Starting to Get Worried I Have ALS - (WARNING!) Tongue Pics and General Questions

NorthForNights

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Hi all,

It's been the most stressful few weeks of my life thinking that there is a realistic chance I could have ALS, or something similar, based on the combination and timing of some symptoms I've been experiencing... but for those of you who are diagnosed and battling this while taking your valuable time to respond to me and others on here - thank you so much. I can only imagine what you and your loved ones are going through, but it means the world just to hear from those of you who are in the trenches, battling this awful, ridiculous disease.

To begin. I am a 31 year old Caucasian male (turning 32 in August). I'm tall and lean, have been my whole life, and I do not smoke and do not even drink anymore. I try to stay fairly active, and go for long walks several times a week, in addition to doing light to moderate weight lifting when I can.

I suppose this all started quite a while ago actually in the Spring of 2019. I had noticed mild twitching and tingling in my left foot that would sometimes lead to my left calf... This would be mostly constant and exacerbate with exertion. I ended up going to my GP in July of 2019, and he did the typical physical stuff, in addition to ordering some blood work. Flash forward and I get a call from my doctor telling me to come in ASAP. He sits me down with a look of confusion and worry and tells me that my CK level is 13,250 U/L... 50 times higher than the top of the normal range. He says he's never seen anything like it in his 30 years practicing, and would only expect to see it in an hospital setting where someone had lost a limb with mass muscle tissue damage, or a massive coronary. He refers me to a neurologist right there. All I had done a day before the blood test was go kayaking for a bit, but I was a little sore.

While I'm grateful for Universal Health Care here in Canada, that did mean I had to wait until December of 2019 to see my neurologist for the first time. In that time between July and December of 2019, I did start to notice some more symptoms that I didn't really pay attention to at the time. I was having intermittent breathing difficulties, balance issues, and dizzy spells here and there. I also started getting a weird sensation in my cervical spine that would make my left arm and shoulder feel very tight and heavy -- almost cramped. I didn't experience clinical weakness, and while I was familiar with ALS (from Steve Gleason), I didn't suspect it in the slightest since those symptoms didn't really line up with MND/ALS as per Dr. Google.

I finally see the neurologist in December, and he, like my GP is shocked by my CK level... may need a research hospital, etc, etc. He asks me my history and does a physical evaluation and then an EMG and NCS within the first 30 minutes. I remember him noting my left calf was 'ever so slightly atrophied' compared to my right, but since I was right hand/foot dominate that it wasn't too alarming. He also mentioned I had a mild tremor in my left fingers and slight chorea in my left foot (the one that gives the issues). EMG and NCS showed nothing of concern and my reflexes were mostly normal if I recall. He then ordered a lumbar spine MRI and more blood work which fortunately showed a more normal CK level. Felt very satisfied with the appointment.

Got the lumbar spine MRI a month later. Overall not much to note, other than mild disc degeneration in one of my discs. Neuro doesn't think that's the cause of my symptoms. At this time I'm still experiencing all the same symptoms. My breathing issue episodes had gotten worse right before the pandemic actually hit, although it was never persistent for more than a day at time. I was lucky I was able to see a pulmonologist in February, who prescribed some asthma medication and pantoprazole for heart burn. Asthma meds never worked. I also then started getting this urge to clear my throat a lot which I still have, and food I had eaten could easily be coughed/hoarked up into the bathroom 10 minutes later while brushing my teeth. Wouldn't say I had swallowing difficulties though. I did also experience full body twitching for about a 7-10 day period then as well, which did mostly resolve, although it was very noticeable at the time.

This all goes off and on over the spring and early summer, until I see my neurologist in June 2020 who this time orders a brain MRI which would happen in October and show nothing abnormal. As the summer goes on I also start noticing I'm getting carpal tunnel like symptoms in my left hand which doesn't shock me since I'm an engineer, although I've never had the problem before. It's ever so slightly weaker than my right hand and the dexterity doesn't feel as good either. It also cramps easy, and twitches from time to time. No visible atrophy to this day though and it hasn't really 'progressed' negatively since then, but it's not getting better either.

