Bulbar as well as leg symptoms, worried it may not be nothing

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mayoung10

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I have been having a weird feeling in my neck for the past 3 weeks. It is hard to describe but my neck feels very "thick", I don't have breathing or speech difficulties but the front neck area feels very thick and tight, like I am being choked.

In addition to this I have been experiencing twitching in my legs, mostly calves which has started since a few days after the neck symptoms. These twitches and cramping have been going on consistently everyday primarily in those two areas which more twitching on the right leg.

There has also been twitching in my thighs and abdomen which are fairly regular but the majority of twitching is going on in my calves.

I have not undergone any physical stress or mental stress and have not experienced these symptoms in my entire life since now.
 

KarenNWendyn

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Hi there. Please read this if you have not already done so: Important - READ BEFORE POSTING! Answers to common concerns about possible symptoms!

A thick feeling in the neck has nothing to do with ALS. In ALS, things don’t feel thick, funny, heavy, tight, weak, or achy. ALS is a brain disease affecting motor neurons. These are the nerves which cause the muscles to contract. These nerves die off, so the muscles don’t work, and this results in loss of function. Usually with bulbar, the first symptom is slurred speech.

Twitching is common, nonspecific, and meaningless in the absence of muscle function failure.

So nothing in your post suggests ALS. Great news. Please see your doctor regarding the symptoms you are noticing.
 

lgelb

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I would start recording your breathing during sleep (there are apps, too) and/or ask your doc about whether a sleep study/RLS screening is warranted. But you're in the wrong place here.

Best,
Laurie
 

mayoung10

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My symptoms started 2 months ago now. They first started with constant twitching in mainly my right calf with occasional twitching all over my body but especially in my left bicep. This occurred for 2-3 weeks and as a result I went to see my doctor.

While she said ALS is definitely possible she said it's too early to know for sure and we need to wait and see. In the meantime she prescribed me magnesium.

Fast forward over a month. I am dropping weight, from 130 to 125. I am struggling to maintain 130 even if I eat a lot everyday, I have made an effort to eat calorie dense foods and even fast food if necessary.

In addition my left arm is noticeably different. I can feel this when I use my keyboard, it feels like my fingers need to strain more than usual.

I go for runs regularly and have noticed my body feels different too. Whereas before I would always run out of breathe before my legs gave out, now my calves start to fatigue before the rest of my body does.


I'm a young guy. I know that getting it at my age is astronomically rare, however something in my body has changed and it is not getting any better.

My doctor told me that in 2 months if there is no improvement she will get me an EMG. I am going to see her tomorrow.
 

KarenNWendyn

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I merged current post with previous thread. It helps readers to have all your information in one place.

You’re mentioning a lot of “feeling weak”. Please reread the sticky we referenced above that says “Read before posting”. ALS is about failing, not feeling. Is there anything you can no longer do? The fact you can still run speaks volumes against this being ALS. As previously noted, twitching is meaningless.

In terms of one arm appearing different— everyone has some normal asymmetry. It could also relate to a mechanical imbalance.

You’re seeing your doctor this week. Have her assess your strength. Ask her if she thinks thyroid testing is appropriate given your weight loss. She might also suggest some ways you can increase your weight.

I still don’t see ALS in your post.
 

mayoung10

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I merged current post with previous thread. It helps readers to have all your information in one place.

You’re mentioning a lot of “feeling weak”. Please reread the sticky we referenced above that says “Read before posting”. ALS is about failing, not feeling. Is there anything you can no longer do? The fact you can still run speaks volumes against this being ALS. As previously noted, twitching is meaningless.

In terms of one arm appearing different— everyone has some normal asymmetry. It could also relate to a mechanical imbalance.

You’re seeing your doctor this week. Have her assess your strength. Ask her if she thinks thyroid testing is appropriate given your weight loss. She might also suggest some ways you can increase your weight.

