Low low possibility als, tongue fasciculations, more likely sleep apnea

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Bokkin

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Hey all,

I've been lurking for a while and wanted to say how awesome alot of you PALS are to hyper anxious people. As one of those people I've scoured pretty much every tongue fasciculation thread on this site, and others. TL;DR version first

-Nightly sweating during sleep destroying my sleep quality, also causing an antagonistic personal relationship with sleep.
-Full body diffuse fasciculations that I can feel (above knee, ribs, forearm, hand, shoulder blade, jaw, scalp line, claves, abs, pectorals), and do not persist outside of 1 exception. I hear full body diffuse is a sign that it is not a MND, but more likely BFS.
-Tongue fasciculations where the tongue is at rest that I can't feel, but I can see, (not the bad of worms kind), and at most 5-10x per min. Left, right and center.
-No weakness in anything noticeable, pretty diligent testing, no problem swallowing, small almost non-mentionable speech issue, yawning that is probably for terrible sleep quality for 2 months, and post-nasal drip.
-High anxiety, but not usually over medical stuff. Before this I went for an annual physical and blood work every Feb for almost 5 years (I'm 30 now), and that was it.
-Night sweats put me over the edge once they were every night.
-Merino wool blanket, this is my gift to you PALS with thermoregulation issues, it is amazing. This has made my human sized sweats spots into just sweat on my neck and chest. I still wake up every 3-4am and have an impossible time getting back to sleep. I used to lose 2+ pounds a night just in sweat, and I'm 5-9" and 145.
-New blood work elevated blood co2, potentially looking at sleep apnea, which would cover everything from the night sweats to the fasciculations, although the tongue ones still irk me a bit.

My issues started a year ago with 1-2 times a week night sweats (like leave a human wet-spot night sweats), and progressed into every night I have night sweats as of early January. So bad the smell went through the waterproof mattress protector and my side of the mattress needs steam cleaning here and there. It progressed pretty gradually, so obviously I thought I had all the cancer. With scans and bloods done relieving alot of that worry, I also started getting twitches about a month ago, very noticeably when laying down before bed or in the morning that have developed into me feeling them sometimes while working from home at my desk (usually the calves or area right above knee, sometimes the shoulder blade area or upper abs), or while driving I'll feel one in my jaw or edge of scalp. When resting they pop up everywhere and usually for only 1 or 2 hellos in any one spot. I had 1 instance where my left thumb wouldn't stop twitching for over an hour early on noticing the twitching, even with stretching it and massaging it, the muscle on the top of my hand between my thumb and index was actually preventing me from sleeping. That is the only incidence of persistence in any 1 location. Obviously back to cancer, paraneoplastic issues, then I searched ("night" "sweats" "fasciculations") forum into google and found this site. Learning fascis come from muscle death, and being fully body diffuse is likely a big eliminator, I was relieved. With night sweats on this forum, very hit and miss on the reports, and nothing described like I have: 60 in 2 months, and probably 120-150 across a year, with no weakness in anything, but a decent loss in weight (160-140). I have popped back up to a more healthy 145-148, eat very clean, and take all the supplements (EGCG, turmeric, echinacea, resveratrol, vit d, lysine, vit e, beta carotene, alpha lipoic acid, n-acetyl-l-cystine, DHA omega fatty acids, a multivitamin, you get it, I'm not vitamin deficient in any way).

After a decent amount of reading, I finally went into the bathroom and looked at my tongue completely at rest inside my mouth. Much to the detriment of my anxiety, I noticed very slight contractions in the middle and both sides. The middle fasciculations dimple down inwards of the tongue, and the lateral ones look just like small twitches. These only happen I say 1-2 times per 10 seconds at the most, and sometimes I can go 30-60 seconds and not see any. The lateral ones can happen a few times in a row rarely, but mostly 1 small flicker at a time. When 1 shows, usually 2-3 more will show in the next 30 seconds. For strength and mobility, I can roll my tongue in both directions, do the hotdog, cheek test, whistle just fine, etc.... Reading alot of posts that was a good sign. Further worrying symptoms for my anxiety were I've had post-nasal drip for 2-3 months, yawning alot everyday sometimes even 10 times in a short period of time when I felt awake (I mentally usually try to just be like yeah, because you haven't gotten a good nights rest in like 60 days dude), and what feels like a stumbling over words when I'm not thinking about talking (off the top). When I read I can speed read out loud quite quick and annunciate quite well. It usually happens when I'm trying to describe something in detail that happened earlier in the day. According to most PALS talking about their speech, it's quite obvious, and it's not something that comes and goes, so yay another relief. Absolutely zero issue with swallowing anything. Again yay.

