Concerns over ALS/MND symptoms

[sjc686]

Hi everyone.

Thanks for taking the time to read this (I know this might be lengthy). Needless to say (but I’ll say it anyway) I’ve some recurring (and rather relentless) concerns over ALS/MND.

Let me begin with explaining the progression of my symptoms.

I’m a 24 year old male, and about 3.5-5 years ago I began to experience fasciculations and cramping on the insides of both my feet. I noticed the twitching more at night while I was lying in bed than I did during the day. They would cramp from time to time, but that is typically not experienced anymore. The fasciculations are now everywhere (and I mean EVERYWHERE), occurring sporadically as well as sometimes occurring when I apply force using a muscle (i.e., upon flexing either bicep I’ll get a few arm twitches, same when stretching upon waking, yawning, etc).

My other symptoms include a rather noticeable trembling/tremor upon stretching/flexing my left hand, and trembling upon flexing muscles in arms. An intermittent facial heaviness is also experienced—my face will tremble when I’ve been smiling for longer than a few seconds.

I used to be a fairly active guy, lifted weights and engaged in various cardio exercises every so often. However, I’ve been working at a desk job for the past two years and haven’t lifted weights in about a year or so—could the perceived weakness be due to disuse? When I engage my muscles to lift heavy objects, I’m still able to do so, but typically experience a good amount of twitching/trembling afterward and feel rather weak. I feel like I’m noticing some weakness (including the hand trembling, etc) but my neuro said he didn’t notice any clinical weakness during my exam.

He also ordered me to receive a 4 limb EMG which came back normal.

Other symptoms I believe I should mention include:
Possible over-salivation, notice only when speaking.
Periods of frequent yawning or sighing.
Bladder issues, intermittent urine leakage in between trips to bathroom.

All of the above-mentioned symptoms are concerning me; however, what is most alarming is the facial heaviness as well as the hand trembling upon stretching/flexing. My bicep muscles also do this, when I flex my muscles, my whole arm will tremble rather noticeably.

Forgive the length of this post; I’ve been experiencing a great deal of worry about my symptoms for the past few months.

 

[sadiemae]

Re: New guy, new worries.

https://www.alsforums.com/forum/do-...might-have-amyotrophic-lateral-sclerosis.html Your age and the fact that you had clean EMG are adressed in the posts above

 

[Pat Paine]

Re: New guy, new worries.

Dear new guy,
Your symptoms do NOT sound like ALS. After 3 yrs you would have profound
weakNess,like inabilty to open jars, turn key in igintion,wt loss-considerable, if it were ALS
Stop worrying and count your blessings.
Pat

 

[sjc686]

Re: New guy, new worries.

Thanks for your responses.

I'm having issues with lessening the concern I have over potential onset of ALS/other MND. My GP mentioned BFS some time ago, but that diagnosis just seems too… vague.

The fascics have definitely increased in frequency since they began in my feet those years ago. I can't recall exactly when they spread to the rest of my body, yet they still have—they're there (in one form or another) every day.

So is it the general consensus that I ought not to concern myself over what I perceive as facial heaviness/awkwardness? I'm still able to form sentences and speak relatively coherently.

Also, the trembling in my hands and arms upon exertion—that's also something I ought not worry about?

I mean absolutely NO disrespect toward anyone in this community in voicing my concerns—my most humble apologies if I have done so.

 

[limegreenphysicist]

Re: New guy, new worries.

Dear New Guy,

Sorry you found yourself here but you absolutely do not have ALS. Symptoms for 3 years with a clean EMG on four limbs Wow, absolutely do not worry about ALS. The facial stuff with the urinary leakage along with your age would lean more towards something like MS. If you are really concerned I would opt for the MRI. Hope this helps. If ya need anything else I'm here.

Kel Bel

 

[Blizna]

Re: New guy, new worries.

sjc686, you have been twitching for 3,5-5 years. That is something nearly impossible with ALS at your age. I am in the same boat! 25 years old, twitching 3,5 years, trembling and tremors when flexing muscles, but no weakness and clean EMG.
That is really BFS, visit aboutbfs.com and read the symptoms..many there even did not have EMG and are OK.
The facial trembling is something I am experiencing for years! When I smile for a long time, my corners of mouth start to shake and it gets worse...its normal for nervous people, do not worry about this one.

 

[sjc686]

Re: New guy, new worries.

Another day, another concern. Forgive me if I'm being ridiculous—

I feel like I've been sighing and yawning an awful lot, MUCH more than normal. I wake up between 2 to 4 times a night, which I am now attributing to apnea related to possible respiratory system dysfunction. On top of a recurring cough, I'm also experiencing this "foggy" feeling—that I'm just floating along almost in a dreamlike state during my waking life.

All of these symptoms are incredibly worrisome, and I don't know if what I'm experiencing is anxiety-related exhaustion, or if I really am experiencing onset symptoms.

I know I had the EMG, and the doctor said that everything was normal.. But I'm fearing that he didn't perform it correctly (most everyone I've spoken to who's had an EMG states that once the needle goes in, the doctor will leave it there for a few seconds and then ask the person to flex/move the limb. The doctor who performed my EMG stuck the muscle, moved the needle around and then asked me to flex before almost immediately removing the needle).

