Logic says I’m likely fine, some fasciculations and stiffness make me wonder

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Tauru_Verte

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I’m a 37 year old male and I’ve been a guest here for some time and became a member about a week ago. ALS has been something I’ve been interested in for some time and I’m a monthly donor to the ALS Association’s research fund. I am no neurologist nor am I (hopefully) a PALS or a CALS, but because of my interest and concern about the topic, I’m a bit more informed than a lot of the posters in this forum. I’m well aware of the stats: 2-3 diagnoses per 100,000 and a lifetime chance that could be somewhere between 1 in 300 or 1 in 1000 (in other words, rare). I also know clinical weakness is the hallmark of the disease. Nevertheless, I find myself now in this forum wondering about some experiences I’m having and turning to people who know more than I do and have the lived experience in one form or another.

I have been experiencing fasiculations for several months—since about late October/early November. Calves, thighs/quads, and my glutes (and rarely abdomen). These don’t happen all the time but they’ve been an irritating presence and are certainly a daily or almost daily fixture—which was not the case prior to a few months ago (or at least not to this extent, everybody gets a twitch now and then).

I think these fasciculations may be a little less frequent than they were and actually their occurrence may vary with some days being worse than others. What got me concerned was the appearance of rapid twitching near my left shoulder last month—previously unaffected even when I had those intermittent other twitches. Thankfully this shoulder twitch is no longer as frequent as it was, but it does still occur occasionally. I know based on just 2 or 3 studies and some anecdotal evidence that fasciculations can sometimes be a presenting symptom, but this is generally not the case and that they can easily be and usually are benign or anxiety-induced or perhaps another condition (fibromyalgia, BFS, occasionally MS, etc.).

My calves sometimes have a tight feel to them—not quite a cramp, but something. It seems to be primarily the right calf and sometimes I think I can feel something there when I touch it—maybe it’s a muscle knot, although no stretching or hydration seem to make it go away. Maybe it’s all in my head. But I also know that the thigh and the hip of that same right leg sometimes feel a bit sore and stiff.

I remember Dr. Richard Olney, an ALS researcher who developed ALS himself, noticed “stiffness” in his shoulders and began to suspect he might have it. I believe he may have had some mild coordination issues as well, but I’m not quite clear. Yet at the beginning he didn’t present clinical weakness at first (and his diagnosis delayed by some spine issues too) and it was the stiffness that first caused him to consider a diagnosis of the illness he was researching to eliminate. Sometimes my right hip and my left shoulder (sometimes the right) feel a bit stiff but I don’t know how to distinguish between “normal” stiffness and ALS stiffness. And sometimes it does seem like I’m putting a bit more effort in when I’m holding things with my arms, but nothing I can’t actually do. (I know, it’s generally “failing” not “feeling”)

I’m taking some solace in the statistical odds and that early on I was experiencing some tingling (primarily in fingers) and other weird sensations. This tingling has recently returned more consistently though still intermittently so I’m hopeful it points to something else (and that it’s not something like a pinched nerve alongside ALS). Additionally, I seem to able to perform things normally (stairs, lifting, walking toe to toe, standing on one leg) with the caveat that there’s some stiffness/soreness at times beyond what I’ve previously experienced and there’s some occasional slight thigh trembling going downstairs (not all the time).

My PCP is a nurse practitioner and she finds me in generally good health. My physical at the end of October gave her no concerns but because of that initial tingling she did recommend I see a neurologist. I have a sort of attending neurologist because I also have Tourette’s Syndrome and had a possible MS scare 13 years ago. I’m finally getting in to see the neurologist next week although I got the impression any type of NCS/EMG wouldn’t happen for at least a month after that consultation (my PCP would like a NCS done, I’ve gotten mixed messages from the neuro staff if they were also doing an EMG when that happens, guess I’ll see what doc says next week).

My PCP saw me earlier this month for a follow-up on another matter and did look at my arm after the twitch developed but there was no twitch at the time—she didn’t seem terribly concerned and also pushed my arm around and said she didn’t hear any crunches and that it seemed to move fine as she manipulated it.

