Three months of twitching and now weird hand symptoms

DrinkWater37

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Hi,

My twitching started around late December 2020/Early January 2021 in my thumb and forefinger. After that it quickly spread all over my body. It occurs both under the skin and with "clonus" where an entire finger or limb will jerk. When an entire limb jerks, I usually feel an electric shock just before it happens. It is often triggered by putting pressure on the area. For example if I am putting pressure on my elbow, the finger of that arm may start twitching.

I read the forum and was reassured that ALS does not start with twitching alone. During this period (late February) I also saw a neurologist who did a clinical exam and EMG and told me flat out "this is not ALS." So that reassured me.

However since then new symptoms have started appearing. I now have this thing where if I open my hand slowly, my pinky and ring finger don't open up fully right away. Instead they seem to "catch" and then suddenly "pop" up at the base of the fingers. Also if I close my hand slowly, these fingers at a certain angle suddenly "collapse" into my palm. These are worse during the morning. It seems like mild spasticity or trigger finger? Also my fingers feel vaguely heavy like there is a sticky webbing around them when I open and close my hand. I also seem to have mild ataxia. I can also hear my knee joints popping when I am just walking. I don't think I have arthritis as I'm only 37 and I don't do any sort of repetitive gripping at work, so I don't see where these symptoms are coming from? It seems that spasticity, finger stiffness or trigger finger can be one of the early ALS symptoms which is what worries me.
 

ShiftKicker

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Hi there-

You mention a few things- trigger finger, clonus, spasticity, ataxia- that can only be properly assessed for and diagnosed by a doctor and it's not clear this has been done. The place you need to start again with is a doctor and ask them for an assessment and move forward from there.

While you have been cleared of ALS by a neurologist who conducted an EMG, it's clear your health is very concerning to you. This forum is not a good place to start looking for answers to your questions though- as it focuses on supporting those with ALS and their caregivers.

Please take care and best of luck finding out what is going on.
 

lgelb

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I would see a rheumatologist to rule out rheumatoid arthritis and related disorders that 37 is by no means too young for. But I agree that ALS is not in this picture.

Best,
Laurie
 

DrinkWater37

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Thanks for the responses, ShiftKicker and Laurie. I have taken your advice and scheduled an appointment with a doctor.
 

DrinkWater37

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Hi, I saw my PCP who ran a bunch of tests but he did not find anything. Nonetheless I felt better until today.

Today I was running with a new pair of shoes that are heavier than my old pair, and afterwards I noticed my left foot was slapping on the ground. When I got home I took off my shoes and I could not lift the front of my left foot towards me at all. There was no pins and needles sensation, no feeling at all but I could not lift the foot. It returned to normal after a second but I wonder if this could be the beginning of foot drop? When your foot drop started, was it worse after running or walking? In the beginning did it get better temporarily and then worsen later on?
 

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The good news is that ALS does not get better. You really should go back to your PCP if you have any concerns as it needs to be clinically examined to give any opinion on what is going on.
 

lgelb

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You could also try to follow up with the neurologist who has a baseline for your foot. And I still think a rheumatologist might be worthwhile. But no, this doesn't sound like ALS.
 

DrinkWater37

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Thanks. I have another EMG scheduled in six weeks, and in the meantime, I will see a rheumatologist. My PCP suggested the latter as well.
 

TippiLeigh

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I’ve been given a probable diagnosis of PLS (because I had a clean EMG), but my neurologists have not ruled out upper motor neuron predominant ALS. (Because they said even though I had a clean EMG now, I might not have a clean one later.) Your symptoms are very similar to what I experienced, including at the early stages where my foot drop and other symptoms would improve and decline from day to day. I also get an electrical shock feeling in certain areas before I have failure or twitching in that area. The entire year before I realized there was something neurological going on, I had general fatigue for about a year and had horrible exercise intolerance. (Running, jumping, etc. were all worse. I just kept blaming it on getting older.) All I can say, is keep advocating for yourself. It’s completely possible you have nothing going on, or at the very least, nothing too serious, but only a physician can tell you that. If it is a neurological issue, it can take a very long time to get to the bottom of it. While going through my journey, in addition to seeing many neurologists, I also saw a rheumatologist and other specialists. All of those were able to rule out everything in their specialties because they have testing for most of their issues they cover....but not in neurology. That’s why it takes so long.
 

