Troublesome fasciculations

Jay R

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Hi all I’ll be brief in describing a situation which has been concerning for a few months. Hopefully I can receive some input which will give me greater clarity. Thank you in advance for your time.

me: 26 y/o male, I had an episode of widespread fairly intense fasciculations at the age of 13 but it went away after a few months.

The situation that has been bothering me began on January 1st. The arches of my feet began twitching while at rest, but it wasn’t in the way that I remembered it occurring as a child. These were localized to just my feet and the fascics were slow and minute. A week later I was getting them all over: arms legs, hands, shoulders, tongue, face, neck, stomache- everywhere. These were normal fasciculations that would fire or rapid fire then cease though. The feet ar were constantly twitching in this odd way while at rest. I began moving them constantly to relieve the discomfort.

I began having great anxiety about this, and it has been impacting my sleep. Additionally, my feet when I pointed them would cramp.

I started feeling mentally better as it went on because the feet fasciculations stopped for about 2 days, then began again. It’s somewhat cyclical. The cramping cleared up as well for a few weeks. So far no major issues with motor function in the feet I think although it’s hard to say, because I’m really thinking about my feet when I’m walking now.

A few days ago (2/20 ish) my hands became the focus of the fasciculations. Additionally there are slight pains in my hands, and it’s unclear if these are cramps. I’ve never had hand cramps so I’m unsure what they feel like. These pains are sharp and small and are usually relieved with massaging the hand. This feeling also occurs in my feet. As of tonight, my feet are cramping again when I point them and the fasciculations are back there too.

The last symptoms I will report is extremely sweaty feet and episodes of difficulty breathing with no associated panic or elevated heart rate, especially while I am in cars. Not sure what to make of that of course.

The doctor told me to wait and see essentially. Once again I began noticing the fascics on January 1st and now it is February 22nd. Any input you could add is helpful as this has caused great anxiety. I truly just want the twitching to stop so I can get on with my life. Thank you so much.
 

lgelb

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I would ask for a neurology referral to rule out pathology. Though a long shot, you could have something like acquired neuromytonia. The good news -- even if you do have that or some other movement disorder, that would be more treatable than ALS, which I don't think you have.

Best,
Laurie

 

Jay R

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Thank you for your swift reply! I’ve looked into acquired Neuromyotonia and it actually hits a lot of the things- I think I have been having myotonia, not cramps in my feet now that I know they’re different. Anyway it’s good to know there are other possibilities besides ALS. From my own experience as a child, I understand that widespread and bilateral fasciculations in the absence of clinical weakness is almost never the presentation of ALS, despite what Dr. Google says, but this doesn’t feel normal at this point so I wanted some input before I go to the doc. Thank you for taking the time I really appreciate it.

PS cute kitty
 

Jay R

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Hi, one quick question. Promise it’s the last before I see a neuro. For the foot cramps, they are bilateral, mostly painless and present more as the muscle momentarily locking or delaying release rather than a painful electrical short circuit as I have experienced with other cramps in the past. They only happen when I point my feet extremely for a few seconds while lying down. The same thing happens when I yawn. It feels like the muscle will lock in place for a second and then more slowly release rather than seizing. Is this a possible ALS symptom? Is this a cramp or something else? Any input would be fantastic!
 

Jay R

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update 3/2
I saw a neuro who seemed very unconcerned about the twitching. She did a strength exam and found no signs of clinical weakness. That was a big relief. She scheduled me for an EMG which I just completed today, am still awaiting results.

I just would like to hear any opinions relating to the presentation of one more symptom. I have noticed something strange in the right index finger. There is a feeling of tightness or stiffness. I am still able to use the finger, but sometimes it is more difficult to do things like hold chopsticks. This is the hand that experiences most of the twitches. This evening after I had opened a heavy window, the muscle between my right thumb and index started twitching. The stiff feeling comes and goes. Thoughts?

is this something to be concerned about? Thanks!
 

lgelb

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Our interpretation of what you might mean is way outweighed by your neuro exam and EMG. If there is a nerve or muscle issue, they saw it.

Twitching after effort is very common, and generally benign. It can also affect fine motor skills as you have seen. That does not make it any more sinister. Sleep, diet and hydration are often keys.
 

Jay R

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Thanks for your time and your input. It has been so very helpful. I wanted to give a small update and seek your opinion on some contrary info. I’ve taken your advice and tried to foster healthier habits/stop body monitoring so obsessively, and generally things improved! The finger issue went away basically. I’m a musician so I would know pretty quickly if there were a real progressive weakness with my fingers. That positive sign pushed me onward despite the twitching which stuck around.
I had been doing so well and now I’m frustrated because it feels like I’m back at square one and I’m exhausted. I’m almost at the end as I’m getting my EMG results soon, but a new bout of symptoms has been giving me such anxiety. This leads me to my main question:

I was just wondering about pain in ALS. I’ve heard that in some cases it can be associated with ALS in the early stages, but that goes against the mantra I’ve heard that sensory issues are counter-indicative, or at least unlinked to the disease. If you have an education opinion on these conflicting accounts id love to hear it. Is there a specific nature to the pain people report that differentiates it from pain due to other causes? Is it more of a medical anomaly than a less common but still statistically significant symptom? I’m just confused at this point.

