Do you "feel" weak in als?

[lodinggggg]

I can still seemingly do everything normal enough, but I have this odd nervy weak feeling in my right leg that's constant and only seems to be getting worse with each passing day, this along with constant fasciculations and cramping for almost 3 months, this convinces me of als. Is this something that is experienced in als? or is the weakness an experience instead of a feeling? and if not, what is this feeling? Because right now it feels like my age is the only thing against an als diagnosis, and that isn't very reassuring for me...

[lodinggggg]

oh yeah I forgot to mention i'm also hyperreflexic.

[Fishmanpa]

READ THIS! (https://www.nomorepanic.co.uk/showthread.php?232384-ALS-and-why-you-DON-T-have-it!)

FMP

[kyllikki]

I am having the exact same experience as you right now, except with some other sensory issues like mild numbness/"fallen asleep" feelings in my right foot and calf/shin, as well as butt. I also have confirmed L5-S1 nerve compression from a disc, affecting the right side with some impingement to the left, too -- so frankly, I am very lucky to have at least a partial rational explanation of my experience. My right calf/shin twitches almost continuously. My left calf/shin twitches less often, but still pretty frequently. Sometimes my quads and butt twitch too, and sometimes other things (abdomen, shoulders, biceps, a finger, my face, even my inner ear muscles) will also twitch. I am also convinced my own tongue, bite, and voice sound and feel weird, but I am not sure that piece is objectively true, to be very honest. That's why HA for ALS is such a wormhole: your brain can convince you of an awful lot.

I am going to offer an unpopular opinion: I'm not really a fan of the sticky Fishman linked, because the truth is, ALS can present very differently in different people
Plus, the sticky was written by ALS caregivers and ALS sufferers -- and honestly, I've become convinced those folks aren't 100% reliable narrators. Plus, last, we know astonishingly little about ALS
We don't know how or why it starts, we don't know what causes it, we don't know how to detect it before it's taken hold -- and we don't know how to slow it down or reverse it. It's a true black box disease

But what I will say is this: It's rare if you're under 40! And there are other things beside ALS that can cause exactly the same things that you and I are experiencing, so anyone you see for medical advice is going to start with investigating those more common conditions

I personally strongly recommend working on your HA in parallel to seeking a medical explanation. It's not unreasonable to want to know why you don't feel yourself. It IS unreasonable to not accept logical answers that fit the facts, once you have them

All best wishes to you

[Fishmanpa]

I am going to offer an unpopular opinion: I'm not really a fan of the sticky Fishman linked, because the truth is, ALS can present very differently in different people
Plus, the sticky was written by ALS caregivers and ALS sufferers -- and honestly, I've become convinced those folks aren't 100% reliable narrators. Plus, last, we know astonishingly little about ALS

So people actually suffering with ALS and their caregivers are not a reliable source? Is that you "Q"?

FMP

[glassgirlw]

I am having the exact same experience as you right now, except with some other sensory issues like mild numbness/"fallen asleep" feelings in my right foot and calf/shin, as well as butt. I also have confirmed L5-S1 nerve compression from a disc, affecting the right side with some impingement to the left, too -- so frankly, I am very lucky to have at least a partial rational explanation of my experience. My right calf/shin twitches almost continuously. My left calf/shin twitches less often, but still pretty frequently. Sometimes my quads and butt twitch too, and sometimes other things (abdomen, shoulders, biceps, a finger, my face, even my inner ear muscles) will also twitch. I am also convinced my own tongue, bite, and voice sound and feel weird, but I am not sure that piece is objectively true, to be very honest. That's why HA for ALS is such a wormhole: your brain can convince you of an awful lot.

I am going to offer an unpopular opinion: I'm not really a fan of the sticky Fishman linked, because the truth is, ALS can present very differently in different people
Plus, the sticky was written by ALS caregivers and ALS sufferers -- and honestly, I've become convinced those folks aren't 100% reliable narrators. Plus, last, we know astonishingly little about ALS
We don't know how or why it starts, we don't know what causes it, we don't know how to detect it before it's taken hold -- and we don't know how to slow it down or reverse it. It's a true black box disease

But what I will say is this: It's rare if you're under 40! And there are other things beside ALS that can cause exactly the same things that you and I are experiencing, so anyone you see for medical advice is going to start with investigating those more common conditions

I personally strongly recommend working on your HA in parallel to seeking a medical explanation. It's not unreasonable to want to know why you don't feel yourself. It IS unreasonable to not accept logical answers that fit the facts, once you have them

All best wishes to you

you don't have a “partial rational explanation”, you literally have nerve compression due to a disc which will 100% cause the symptoms you’re experiencing. As for twitching - everyone twitches. Some notice it more than others, but it’s absolutely normal.

Reread your last line and try to make it your new mantra - “It IS unreasonable to not accept logical answers that fit the facts, once you have them”. This is great advice, and I know as well as anyone how difficult it can be to follow your own advice. But what you said is absolutely true. You have the logical answers, time to accept them.

[kyllikki]

FMP: People actually suffering with ALS and their caregivers are a reliable source of info about their own experience. That's not the same as being a reliable source of info about the disease itself

If it were, you'd be an oncologist... right?:winks:


As for the second sentence: I don't know what you're trying to say. It sound like you're accusing me of being a conspiracy theorist, which seems a bit much
Please explain ?