Finally for anyone who searches "tongue" "fasciculations" forum/reddit/etc.... I hope you read this next part.

I got some more recent bloodwork done and it seems like I have slightly elevated blood co2 levels. My CRP and ESR are 0 (basically very low inflammation in my body), all the rest of my CBC and metabolic panel are right in the middle of normal outside of co2. I'm planning on doing a sleep study to determine what is going on based on that. I wanted others researching like me to see a post where someone has their issues, but also a different avenue to look at. My wife complains about how I breath at night sometimes and with the elevated blood co2 things kind of clicked. I have kinda terrible asthmatic lungs as well. I wanted people like me to maybe find this and look in other directions but the absolute most severe. It has made my life rough and very emotional for 2 months. On the upside I will be doing the Seattle ALS walk this September. So many firm, yet still nice people dealing with hyper anxious people fearing the worst, and ya'll definitely need some more love, so I'll try and see what I can do. For anyone who got this far reading, thanks. Any input outside of what I'm looking at would be greatly appreciated. I still am bothered by the tongue fasciculations, and I plan on monitoring them, and making sure there is no weakness in my head area or limbs.

A former lurker,
-David
 

lgelb

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Um, yeah, a sleep study sounds like a good idea. And maybe reconsideration of all the money you're spending on supplements you probably don't need, that your body still has to metabolize.

As you say, ALS isn't a consideration.

Best,
Laurie
 

Bokkin

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Hi Laurie!

I’ve seen you on quite the few posts while lurking and you have some incredible patience with anxiety filled people like myself. Just wanted to say thank you.

I plan on monitoring the fasciculations and making sure I don’t take a neuro appointment / EMG appointment from someone with actual pressing issues until I see some weakness show up.

I would like some clarity on the tongue fasciculations I can see but not feel, and diffuse body-wide fasciculations I can both see and feel. Them happening at the same time, from what I’ve read, in and of itself is a very clear sign that there is no MND present. Now no one is 100% sure on anything, but especially without weakness anywhere, that seems like a pretty closed case. Seeing those in the mirror really bothered me, and through thorough searching I’ve only found a couple of people who have described the same thing. Almost everyone on bfs forums or Reddit for bfs talks about feeling the twitches. I never once have. I’ve also read that the super tiny dimples could be fibrillation, and that the tongue is one of the only spots where fibrillation could be visible (fibrillation being pretty highly suspect of denervation from what I’ve read). Of all the things I’ve noticed, the tongue issue and it’s specifics really lit up my worry. Sorry if that is a bit annoying.

Fasciculations being a symptom of MND because there is damage that already has been done to the muscle is something I am aware of, and through everything is one of the things keeping me being reasonable in my decision making.

Thank you,
-David
 

affected

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The great news is that twitching means nothing. So whether you can feel them or not truly doesn't mean a thing.
You can report back if you see a doctor and let us know what is diagnosed. We can't replace seeing a doctor I'm afraid, we are busy supporting people who are terminally ill. All the very best, working with a doctor to solve whatever is going on.
 

lgelb

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(1) Not all fasciculations are malign, let alone ALS-connected. Most are benign.
(2) Most tongue twitches are not fasciculations, either, they're muscle spasms, so the primary problem is the muscle, not the motor neurons as in ALS. If you search on tongue spasms, you'll find possible causes and treatments.
 

affected

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Please also note that healthy tongues wriggle and seem to spasm if you examine them in a mirror. This does not indicate there is anything wrong so searching on tongue spasms may simply alarm you further. You are far better off going to discuss all this with your doctor who can examine you and advise on exactly what they find.
 
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