27 male with real symptoms

[Zach2]

Hello everyone. I am 27 male and my suspected symptoms are: constant calves and thighs fasciculations that I mostly can't feel, left thigh atrophy (my left calf also became bigger, compensation?), some weird weakness in my left leg and arm, stiffness in my left side of neck and creatinine drop from 90 to 70 in less than 2 months.

My left thumb (thenar) is meaty, but still smaller than my right that is very meaty. My left hypothenar is bigger than right and I don't remember if it was like that before. One month ago, my left bicep was stiff and became bigger in circumference than my right one, looked swollen and this passed after 5 days.

My other, (un)related symptoms are: persistent unexplained hematuria (clean CT), mucosy and more frequent stool with positive fecal occult bleeding test, painful left calf that lasted 10 days during rest (two weeks ago, normal calf doppler ultrasound, GP suspected vascular problem), left knee clicking when extending leg, body hair loss, slower reaction time, kidney cysts and forgetfullness.

My first symptome that made me visit the doc was hematuria, it was in June. Related or unrelated, I don't know. In the May I had few days of fever, headache and stomachache. My anxiety is very high and I am scared to talk to my family, my younger brother has CP and I can't let myself not be there for them.

Physically, I can do like more than 90% things that I could before (rope skipping , run, sprint, squat, handgripping 60 kg for 30 seconds hold with both hands, toe-heel walk, pretty fast walking, push-ups etc.), and my only issue are small lateral jumps off my left leg that I clearly suddenly do better off my right leg, like my left leg became heavy. But again, my left thigh atrophied and is 3 cm smaller than right while left calf became bigger than right.

I am Covid vaccinated, I was exposed to mold as it was present in my room for 10+ years, I also remember that in April I had for 5 days on my right quad some red-blue ring that looked like bullseye rash without center, but it was raised and donut shaped, like trauma (that I don't remember) induced. No fever or other symptoms until two months later.

In my country incidence is 1.11/100.000, and I knew just one man from my place who died of ALS at 60. Sorry for long and probably confusing post, I will of course ask my GP for a neurologist appointment, just had to vent somewhere, to ask for advices and to be prepared if this looks like ALS case. Thank you all in advance

 

[lgelb]

Of course, you should follow up things like blood in your urine and stool, not just let someone dismiss them because you have a clean CT, but these are not related to ALS. If you described the bullseye to your GP, they might test for Lyme.

It is not unusual for one leg to be stronger/bigger or weaker but still bigger. In ALS, the calf would not get bigger because your thigh got smaller. Some bodywork might do that.

I can find no concern for ALS in what you say, but if you are bleeding internally, you certainly need a diagnosis and bleeding can make you weak generally. So if your GP is not following up with ordering a colonoscopy and more tests of your urinary tract, I would find another. As you say, you want to be there for your brother.

 

[Zach2]

Thank you very much for your reply. I am aware that internal bleeding is not common symptome, however I thought that maybe when I noticed blood in urine I stressed too much and something triggered ALS symptoms. I am not thinking about blood in urine and stool anymore, that's how much I am stressed about the big bad. What you wrote about calf situation reassured me a little bit. But still, there are no changes in my lifestyle that could cause any of that. Before noticing bloody urine and stressing out about other symptoms, checking my body from head to toes I was not at doctor for 5-6 years and had no any kind of weird symptoms. I know that I have health anxiety, but those symptoms that I wrote as "related" are really concerning in my opinion

 

[lgelb]

Not everything that comes your way is a result of lifestyle. Bloody urine certainly isn't, and it's a lot more important in a health context to check that out than to keep measuring your legs.

Anxiety, not common sense, is setting your priorities. I hope you seek counseling and make a better plan than pursuing neurological diagnoses when a more urgent issue is staring you in the face.