On many levels I’m not that concerned either, but now and then I become worried that these could be early symptoms and some of the stiffness/soreness are other muscles starting to pick up the slack for problematic ones—some type of early stage slow progression. I am hopeful it’s something benign and have also realized it could be MS based on my optic neuritis episode over a decade ago—it’s possible the tingling and some of the other “symptoms” could mean I have MS and experiencing my first relapse after a Clinically Isolated Syndrome event a decade ago (I know that’s nobody’s department here).

So basically I’m asking—am I being a little nuts? Letting the anxiety we all feel in the present Covid situation feed into the anxieties we all have on some level about our health? I’m going to the neuro regardless but it’d be nice to get a little feedback to help me through the next week.

I am continually amazed by this forum and am so impressed by so many PALS and CALS and am thankful that they take time out to talk to the DIHALSers and that they provide such great support for their fellow PALS and CALS. Some of the posts in the other forums have really moved me—I never post because I’m an “outsider”, but I’m with you in heart and spirit regardless. Someday we’ll know a world without ALS. Thank you for your time and any advice you can provide.
 

lgelb

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Since you have read up, I presume you're aware that ALS doesn't typically present bilaterally in distal limb regions, nor does the idea of "picking up the slack" account for soreness/stiffness as you describe. MS onset a decade after an untreated CIS event would be pretty rare, too. So neither is the way to bet -- fortunately!

Let us know how the neuro goes.

Best,
Laurie
 

Tauru_Verte

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Thanks, Laurie. You’re such a great resource for so many here. The CIS was treated with corticosteroids a decade ago—but I’m still optimistic that’s really all it was back then, random optic neuritis. And I totally get what you’re saying about the unlikelihood of bilateral presentation. I’ll be sure to report back what I hear from the neuro next week (and any potential follow-up). Thanks again, I really appreciate your reassurance of what the logical part of my brain has been telling my occasionally panicked amygdala.
 

jonico

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Tauru_Verte, Your post heading says "Likely I'm Fine". I agree.

Later, after paragraphs of ramblings describing everything I feel each morning when I wake up, you ask - "So basically I’m asking—am I being a little nuts? Letting the anxiety we all feel in the present Covid situation feed into the anxieties we all have on some level about our health?" I agree. Probably not nuts, but the latter part, yes.

My wife, who had ALS, didn't spend an ounce of time researching all the statistics and data you have rather painstakingly uncovered pointing to the chances she had ALS. She spent a boatload of time researching every other explanation for the rather gradual loss of use she initially had in her left arm, then gradually her legs, then gradually her bulbar area, then gradually other areas. There were twitches and fasciculations along the way, but they were not the main issue.

Jon
 
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Tauru_Verte

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Firstly, I again want to thank folks for feedback and do not intend to cause any strife for folks here—I’m trying my best to be respectful of the challenges and frustrations so many face.

Had my first neuro appointment today. She has ordered a spinal MRI for next week and will do a NCS/EMG in about a month on both arms and one foot or leg. She didn’t voice any particular concerns or alarm (other than I have terrible eyesight and said my glasses must be very strong). Her main comments were that my reflexes were a bit strong (or something to that effect), but nothing she would describe as “pathological”. And that some people just have stronger reflexes generally. Also somewhat not quite in keeping with strong reflexes, she mentioned that my calves and feet looked a bit like what one would see with Charcot-Marie-Tooth disease (big calves, hammer toes, tiny ankles, somewhat of a high arch) but didn’t really go into it and didn’t diagnose anything.

I did ask if she thought whatever I was experiencing was probably benign and she did say probably yes and that she wasn’t “looking for anything major” or some similar language. She also felt the fasciculations were likely benign but pointed out needed to make sure there aren’t any hidden ones (EMG). I’ve been treated by her before and was frustratingly reminded that she’s not the most communicative person and can be a bit flippant, but she’s mostly pleasant and seems sharp. I purposefully did not reference any particular disease so she could conduct her exam normally. I do have an online consult with another (better regarded) neuro next week so maybe I can get a few answers there.

I do find myself with some mild leg stiffness, soreness, and cramping this afternoon and a few other days but nothing harsh or dramatic. I know I need to wait for tests, but any thoughts on what the neuro said? I somehow walked out feeling both reassured and not reassured based on her sort of causal musing and slightly contradictory observations.
 

lgelb

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She's ticking boxes -- sounds very thorough and likely she is taking your past CIS ep into account. I don't think we can prejudge otherwise. You'll know more after the tests, but again there seems no reason to think about ALS.
 
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