I'll clarify my point, if it helps: Only a doctor can tell you if you have ALS, using one of the ALS scoring criteria plus tests Reading stories on the internet and trying to compare yourself to them / asking non-medical experts you've never even met in person if you have a disease, is about as useful in understanding ALS as reading a novel
Less useful in fact, the novel might help someone escape their HA for a brief bit. Patient stories will usually only lead to projection

Glassgirlw, yes! I am super lucky that I have a possible explanation that means the only thing wrong with me, from the butt down, is a ruptured disc plus raging HA. From the butt up likely pure stress and HA!
At least, that's all the tests show / my neurologist thought at initial screen. I am literally closing out with them today -- intend to ask them if this really is the only explanation I need, and most crucially, what I do next about it
I am already also treating my HA, but clearly it's not enough if my body/mind is producing this much nonsense

But!! and this is my crucial point: I'm not a doctor, so I want to hear it from them instead of assuming one way or the other, because I know I am not a reliable narrator either
Maybe you trust your brain more than I do. If so, great, Everyone has different risk tolerance

Best of luck

[pulisa]

Can I ask what response this neurologist gave to you re looking for another explanation? What did he/she suggest to do next about? As you self-referred for another opinion, I take it you weren't satisfied with the assessment?

[kyllikki]

oh! I posted it on my other thread, I think. The neuro told me my EMG was abnormal and showed fasics in all muscles in the leg plus "nerve damage" and that "the muscle is struggling to connect to the nerve." Then they said to call immediately if anything got worse, for example if the issues spread. I said, well, my hand feels worse now too, does that count? And they said no, they think that the issue with my hand is very slight carpal tunnel and to buy and wear a brace overnight, which I have done, with the result that the type of problem I feel has moved but not disappeared.

Basically, I want a second opinion because I have a bunch things that are bothering me which could either be "one-off" problems or a larger problem, and I know I am not qualified to decide which, and this doctor only seemed interested in one of them, and wasn't at all explanatory, but instead just told me they wanted to monitor carefully. If that's the case, I'd rather be monitored by a neuromuscular team at an institution that is world-class for BOTH possible problems, than a neuro who is just a one person show. Hope this makes sense, I promise I am trying to be rational about all this, even though I DID freak out when they said it was a bad EMG!

[HopefulforBSF]

Did you ever get this checked out? What were the results?

[kyllikki]

I did. The neuromuscular specialist who is a member of an *** clinic told me my reflexes were "brisk but normal for a person of my age" (and importantly all the reflexes that you shouldn't have, I didn't have) and that she could not elicit any muscle weakness -- and she did a quick but thorough exam.
She also held and watched my limbs and didn't see or feel a single fasic, despite the fact that I can feel them and my PT does, too. I guess my muscles were just afraid to act up around the "expert" :shrug:
I asked about my hand specifically as I thought for sure I had atrophy in one specific muscle, and sometimes I can't get my BBQ lighter to go. She checked twice and said, my thumb is "slightly" weak but the fact that I can somewhat resist a push, and that the index finger isn't at all weak, is a good sign; then she said if anything that hand was bulkier in muscle overall, and she thought the difference in the musculature that I was noticing might be due to swelling around my CMC joint, which, now that she's pointed it out, acts and hurts in a way that certainly looks a heck of a lot like boring old arthritis. Then I asked about a bunch of pain I had in that wrist on dorsiflexion/loading and she said yeah, that sounds more like injury + nerve compression, come back if it's worse and she'll redo an NCS on that wrist for me.

Sidenote: I have since learned I have been trying to use a BBQ lighter wrong my entire life (you have to push *down* on the slidey bit before pushing it forward and squeezing the trigger, who knew?! :doh: )

Last, the specialist told me: Look, bodies twitch in response to stress. Any stress. Physical, mental, emotional, even things like being too hot, too cold, hungry, thirsty. Then she asked me "what were you afraid of when you came in today?" She made me name it. Then she told me I have no signs of that. None.

Meanwhile, my pain and numbness in my right leg have vanished with PT, and my speech/tongue/bite have stopped being weird and my middle ear myoclonus tinnitus magically disappeared after 1) I had a real (minor) household med emergency 2) got a miraculous night of good sleep 3) firmly told it off in the style of another poster in this forum who is also simply fed up with their twitching. Really! I literally told myself one night, "nope, I am not doing this tonight. I'm going to sleep."

Am I cured of my HA? No. My gait still feels really off and my right leg is stiff and *explodes* in fasics the instant the PT start stretching it (he insists this is normal and I am trying to trust him -- also, like, I DO have a degenerated disc, slight scoliosis, and a lot of metal and enough screws to shingle a roof in the opposite leg, so... it IS entirely possible that what I am noticing is simply that I have two very different legs, the more "reliable" of which has now been over-relied upon, developed a nerve root compression, and is annoyed.) Weirdly, though, even this waffles around: some days it's better, other days worse, depending on what my PT has done to me lately.

I am worrying less, but I think it would take a clean EMG for me to be able to evict this thing from my mind completely. I have a rule about my HA, though: I only get to worry about things in 6mo increments. And now that I have been cleared by an *** specialist, it's time to remove this from the list for 6mo.

Wishing you all the best. One major piece of advice: STOP TESTING. Immediately! You *will* only make it worse, especially if you, like so many of us here, start doing weird stuff like trying to pour from a gallon of milk with your index finger alone or jack up a Land Rover with your tongue or whatever it is the internet says will "prove" you're not "weak." And then you *will* hurt yourself and you'll be unable to use a doorknob the next day and your brain will go *splat* with anxiety. So, really, just don't test anything!!!

& keep us posted, it'll help the next poor twitcher...