The next bothersome symptom I started noticing this past September was that I was starting to get 'mush mouth', especially on work calls where I need to be clear and concise. It's definitely no where near the slurred speech I've heard with people in onset bulbar ALS, and my voice hasn't really changed other than getting hoarse from time to time, usually when the breathing issues are giving me a hard time, but I have had a few people make joking comments about it, including my girlfriend. Usually just some teasing when I fumble up a word, although no one has brought it up in a worried/serious fashion.

I did try taking a look at my tongue the other day after I started experiencing numbness and tingling on the left side of my lip and jaw pain after talking for only a few minutes... and I do think my tongue looks different. Pic attached. When I stretch out my tongue as much as I can, I notice that there is a dent in the middle at the back, and it kind of curls at the sides... I can't recall saying I noticed this in the past, as I used to 'scrape' my tongue before work along with brushing and mouth wash. There's no fasciculations at rest on the floor of the mouth, but it does have them with the 'worm crawling' look when I stick it out a bit... although maybe everyone's tongue twitches a bit when not at true rest? My tongue still seems strong though and I can move it around my mouth and curl it just fine.

In the past 2-3 weeks I've also noticed a large increase in the amount of twitching in my body, although it is never constant or too intense in any one particular muscle. It will subside for a day or two, and then come back for a day... usually at night. It certainly does favour the usual suspects though... my left calf (which cramps a lot), left bicep, and left shoulder/deltoid. 3 weeks ago I tried switching my workout in my shoulders and the next day my left one felt extremely tight with some burning... not the typical soreness I would expect. I am not noticing any weakness though. The curve ball in the ALS suspicion is that I do get sensory symptoms from time to time as well. Like cold to hot water in my bicep or calf. Often tingling in my hand/wrist too, and electrical sensations, although they are less common than the twitching. It's also important to note that my right side seems fine, although it rarely does get the fasciculations as well.

And woah just realized how much I typed so thanks for making it this far. I'll summarizes my symptoms here:

  • Spring 2019 to now (although has gotten much worse as of late): Left calf twitching with mild to moderate cramping, and weird sensations from time to time. Same with the left foot but not as much as the left calf
  • December 2019 to now: Mild to moderate breathing issues, although intermittent and can go away and come back for a few days or just a day.
  • December 2019 (cont.): Dizziness and balance issues, along with some cervical pain and tightness that subsided in a month.
  • February 2020 to now: Urge to clear my throat and the ability to cough up food that had been 'eaten' a few minutes before. I did have throat pain (not a sore throat) from about July to December of this year as well. I've also gotten larger (magnesium) pills tuck in it twice now, although I haven't had any issues with food or choking.
  • June 2020 to now: Very slight weakness in my left hand and forearm compared to my right that seems to be stagnant... maybe not even always weakness as much as there's just less endurance. It's not getting worse or better. Is sometimes accompanied by cramping, loss of dexterity, and numbness/tingling. Very rarely twitches but when it does its between the thumb and index finger. Picking up things with it feels awkward, although I've haven't dropped anything with my left hand.
  • September 2020 to now: 'Mush mouth', where I find myself fumbling words more often. Not typical slurred speech, but I do get jaw pain after talking for a while, and I have gotten some facial twitching and numbness/tingling near my left side of the lip. Seems to be getting slightly worse. Cheeks, lips, and tongue seem mobile and aren't weak, but I do feel my tongue is definitely starting to look weird and there are fasciculations, although not truly at rest. I feel like it has more 'folds' and crevices than it did before if that makes sense...
  • January 2021: Full body twitching, although much more on the left side of my body, and in specific areas (left calf, left foot, left bicep, left shoulder (rarest of the bunch). The twitching is not constant by any means and maybe occurs two dozen times a day (in total for all) in certain muscles and then stops. I do get some jerking before bed in my left bicep/arm too. It is sometimes accompanied by tightness, pain, cramping, cold/hot water sensations. My left calf is the worst of the bunch for all of this.
I have yet to experience true weakness anywhere other than my left hand and it's rather slight, but still noticeable. The symptoms seem mostly limited to my left side of the body in addition to some mouth/tongue things. I see no signs of atrophy. No one symptom is by any means constant, aside from the left calf cramping that is starting to almost be so, but everything is very frequent. Enough get me to sign up here and post this laughably long post. I do recover, although much slower, after exercise and it's a different kind of pain... more like a cramp or burn than anything achy and dull.