 

[Zach2]

Okay, I don't understand and with all respect mostly can't agree. I am presenting clear ALS symptoms

(1 constant calves and upper leg fasciculations on the different muscle spots that can be provoked by hammer punches who leaves bruise on the punched spot - no widespread ones and Magnesium and hydration not helping,

2 measurable assymetric left side atrophy from neck to knee with compensatory left calf hyperthrophy, 3 brisk knee reflexes, 4 blood creatinine drop and mcv raise, 5 stiffness of both arms and one leg, 6 coughing and deeper voice, 7 stiff left side of neck, 8 brain fog, 9 fatigue...).

It all started with hematuria and freaking out about it 2.5 months ago, I never noticed anything unusual with my health before. Okay, I am 27, have no known genetics and clinical weakness but everything is slightly weaker than it used to be and I feel it's just matter of time when my arm is just gonna stop working.

Left one used to felt blocked from the armpit down two times last week for 10 seconds during rest. Would you say to the cardiomyopathy patient that he doesn't have it even if he has clear symptoms but also raised glucose just because raised glucose is not cardiomyopathy symptome? That's what I feel here.

Can't people have two or more diseases at the same time? Yes, I have blood in urine, body hair loss and health anxiety but who says that it's related to my neuro symptoms? I'm literally reading every post on this forum and seeing people presenting twitches with weakness and/or atrophy while you are telling them that those are not ALS symptoms? Then what is, toothache? Can someone please join the conversation?

 

[lgelb]

I don't think you appreciate just how many people post here with pretty similar lists as your 1-9, reflecting perhaps some misdirected reading about ALS as well as troubling physical manifestations. If we had to pick the most common etiologies, these are (1) anxiety/poor sleep and/or (2) post-Covid syndromes, which can include blood clots, bleeds, organ damage, strokes, and heart attacks, for starters. And lots in between.

If these were "clear ALS symptoms," there would be a lot more ALS in the world. Fortunately, it's a fairly rare disease, and if your GP were concerned for it, you'd not have to ask for a neurology referral.

On the other hand, there is not as wide a spectrum of causes for hematuria (stress is not one of them, FYI), to which your kidney cysts may or may not relate. When I hear of someone not actively pursuing something worrisome, comorbidities notwithstanding, I will point it out. Re your example, I'd certainly recommend that someone with cardiomyopathy and elevated glucose address both, as would anyone.

But those are pretty easy to diagnose, and actually, florid ALS as you think you are describing but are not, isn't that hard, either, which is why I'm able to suggest that you loop back to something much more likely to affect your immediate health. I'm not suggesting that you ignore your other issues, just not to panic about them as regards ALS.

Feel free to stop back by after you see the neurologist.

 

[Zach2]

I can't go to neurologist and to enroll EMG as I can't cope with diagnosis. As my symptoms are clear, I don't see any other option:

1) constant fasciculations in both calves
2) bigger left calf than right but paradoxally bigger right thigh than left, bigger fat pad on right back thigh, bigger right upper abs than left visible when lying down, lower left nipple than right
3) consistent productive cough, deeper voice and not being able to take a deep breath
4) visible pulse in abdomen despite having belly
5) scalloped tongue
6) decreased strength and coordination in left leg but I still can jump as high as before
7) shaking hands
8) hyperreflexia in knees
9) hyporeflexia in arms
10) low blood creatinine (69, low limit 62, it was 90 two months ago)
11) brain fog and fatigue, I can't think properly, forgetting everything
12) swollen left hand hypothenar eminence

Only "good" things are that I don't see thenar wasting and that my overall strength is like 90-95% as usual.

I also have unexplained painless gross hematuria and body hair loss that lasts for 3 months, those are symptoms that made me went to doctor in the first place. My anxiety is over the roof and I am very seriously considering ending my life.

 

[Zach2]

I also had my first ever cramps in left calf this morning, having stressfull life and living in a moldy environment. Had bad fever in early June also, otherwise never sick

 

[Nikki J]

PLEASE GO TO YOUR LOCAL EMERGENCY ROOM. YOU HAVE SUICIDAL THOUGHTS AND ANXIETY IN SPITE OF BEING TOLD YOU DO NOT HAVE ALS SYMPTOMS.

Telling you again is not helpful I suspect. It is also cruel to post this to people who are dying and have no choice. You do. Get help.