedsick]

New update to the "ALS-esque weakness?" question:

Today, I was carrying a very small, lightweight cardboard box full of a few different papers. I was carrying it under my right arm while I walked about 10 minutes. When I put the box, my arm was dramatically shaking whenever I tried to use it. I had to hold it unused by my side to get it to stop. Still now, if I can't hold a pen properly without my arm shaking very obviously to anyone looking.

Does that sound similar to ALS? What the heck is going on with me?

^--- this is the exact problem I have been having. so far I have had a neuro (who i wasn't too impressed with) tell me i'm fine and my family doc tell me its just anxiety. I havn't noticed any huge decreases in strength (in the weightroom anyway I'm down maybe 10% from my previous max in everything after 3 months off). But yeah ive had that arm-shaking and hand-shaking after minimal but prolonged exertion. Also, i feel like my toes/feet want to cramp up constantly (and they did last night) and also like my pinkies are cramping and burning/cramp feelings on the insides and outsides of my palms/forearms.

I suppose you can take some solace in the fact that I have been cleared by a neuro while presending these symptoms. I'm still scared like you though.

 

[AndyDJX]

Yup, I've had the burning/cramp thing on my ulnar nerve as well (the nerve that runs along the pinkie/ring finger path) Does that ever fall asleep at night for you? I often wake up with my pinkie and ring finger totally asleep; tingling and unable to move for about 10-15 seconds. The hypothenar (muscle on outside of hand under pinkie) has been twitching for me non stop too. The twitches don't jerk, they just kind of pull in the muscle for a few seconds and release all day.

Have you ever gotten really weak after lifting beyond the shakiness? About a year ago I was playing baseball and my right pinkie was straight up unfunctional afterwards. It was super weak and I couldn't lift it, but the strength came back the next day.

 

[worriedsick]

Yup, I've had the burning/cramp thing on my ulnar nerve as well (the nerve that runs along the pinkie/ring finger path) Does that ever fall asleep at night for you? I often wake up with my pinkie and ring finger totally asleep; tingling and unable to move for about 10-15 seconds. The hypothenar (muscle on outside of hand under pinkie) has been twitching for me non stop too. The twitches don't jerk, they just kind of pull in the muscle for a few seconds and release all day.

Have you ever gotten really weak after lifting beyond the shakiness? About a year ago I was playing baseball and my right pinkie was straight up unfunctional afterwards. It was super weak and I couldn't lift it, but the strength came back the next day.

Yes, I wake up and feel numbness in ring/pinky fingers very often. My pinky feels non-functional after activities that aren't so strenuous. After driving my car for an hour or so the hypothenar muscle always aches in my left hand from gripping the wheel and in my right hand from gripping the shifter.

i have been trying to stretch it out and did some exercises with a rubber band that I found on the net, but all that did was produce excrutiating pain for 2 days afterwards. But yeah, pain in my pinky/ring finger on both hands happens a LOT and majorly sucks. If this is it, though, i'll just learn to live with it. I just can't kock the idea out of my head that there isn't something more sinister. >.<

PM me if you want to chat, I don't want to clutter the boards with my rantings when there are so many strong people out there in much more iminent danger.

 

[AndyDJX]

Agreed. I'll hit you up with a PM soon. I wonder if any of the folks on this board can let us know if these symptoms suggest ALS or another condition? The shaky muscles after minimal exertion, waking up with fingers or other extremities totally asleep?

 

[joelc]

I would have to say no. What you are describing I have not experienced, I would say they don't point to ALS.

 

[futuredoctor]

Hi Andy,
I know I'm late to the party for this conversation, but have you been tested for MG? Your symptoms sound very much like it. I have MG and it can manifest in a ton of different ways in everyone, so I wouldn't rule it out just because you don't have the droopy eyelids or double vision. Anyway, if you haven't been tested yet, its a really simple blood test that any doctor can order.

 

[Alyoop]

It's not ALS. Not sure what's going on, but the pinkie/ring finger thing is extremely common. You are pinching your ulnar nerve when you bend your arm while asleep. Happens to me every night. It's not a problem unless the symptoms continue during the day and cause weakness. The other symptoms could be many things, so get checked out by a neurologist, but be assured it sounds nothing likenALS

 

[trfogey]

This thread ended, for all practical purposes, about a year and a half ago, folks. If you want to know what the rest of Andy's story is, take a look at some of the other 150+ posts he has made here.

Bumping very old threads in this section of the forum is not particularly helpful to anyone. In most cases, the original poster's issues have long since been resolved and any material you might add to the old threads may confuse future readers more than it helps them.