Concerned with tongue

John Black

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Hello.
My short story is im a 27/m.
I had some head/neck pain sometime ago. And got MRI for brain(to except brain tumor). MRI returned just fine and my neurologist said that its just a muscle pain so i shouldn't worry about it and do some yoga.

But after a week or so my tongue started to feel strange. Like its pulling back and there is excessive amount of saliva coming out beneath it.
I have some issues swallowing but not too bad and my speech is seems fine when i ask people around about it. I have some twitches here and there in the body but nothing too serious and my strength is pretty stable.

But the perspective of bulbar als is driving me crazy, the anxiety is just too hard to handle.

Sorry for taking your time and thanks in advance for any answers. God bless!
 

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I've never heard of bulbar ALS presenting that way. I would try a spray for dry mouth, and treat any allergies or GERD.
 

John Black

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I've never heard of bulbar ALS presenting that way. I would try a spray for dry mouth, and treat any allergies or GERD.
Thanks for your answer so much!
 

John Black

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Got a little update for people who gonna check this thread in the future prob.
My tongue is still at the same state and i have no problems with speech and now its basically only saliva problem left.

However yesterday I got some weakness in right hand pinky and ring finger. Its not so that they are unusable i can do still everything. But they are pretty compromised and i feel a burning/itching sensation in the back of the arm where the muscles are and in my forearm. It seems like I injured some muscles in yoga class(however it started to be weak a day after a class), but its interesting that pain is almost non present. So I scheduled neurologist visit and EMG test in the next weekend, gonna post update here on the results.
 

John Black

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Today developed trouble with swallowing - it seems like i swallow and after that the food is still in my throat, altho my speech is as perfect as it was before. Now really worried about ALS possibility.
 

Bestfriends14

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Nothing at all like ALS. If you would like, please post your EMG results when you get them so you can show other DIHALS members your results that clear you of ALS. That way, this will give others peace of mind, who also have health anxiety, to see that your symptoms do not align with ALS. Until after your EMG then...
 

John Black

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Hello again, hopefully my last post here.
So today my muscles felt like I just completed a marathon. Hardly could move my legs and stay in balance.

my right arm went completely weak cannot use computer mouse.

Contacted my PCP and he said that I should go and do EMG right now and so I went there.

EMG showed no pinched nerves in elbow, and after needle emg the als was ruled out.
Altho they did only my arms, and i have twitches mainly in legs, and my legs is pretty stiff and fatigued now.
But doctor said that muscle fatigue is not something common in ALS without a lot of clinical weakness. And since my arms was the first weak region its the place we should check.

So the end verdict is C8 pinched nerve in the neck(but need to do MRI) + GERD causing saliva problems and tongue movement without twitches. Also they stated that there is probably some muscle destruction that causes excessive creatine to be present and thats why i feel multiple fatigue muscles in the legs. But not something that can be observed in ALS.

So hopefully Its gonna be ok. Thanks for the help and your input, i appreciate the help and im for sure overstayed my welcome, so i wanna say sorry to members of this forums and May The God Be With All of You.

Have a great day.
 

Nikki J

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Congratulations and thank you for posting your results. It is always helpful to others to see what happened.

best of luck and a long and happy life
 

John Black

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So unfortunately Im back. :)

So when I left this thread I had clean EMG but weakness still persisted.
And my neuro sent me to another EMG of my arms.
I attach the EMG results table below. I also have blocked f-waves in all muscles tested like other poster there.

I also did full spine MRI that found C5-C7 discs shrinked in size and also three protrusions.