I still don’t see ALS in your post.
I am not talking about feeling now. I was feeling weak at the beginning.

Now my body is different during exercise. My legs are now giving out before my lungs are, which has never been the case before.

My doctor ordered bloodwork and everything was in a normal range when I first came in. My weight has been stable for years now even during times of stress.

I know as a person with als how frustrating it is to see so many people who think they may have it. I know how rare it is.
I also know how vague the symptoms are at the start.

I don't want to wait a year down the line when my body starts to fail.

I am sure there is something wrong with me, and I hope my doctors can find it out.
 

Bestfriends14

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I'm not sure what that something is in terms of what is wrong with you, but it's not ALS. You have no symptoms that align with what ALS is. Hoping you can let this go and move on with what may actually be ailing you.

Good luck and take good care
 

mayoung10

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I wonder if there is any solution other than just being healthy and at mercy to the whims of this disease.
 

ShiftKicker

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Mod note- moved post to existing thread. Please only post here.
 

mayoung10

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So Update :

Tightness and numbness of muscle in my right calf has moved to my right foot, pinky and fourth toe slightly affected. I noticed this slightly changed my gait but I can still function 100% fine. It's more the twitching in my foot that is noticeable as well as the tightness around those toes.

In addition to that tightness of my throat has stayed fairly consistent.

My right arm also feels slight cramping and the bicep has fascinations occasionally.

I get fairly regular twitching in on my left abdominal muscle that occurs very strongly, it is not regular though.

I have noticed at this point it is very easy for my right leg to get pins and needles feeling, even something as sitting with my legs crossed can cause it to get pins and needles in less than a minute. This seems to correlate with the numbness and twitching I experience there.


At this point these symptoms are still mild and I can function in my day to day life fine. However it is showing a clear neurological change that has shown slight progression and no signs of improvement.

Twitching is sporadic day to day, sometimes being very strong and frequent and other times not. However the feeling of numbness and tightness I've noticed does not go away once it starts (right calf, toes).
 

KarenNWendyn

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Twitching means nothing.
Numbness and tingling are not ALS.
Are you not listening to what we’ve already told you?
Find a different diagnosis to chase. Fortunately you don’t belong here.
 

lgelb

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Ah, but the feeling in the R leg does go away, because you report that it keeps recurring. Likewise, you report sporadic twitching, cramping and pins 'n' needles.

As Karen says, ALS is the disease whose symptoms don't come and go.

I am not sure what you think you mean about being healthy and at the "whims of this disease," but the most serious feature you report is your legs giving out during exercise before your lungs.

If you have ramped up your workouts recently, be aware that overuse injuries are very common when you switch it up, as new muscles come into play. Having a certified trainer watch what you do can't hurt.

I don't think an EMG will be revealing, but if you are pinning your future on it, best to get it done. And then be prepared to move on, reassess everything relating to stress, sleep, diet you think is fine, etc.

Best,
Laurie
 

mayoung10

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I know some of you may be dealing with this terrible disease which may entitle you to a certain level of frustration and expertise.

But this attitude of dismissiveness is bordering on aggressive and rude at this point.

This is a rare disease with many cases of atypical onset, especially in the juvenile form.
All I know is I'm experiencing neurological symptoms that seem to be progressing, my doctor is the one who mentioned her concern of something serious like ALS.
 

lgelb

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If you have read other threads, you know you're not the first unfortunate person whose doc has prematurely (and likely misguidedly) mentioned ALS or supported your mention of it. It happens. S/he may even feel s/he is supporting your concerns.

You don't have to worry unduly about a few words, with no evidence behind them. As for neurological symptoms that seem to be progressing, we don't even know that these are symptoms of a neurological disorder. But even if they are, ALS is a pretty rare one, esp. in your age group, as you've pointed out, and the symptoms you report do not accord with the onsets of PALS here -- a very good thing.

Good luck with the EMG and the remainder of your diagnostic process.
 
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