Bizarre Symptoms Worried about ALS. Thank you!

[BillCortez]

Hello all. First off, I have nothing but respect and admiration for all fo you and your families. I cant begin to imagine the presence of this illness, I keep yall in my payers.

Indeed, I have debated on whether or not to create this post, but I am going mad. I think my symptoms or "symptoms" started in February of this year, and this is what I am experiencing.

1. My tongue started to spasm in Feb or maybe earlier (I can feel it, and I can see the localized pinprick that spasms in the mirror). However, my tongue at rest in my mouth, is still, other than the normal movement (and my anxiety says tell me 'for now...')
2. My jaw began to feel tired, and this comes and goes
3. I wake up sweating, always under my chin soaked, and I wake up every 4 to 6 hours. (recent advance)
4. The underside of my tongue felt swollen at times, again coming and going.
5. This one is odd; the antitragus is the cartilage part of the outer ear that is the small muscle there, it spasms like crazy; it also started in February. It has gotten better, but it is so annoying, sounds like a clicking, and now I feel a bump in the area (I fear atrophy of this otherwise useless muscle? but because it is useless I am afraid I can't tell it is atrophied)
6. Sometimes I hear a ear thump, rhythmic, and it comes and goes not to often (I associated it with stress or high blood pressure)
7. My left foot is stiff, and I can't spread my toes out (only on my right), but I think I always was like this
8. Body wide twitches/spasms all the every day varied intensities

I also have no problems with weakness, no swelling speech issues, and I am 28 years old.

Apologies for my post; I am blown away by this communities kindness and generosity. Thanks to all of you for your help and I appreciate yalls input, my anxiety is driving me crazy.
God bless.

 

[ShiftKicker]

Hello-

Please make sure to read here: Read Before Posting. In it, you will read that symptoms that come and go or improve, sensory issues, things like swelling, sweating and bumps are not related to MND in any way. Please keep working with your doctor to figure out what the issue is, but ALS does not look at all like what you are reporting.

 

[lgelb]

Ear thumps/twitches can be signs of infection or a sinus issue, or even jaw clenching. If you are not adequately supported on your side but sleeping on it, that can play in, too. Could be time for a new pillow. Latex is good if you tend to burrow in.

Several of your symptoms, including bodywide twitching, speak to potentially poor sleep. You can track the stages of sleep and awakenings with a wearable. I would pay close attention to your O2 and pulse rate during sleep as well. I would also see a dentist to evaluate whether you need a bite guard to protect your jaw.

All in all, if you can bring some data to your PCP and dentist, I think they can help. There is no reason to think of ALS.

 

[BillCortez]

Thanks all! This indeed brought me some peace.

One thing that I forgot to mention (and apologies because I should have proofread my post to avoid this) was that my tongue, when I stick it out and flex it has a significant dip on the right margin and points straight-ish but to the opposite side of the perceived atrophy; this is also where I notice the tingling and the twitches that I can feel (maybe I just started to notice this after freaking out?). This, to me, looks like some kind of marginal atrophy of the right side, but when I don't flex the tongue, that is, I simply stick it out, the dip goes way on the right margin. I don't know if this is useful, but my tongue shape is pointy and triangular, so this might just be the anatomy; that is, the bottom part of my tongue flares out when flexed, and the top body with the taste buds mountains over, so it gives the impression of atrophy of the margins perhaps?

I will not post a tongue photo, but I do hope that this description is somehow suitable to paint the picture.

 

[ShiftKicker]

What was recommended before still stands. You list too much not associated with ALS. Please see your doctor for further exploration.

 

[BillCortez]

Thanks all. I went to my primary care, and they don't think it's ALS. I did a strength test and told them my history. However, I forgot to mention to them my constant jaw fatigue. Constantly, and I mean whenever I eat, my jaw comes super tired, and then somehow my tongue starts to feel tense (especially on the bottom floor of the tongue, which feels swollen).

May I ask if jaw fatigue, like I am describing ( that seems to come and go at times but persists throughout the day after I eat) a sign of maybe early bulbar onset?

 

[ShiftKicker]

Hi Bill-

If you could re-read the "Read before". Adding more symptoms to your list here after you've been cleared by your doctor speaks a bit more to your anxiety and still doesn't sound like ALS. If you wish your doctor to know you feel they've missed something, please go back to see them. What we've provided here still stands. It's very clear you are pretty worried about your health, but we can't keep reassuring you here or repeating "no, you list things not associated with ALS".

I will be closing this thread in the hopes that will encourage you to move on from a forum dedicated to ALS. Please don't open another. You will have to work with your doctor to track down what might be at issue.

Take care