I saw the really similar thread just below me so thought of posting update. Since I tested already quite a bit maybe it will help someone.
So I did blood test = all fine, except monocytes(but only in %, not absolute value, and its just 0.5% above norm)
Checked CK levels = fine
Checked thyroid = fine
Thyroid hormones = fine

The symptoms i still have:
arms weaker(but no atrophy visible and no loss of function, right arm is a weaker than left);
shoulders weaker;
legs are fine, I can run quite easily. But if I do squats they are fatigued super fast;
sometimes I got chills(like something is wrong with thermoregulation of my body), and i dont even wanna move from that position; fasiculations in legs quite often(rare in arms/face);
facial muscles really weak;
sometimes i feel like im biting my tongue and when i wake up i have a feeling that ive been doing it all night;
tongue is a bit weak(no slurred speech yet);
also tongue fatigues quite fast too when i speak a lot;
end of tongue sometimes have a burning sensation in it;
trouble swallowing(feels like nasal drip, sometimes pieces of food or liquid left in the back)
also sometimes saliva stuck down my throat so i need to cough it up ;(
my right leg have a constant feeling of buzzing when i place it on something, and it feels like there is something right below my small finger in this area, like some internal object that is buzzing here(i think maybe its small fasics). Also have normal twitching there.
when i move my neck sometimes i feel sort of lump in there(i tought it was thyroid but was wrong)
jaw is tired almost 24/7.

Overall I kinda dont know even what to think. My muscles seems equal right now(i hope), and i dont have failures that i can easily detect, or cramps. But i have a bunch of other stuff that make me really hard to come to any other condition other than ALS.

But taking my symptoms Im less than 2 months from my first tongue symptoms so even if its a Bulbar onset(but im 27 at its pretty rare for this age), isnt it a bit too fast of a progression?

My neuro suggest another EMG for legs too this time. And its scheduled for next week.
 

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Nikki J

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What exactly did your neuro say? Myogenic changes on emg which you have point away from ALS. You may have a primary muscle issue based on it but you have no spontaneous activity on emg as seen in ALS and myogenic not neurogenic changes

whatever may be wrong with you besides your neck issues it doesn’t look like ALS based on the emg
 

John Black

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Thanks, NIkki.

He said that ALS can only be in conversation if there is lab problems and clinical problems. Since my EMG did not show any issues with Spontaneous activity, and on clinical trial I can do all the tests(they pretty easy in terms of strength), he said that ALS is off the table now.

But he sent me to another EMG next week with arms and legs but overall he wasn't confused at all.
Basically he acknowledged that I have some issues, but added that he cannot asses perceived weakness, but since I can do everything on clinical test - Im good to go, but he wanted to make sure that all 4 limbs are tested.

At the end he kinda pushed the notion that it can be not a neurological problem at all. Since I have normal blood tests with CK, kinda normal EMG, and Im 27 years old, then he wasn't that bothered in terms of neurology at all.

About neck - Its kinda weird, but I never saw anyone has it as an onset or in early presentation. And since Im less than 2 month in - its hard to believe that its already affected.

Again thanks for your opinion and time!
 

Nikki J

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I meant your neck mri symptoms. Your doctor said ALS is off the table. Emgs look at other things besides ALS. Your emg doesn’t show ALS. You can let us know after the next emg what your diagnosis is but you need to stop pursuing als
 

John Black

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Hello
Got my second EMG done. Attached the results so people with similar symptoms can check it out.

Conclusion:
Data from EMG suggest generalized primary-muscle process with slight accent on proximal muscles of the shoulder region and calf muscles.

I'm kinda more optimistic now, since it's fine. Although a bit cautious because I saw must DIHALS who got diagnosed got clean EMGs with slight changes at first. Got my neuro tomorrow. Won't be posting here unless there are some ALS related news.

Thanks.
 

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Nikki J

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Again the changes point away from ALS. This is different than having something that is abnormal in the same way as ALS but not meeting the full criteria which is very uncommon anyway. Most if not all of what I consider slight changes that panic people turn out to be nothing. Your emgs are saying there is something else
 

John Black

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Hello, Nikki.
I totally understand this and thank you so much for your time and help.
When I re-read my last post it can come out a bit rude, but it's not what I wanted really ;)
I'm just a bit cautious of this situation :)

Thanks again for your time and effort to help others!
I wont post there unless I'm gonna receive some news on ALS, which I hope I won't.
 
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