I know that what I should be concerned about is clinical weakness, of which I don't have any. But the breathing/yawning/sighing stuff, the facial-heaviness thing and the intermittent bouts of craaazy twitching are just really throwing me off...

 

[abbas child]

Re: New guy, new worries.

You still don't have ALS to worry about. You might, however, see about going to a Pulmonary doc and getting your breathing checked. The apnea, if there, may mean you need a C Pap for sleeping. Your fogginess and yawning sound like lack of sleep due to lack of breathing during sleep.

Again, please don't be concerned any more about ALS. You really aren't describing ALS symptoms at all... but you do need to breathe during the night. ;-)

 

[sjc686]

Re: New guy, new worries.

Before I begin (again) I'd just like to thank everyone for their timely responses.

The frequent sighing/yawning shouldn't be alarming? I mean, it sort of just started one day, other days it won't be there... But the past few days it's been pretty constant.

And regarding the facial heaviness/tightness: that doesn't sound alarming?

I'm having a difficult time wrapping my head around not being concerned over ALS... Especially since my EMG was on my arms/legs and not my face.

 

[trfogey]

Re: New guy, new worries.

I'm having a difficult time wrapping my head around not being concerned over ALS... Especially since my EMG was on my arms/legs and not my face.

Spend less time testing your body and noting "symptoms" and more time actually using your body. Nothing that you have complained about here is a symptom of ALS, and your clean EMG confirms that you don't have ALS.

After 3.5 to 5 years, half of the people who are diagnosed with ALS are dead, and the overwhelming majority of the still-living half are profoundly crippled by the disease, with significant loss of function, if not total loss of use, of multiple limbs. Doesn't sound much like you, does it?

Don't worry about wrapping your head around the idea you shouldn't be concerned about ALS. Once you unwrap the blinders you've placed on your own eyes by dabbling with Internet self-diagnosis, it will be easy to get back on the right track.

Good luck.

 

[sjc686]

Yes, yes... It's me again. I do apologize for my persistence... But I've failed to mention an additional symtom I've been experiencing these past few weeks.

It seems as though I am producing a lot more saliva than normal. I'd say this began two or so weeks ago. I've found that I'll sometimes have to wipe the corners of my lips more than I have before, and have to remind myself to swallow when I realize that saliva has been pooling in my mouth. I don't know about excess salivation being a symptom of anxiety...?

Anyhow, there have been a few times where I've drooled a bit upon speaking from having a fair amount of saliva in my mouth at a time. Should I be concerned over this?

(I have begun seeing a therapist for my anxiety issues relating to this among other things, before anyone asks.)

Thanks in advance for any/all responses.

 

[Blizna]

I had this problem last year...turned out to be probably caused by mouth infection/irritation from my tongue testing. It went away after few weeks. I too had to wipe the corner of my mouth...I even knew that it was the right gland producing more saliva.

 

[limegreenphysicist]

I'd like to comment on the yawning and sighing...with anxiety as you become more anxious you begin the breathe less or better word shallow. This shallow breathing will proceed to problems with apnea like disturbances even in people that have never had apnea, this also causes a type of foggy or dizzy feeling upon waking due to the lack of oxygen getting to the brain. When you have a lack of oxygen this is the cause of yawning. It is very common for people with anxiety or depression to develop apnea and excessive yawning.

The drooling thing well I choke on mine but I dont worry about it bc logically I connect it to my anxiety. When I was in the diagnosis process, I drooled in my math book one day and I freaked and began having excess saliva all the time. After my diagnosis, and coming to terms with my disease, my anxiety went down and now I never drool or have excess saliva anymore.

You will be surprised once you start accepting that you dont have ALS, all your "symptoms" will start to disappear. The key is treating that anxiety. It destroyed my life..convincing yourself you have a disease that you really don't is more detremental to your emotional well being that actually having the disease bc you are never able to cross over into the acceptance stage. You are just going to have to fight through and accept you do not have ALS.

I hope your treatment goes well so you can enjoy Christmas. If you need anything, I'm on here a couple of times a week. Merry Christmas sweety and stop worrying, you lose so much happiness.

 

[joelc]

Just for the record, if you have ALS then once it advances a person can have excessive yawning and it has nothing to do with lack of oxygen. Excessive drooling is also part of it and is caused because a person can't swallow. This is a very different situation than what you describe. I would guess yours is anxiety related.

 

[trfogey]

sjc686,

If you can drink your morning coffee and your evening cocktail without choking, then the excess saliva that you think that you have is not bulbar ALS.

Once again, if all of the things that you have listed here had been caused by ALS over the past 3 to 5 years, you would be substantially handicapped by the disease. The fact that you are not disabled after all this time would be, along with your clean EMG, definitive proof that you don't have ALS to any rational person. Why isn't that evidence sufficient to convince you? When you find the answer to that question, you will find the path that will lead you to the actual solution to your real problem.

If you want to keep clutching at tenuous threads to support your claims, there is plenty of garbled information that you can twist to your needs on the Internet. However, I suspect that less exercise of both your mousing hand and your imagination and more exercise of your arms and legs would do you much more good.