rmt

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Drinkwater37, it could also be that your new running shoes are pressing on a nerve or causing your stride to be slightly different somehow, leading to the "foot drop" issue. Anytime something weird happens while doing something new or with new equipment, my first thought would be that the new thing was the cause. I'm sure there are times when that isn't the case, but it's something to keep in mind.
 

lgelb

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Tippi, since you say you've seen multiple neurologists, you've had multiple neurological exams and therefore you have indeed been "tested," even apart from NCS and EMGs.

From the moment a neuro walks into an exam room, as much as any other specialty, you're being observed and tested. From strength to eye movement, balance, coordination, sensation, and many other aspects, there are objective measures being applied to your situation. It is very misleading to characterize neurology as lacking in testing as compared with other specialties. And we haven't even gotten to testing that helps rule out other conditions, e.g. EEGs, MRIs, CTs, and specific "signs" that can be sought.

In re PLS, "pure" cases are rare because provisional PLS often "converts" to UMND. Therefore, when there is a provisional diagnosis of PLS, watchful waiting and sometimes repeat EMGs are needed before ruling out ALS.

Nonetheless, as we have discussed several times previously, our accuracy in telling people that they do not have any MND ("specificity," in the science world) is high, because we do not opine when the question is more equivocal and clinical testing/exams will have to tell the tale.

Please refrain from projecting your own uncertainties onto the worried. If/as they show up here in good faith, we owe them objective feedback based on their individual context. If you cannot provide that, it is best not to comment.

Best,
Laurie
 
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TippiLeigh

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So PALS aren’t allowed to give their own experiences on this thread? That’s what they’re coming here to ask about. If I want to share my own story, what’s the problem with that? Nothing I said was inaccurate. So you’re saying non-physicians can come on here and tell people they don’t have ALS even though they have no official medical degrees but I can’t share how someone else’s symptoms are very similar to mine? I’ve broken no rules that I can see.
 

Bestfriends14

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PALS=Person with ALS. Everyone is allowed to give objective advice, but when it borders on playing devils advocate with every single post, and not an objective view, that can cause further anxiety, unnecessarily, to the 99% of worriers who do not have ALS. This can even exacerbate their anxious feelings, which is not the point of this forum, and not fair to an individual's already sky high anxiety.

I rarely bring in how my husband's symptoms started because they have little to do with the poster asking questions. Rather, I give an opinion based on the overall constellation of symptoms, which 99% of the time, have little to do with ALS when looking looking at the forest through the trees.
 
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EricInLA

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I think what Tippi was saying is that there is not an "on/off" test for neurological diseases, like spotting cancer on a PET scan or other diseases from blood work. Neurological, or at least neuromuscular, is more complicated and generally requires a collection of evidence of over time. And the reality is that those of us afflicted with this miserable disease can take very different paths to our diagnoses, and then have divergent experiences even after. For instance, I would take issue with the advice above that "ALS does not get better". In my case, I had leg pain and fatigue which did subside for many months due to, as I understand it from my neurologists, reinnervation wherein the motor neurons that are still working branch out to the muscles that have been disconnected (if I'm explaining it right). So I think we have to be careful about absolutes with this disease. I do think DrinkWater can take much comfort from the fact that his/her neurologist ruled out ALS after doing a clinical exam and an EMG. Statistically that makes ALS very unlikely (I would have loved hearing that from my doctors.) But I think Tippi's experience is relevant as is those of others who have been diagnosed with motor neuron disease. I agree with Tippi that's what DIHALS come here for.
 
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