I do plan on seeing my neurologist about this in the near future, and hopefully scoring another EMG... but my worry is that if it something awful, that I may be too early to catch it if I were to go now? I don't want to go, have a clear EMG, and then have my symptoms progress again in a few months to where I now sound like the boy who cried wolf... How advanced do the symptoms of ALS/MND's need to be to show up on an EMG for example, even if there's no apparent atrophy or wide spread weakness?

If you're still here, thank you! If my symptoms do sound alarming please let me know so. If they sound like I'm being ridiculous please let me know so. I just appreciate honesty either way and I'm preparing for the worst. If it sounds like what you or a loved went though and you feel comfortable sharing please do with me. If it sounds nothing like what you or a loved went through please share as well. The engineer/scientist in my just finds it interesting to hear different sides, even in something as awful as ALS...

Thanks all,

And sorry, one last symptom that may be worth mentioning... but as the weather has gotten colder during my walks -- I am now noticing that my left hand almost becomes entirely immobile. Like can barely tap my fingers/thumbs or twist my forearm.

PS. Forgive me for the gross tongue pic...
 

Clearwater AL

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NorthForNights, I seldom post here unless something is over
the top.

But… as you wrote…

“And sorry, one last symptom that may be worth mentioning...
but as the weather has gotten colder during my walks -- I am now
noticing that my left hand almost becomes entirely immobile.
Like can barely tap my fingers/thumbs or twist my forearm.”

If that comes and goes when your hand warms up... it is not
ALS related. Scratch that off your list.

It sure hasn’t impeded your ability to type one handed...
2,159 words
179 lines
11,658 characters
29 paragraphs

But… as you also wrote from your Neurologist and the EMG
results December 2019.

“He also mentioned I had a mild tremor in my left fingers and slight
chorea in my left foot (the one that gives the issues). EMG and NCS
showed nothing of concern and my reflexes were mostly normal if I recall.”

("EMG and NCS showed nothing of concern and my reflexes were
mostly normal.")


Then…

“I do plan on seeing my neurologist about this in the near future,
and hopefully scoring another EMG... but my worry is that if it is
something awful, that I may be too early to catch it if I were to go now?
I don't want to go, have a clear EMG, and then have my symptoms
progress again in a few months to where I now sound like the boy
who cried wolf”

“I don't want to go, have a clear EMG”

North… people in their right minds pray for that. Many here would
do anything to go back and have one of those.

As Nikki replied with that link above… please do.

READ BEFORE POSTING! Answers to common concerns about possible symptoms.

PS. I had to compose this on Word first because I am down to typing with
one hand. It never came and went.
 
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NorthForNights

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Hate to be back, but I've seen a rapid decline in function since I posted 25 days ago... was convinced it was in my head after feeling foolish for posting here, but it's gotten really bad, really fast.

Only a day or so after I posted here I must have started getting the swallowing and throat issues as I feel like I've had it forever. It started with a constant lump in the throat and spasm sensation just below the Adam's apple seconds after swallowing liquids, which evolved into flat out having extreme difficulty swallowing liquids, exclusively. It's never constant and there are days where it hardly happens, but when it does I'm coughing it up. I'm also gurgling on saliva when I just swallow nothing. If I don't cough, or feel like I'm choking from something like water, I'll have a gagging fit instead to the point where I'm bursting blood vessels in my eyes each time. About 10 days ago I ended up having breathing difficulties and went to the ER where I was diagnosed with a milder case of aspiration pneumonia and was given antibiotics. Coronavirus negative. While in the ER they asked me to describe my swallowing issues and ended up triaging me to the on-call neurologist, which alarmed me, as I was expecting a gastro or ENT as I wasn't even thinking it would have been neurological in nature (if it even is). On call neurologist was an MS specialist and seemed concerned/confused. Basically said 'you don't have MS, but I'm going to call your neuro and strongly suggest he do another EMG/NCS very soon". She did a thorough fully body neurological exam and noted brisk knee reflexes (more so in my left), and saw my mouth was a little slow/weak when trying to do some facial flexing on the left side, etc. Still waiting to see my neurologist but expect it to take a while.