I ask because in the last 2 weeks I’ve been developing pain in my hands. My hands frequently fasciculate (I can see them), often while the hand is in use. Not strenuous use, just normal everyday stuff. It’s typically a short burst that goes away immediately or in up to 10 seconds. My hands will also twinge every now and then, but it’s gotten progressively worse. Where it was once barely noticable, like someone slightly pinched the inside of my muscle, now it can be quite painful and stabbing. It comes on randomly in my hands, particularly the thanar area, but can be in my wrist, forearm, elbow, and rarely my legs and feet. Recently, it is exaggerated by use of the hand, such as holding my phone for a little while. When I play the violin sometimes the thenar area or my biceps will become sore while I’m playing which has never been an issue before. Oh, and my muscles have been aching constantly.

As I’m on the medical journey already, I’m prepared to see this through and accept the results when I get them. Until then, I’d be grateful if you could give me an opinion on what Ive described.
 

lgelb

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No, pain with effort is not a sign of ALS onset, especially as diffuse as you've described. As I mentioned, twitching can fatigue the muscles to where you might "feel" weaker without being weaker, but outright stabbing pain sounds like something else completely. While you await the EMG results (and if they are problematic, you will know soon), you might reconsider the surfaces where you play music, eat, sleep, watch screens, etc. and whether your position or support has changed in any way. Exercise or stretching that you might have increased, resumed or stopped could also play a role.
 

Jay R

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I think I mischaracterized, it’s not like the pain is really caused by effort such as in inflammation, just that sometimes the arm I’m leaning on while I’m watching tv will get this radiating electric feeling, or the hand I had just been using but usually it’s a pretty random event. Does this ring any bells?

I think that what you’ve described could explain the aches I’ve been feeling, but the pain developed after a period with few fasciculations. Sorry to bother you with a follow up. It’s just that the twitching was annoying, but this pain is actually unpleasant.
 

affected

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please read our official position, I hope it helps
 

lgelb

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Diffuse, sporadic, unpredictable, unpleasant pain, whether associated with effort or not, again, is not part of ALS onset. There are no bells to ring.
 

affected

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Try addressing your posture and don't lean on an arm for long periods to watch tv. Go for a walk, do some yoga, get your body moving. Nothing like ALS.
I don't know why my post with the link didn't seem to appear for quite a long time after I hit post too, strange.
 

Clearwater AL

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Jay R, I'd like to add how fortunate you are.

On Feb 26th you posted "Promise it’s the last before I see a neuro."

Seven days (March 3rd) later you posted you saw a Neuro and
apparently you also had an EMG performed.

"She scheduled me for an EMG which I just completed today, am
still awaiting results."

Many wait weeks or a month to get a Neuro appointment and
then a week or more before an EMG can be scheduled.
*We have countless stories of the wait "limbo"

You are very fortunate.

Ok, according to your post (March 3) and the EMG being done that day,
today is March 19th... I'm sure the results of the EMG have been
made available to you by now. Can you post the Summary/Conclusion
found at the very bottom of the report?
 

Jay R

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Hi everyone. I can’t thank you enough for your sober and educative replies. They often helped me when I was most nervous about this strange twitching, ghost finger, etc. I’m posting one last time for all of those who may have identified with my symptoms and want to know the outcome.

I’m very thankful to say that my EMG was clean! The neurologist assured me that none of the findings were consistent with an ALS diagnosis and all were within normal limits. My reflexes were fine, my strength is normal almost 3 months in. She believes while I do have fasciculations, she feels they likely have a systemic cause rather than a specifically neurological one due to being variably located and of waxing and waning intensity. They ran another blood test and this one showed irregular vitamin levels that could suggest parathyroid issues. If not, it’s likely just BFS. I don’t know. The pain in my hands especially is enough to be bothersome, and the fasciculations continue, sometimes triggered by slight movement even. But the EMG was clean, so I don’t have ALS. It’s time to stop worrying about this illness.

I’ll be making a donation, hoping for a cure.
 

Jay R

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And yes Clearwater I was very fortunate to get such a quick appointment for the EMG! Its probably because I live in a densely populated area with many competing clinics and offices. But seriously, even to be scheduled an EMG after one meeting with a neuro who wanted first to make sure I was satisfying any fears I may have.. I was like “this is too easy....” but thank you thank you to the PALS and families for being so kind as to reply to my post!!
 
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