30 Male, Symptoms Getting Worse

[nomanz]

Hi, I'm 30 and worried I may have ALS.

My symptoms:
Extreme tongue fatigue when chew (11 months)
Body Wide Fasics (20 months)
Post Nasal Drip (5 months)
Ear effusion (3 months)
Pulsatile Tinnitus (3 months)
Numbness and limbs falling asleep fast (12 months)
Knee pain

My main concerns are not the twitching, it's the fact I have things that can be tied to MND like Eustachian tube dysfunction that is causing my ear effusion and even possibly pulsatile tinnitus. Also my relatively new symptom of post nasal drip. When I look up Eustachian tube dysfunction MND is one of the few things that pop up. I also hear clicking in left ear when swallowing.

I am worried my knee pain might be associated with weaker muscles straining my joints.

I know Post Nasal Drip and even the Ear effusion/Pulsatile tinnitus can be other causes, It's just strange all these symptoms are popping up only months apart from each other that can also be linked to ALS.

Something I should add, twitching started 1 month after I had a bad covid infection, my girlfriend also had that same infection and developed most of the same symptoms I listed (minus the ear issues and tong issues). Her twitching started 1 month after mine. She also has an odd rhythmic up and down bounce in her leg when she is sitting at the toilet and has her toes pressed down the floor, but her heels are raised and her leg bounces up and down rhythmically.

I did have 1 clear EMG 12 months ago, but I will have another one now as things seem to have gotten worse.

I know this is far fetched and I will be called crazy in so many languages, but I truly believe either covid caused my girlfriend and myself to have ALS, there are studies with covid and neurodegenerative diseases.

My other theory, which I hope is rather the case, is that covid has just caused us to have neurological damage, that will be treatable and not necessarily a death sentence. Maybe some new motor neuron disease that progresses much slower (hopefully) or can be cured, or goes away.

 

[lgelb]

None of the ENT stuff, all very common, is specific to MND. "Could be linked to" isn't "a red flag for." And each of these features is linked to each other in far more common ways, like allergies, sinus infections, and more. If these problems can't be addressed by your PCP, it's time to see an ENT, not worry about ALS. Likewise, if you have a knee problem, you see an orthopod that knows knees.

Yes, Covid can cause permanent [so far until we figure out how to treat it] damage to any major organs, including the brain. But knee pain is not an early ALS thing. The muscles stop working. And you haven't presented evidence of neurological damage. And rarely do bf/gf have overlapping Covid complications a year plus out, least of all concurrent ALS onset.

Leg bouncing is not uncommon either -- it can be a benign tremor or stress reaction.

Fascics mean nothing without impaired movement, especially those that are bodywide.

What does your PCP say? When were you last there? Same question about your gf, obviously.

All in all, I don't think either of you has ALS or anything like it. You're in the wrong place, a wonderful thing. If your PCP is not addressing your issues and making appropriate referrals, find another, even starting with video if you need to. The anxiety + fatalism you're emoting isn't a recipe for a happy life or relationship.

Best,
Laurie

 

[ShiftKicker]

Here are some links to Covid information you might find interesting: Covid19 and Neurological Symptoms

There seems to be more research published each day about the ways COVID19 is affecting people, sometimes even long after acute infection. It's a bit of a stretch at this point to assume COVID "gave" you both ALS. But, as Laurie says, while you are in the wrong place here, you should keep working with your doctor to help you with your current issues.