While the swallowing issues were happening, other symptoms I was experiencing started to negatively advance too. The twitching and cramping which was 90% confined to my left calf and foot spread up to my left thigh, and right calf and foot. This all happened pretty fast. Started getting twitching in my neck around the time of the swallowing issues. My right hand is also now very slow, similar to my left, and starting to cramp. I feel asleep the other day, and woke up to it numb with my right ring finger basically curled and moving/flexing on it's own. Had no control or feeling over it. Lasted about 30 seconds. Once the feeling returned in my hand it was really painful, almost like a joint pain, but when I touched my finger I couldn't feel the soreness in any one spot like a muscle would be sore. It was like a phantom soreness. My toes have done this too. I'm 31 and never experienced it before.

I'm also starting to get jerking issues to where I'm dropping things. Dropped my phone, work laptop, and just this past Sunday a mug of boiling hot green tea on my foot because my hand/forearm would just randomly jerk and cause my hand to let go. This is confined to both my forearms and hands. I can trigger it on cue by merely flexing them hard for a couple seconds.

Mouth tingling advanced and went from feeling like I'm drooling to actually drooling and pooling saliva on the left side of my mouth. This happens a few times a week and only in the evenings. Multiple people have noticed this now. I'm biting my cheeks like crazy each night and had to start wearing my night-guard again which I hadn't used in like 6 years to prevent bite marks on the insides of my cheeks and tongue. On the bright side, I noticed my tongue isn't actually twitching after Nikki directed me to the sticky. When it's flat in my mouth it's fine. Tongue can move side to side, but I can't really curl it that well anymore. Can still whistle though... Jaw hurts most mornings, probably from whatever I'm doing in my sleep. Some days I just don't feel like talking at all because my mouth is just so slow and weak.

My legs are very uncoordinated and I feel like I'm getting pushed in the direction I'm moving. This has been an issue for a while but got worse the past month. Have had to quit walks early because my left leg is just too wobbly and weak. Right legs better, but a far cry from where it was even 2 months ago. I can't stand for more than 10 minutes until my legs start to wobble. 8 months ago I was doing 800m sprints in 3 minutes. That's a completely foreign concept my brain and body can't even comprehend now when I think of it.

Anyway that's where I'm at now. Hoping this still sounds absolutely nothing like ALS/PLS because it's happening too fast or something like that? Not really sure what else this could be? CIDP perhaps?

I do have some questions about 'sensory' symptoms, which I've experienced i.e. the numbness, tingling in the face, pain, running water sensations, as well as weakness temporarily subsiding. All in the early phases of the disease of course. I know it's this forum's official stance to say they aren't part of ALS/PLS/PMA as per the sticky and some responses I see from the power members, yet a pretty quick comb through the PALS/CALS boards and I'd say a good third of users I randomly read who described their symptoms (some with with us, unfortunately many no longer) explaining they most definitely had very distinct and definitive sensory symptoms, particularly early on/pre-diagnosis, or times when their symptoms improved if only for a short while i.e. weakness. I find it's the younger crowd too i.e. those diagnosed before 50. Not going to name names out of respect, but it's a pretty darn large group of DX'd users and many very well respected here. I've found many resources/clinical presentation articles online which describe sensory symptoms in ALS, albeit the state they are rarer. I guess I understand it from the perspective of managing this forum with many hypochondriacs -- hopefully that's all I am too, coming here describing sensory symptoms and it's an easy way to have them go on their way, but I feel like it's not the true and complete story from what I'm reading here?

Thanks all for taking the time
 

Nikki J

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Sorry this is happening. All over symptoms don’t sound like ALS to me. I am not going to argue sensory issues with you as you will believe what you want.

there are many many neurologic conditions. If 10 days ago the ED neuro was contacting your neuro when are you being seen? It is up to them to provide guidance as to differentials
 

Bestfriends14

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Please list the names of "a third of DXd members" having sensory symptoms before having an official ALS diagnosis. If it was that many, the sticky would not be so firm on the stance of ALS having no sensory involvement. ALS is a motor neuron disease, not a sensory neuron disease, so you are not describing anything that would give rise to concerns of ALS.

Please provide members names.

Thx
 

lgelb

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Still not seeing any reason to suspect ALS. My advice is to follow out the diagnostic process. There are many other adult-onset neuromuscular disorders and many times that, systemic possibilities.
 
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