Weird symptoms. Does it sound like ALS?

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Eugene88

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Hi Everyone,

I don't want to bother you with the endless rounds of the questions just wanna share my symptoms and hear what you think maybe anybody experienced something similar...

I'm 33, male. Appr. 3 months ago I started feeling the light 'weakness' on both of my legs. It didn't prevent me from doing regular staff just something I noticed. Then it was getting worse and better (it was kind if erratic). But 4 weeks ago it suddenly got worse. I woke up with terrible weakness in my legs it felt like I can hardly walk. A couple of days later it got slightly better. But I started feeling weakness in my arms. Btw the weakness I feel is in the upper part of my legs and arms only (proximal part)
Then I visited neurologist and she tested me - I have bilateral hyperreflexia (seems like I always had it) muscle strengths ok, no stiffness the to to MRI and EMG

MRI is clean as well as EMG (no spontaneous activities aan staff like that). I did one more EMG a couple of weeks later in other place for second opinion - it's clean as well.

The I visited 2 more Neurologists for the second opinion but they said it doesn't look like ALS - no negative signs (reflexes) strengths is '5' from legs and arms, muscles are not stiff, no clonus. But the symptoms don't go out...

After reading about ALS I got panicked and frustrated and fasciculations came.
Symptoms I experience now: feeling of weakness in the upper part of the legs (the distance I covered before is hard for me now), the same weakness in the arms and shoulders (hard to hold you arms above the level of the shoulders, hard to hold the cup), I can still do the activities like use my door keys, use the knife, tie the shoelaces but my fingers slightly inflexible. However a doctors haven't confirmed the atrophy I see my arms and legs got slimmer. Additionally my chin feels week and got slimmer as well (I can compare it looking at my photo year ago). Also my tongue feels heavy. I don't have a problem with pronouncing the words but it's kind if heavy and numb at the tip. Also when I work the tongue so hard it goes white in the middle but then when I relax it it gets back to normal (I thought that's because it's denervated and the blood doesn't reach some part of it)

I read the article before I posted it but it doesn't make me feel relaxed. The question:
1) does ot sound like the early ALS?
2) does it sound like bulbar outset the problem with the chin and tongue
3) does anybody experience anything similar?

Thanks in advance
 

Nikki J

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If three neurologists and 2 emgs have all said no ALS then we really are not going to say anything else. If denervation areas lost blood flow those of us who have paralyzed limbs would have them become necrotic but we don’t we retain blood flow and normal pulses

i think your best plan is to return to the doctor you like best/ trust most and let them follow you. If there are objective changes they will see them over time
 

Eugene88

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Hi Nikki J,

Thank you for a quick reply I really appreciate it. So does that mean the symptoms I mentioned above sound like ALS for you. I read that it is about failure not feeling but anyways whether it might look like the ALS?
 

Nikki J

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No I don’t. Not at all. However what matters is the opinion of doctors who have examined and tested you.

i told you to pick a doctor and get followed not because I believe you have ALS at all but because you have health concerns. If there is atrophy and weakness they will see it. They haven’t and I doubt they will but doctor shopping is rarely productive so seeing one person who has a baseline to compare is a good way to get an objective assessment of your perceived problems

answering your original question in my opinion ( which shouldn’t matter because you have seen 3 neurologists and I am just a random person on the internet

1 no
2 no
3 no one in my family or acquaintances with ALS
 

lgelb

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If you have anything wrong, it sounds more systemic than anything. I agree with settling on an internist who can follow you and monitor your condition, and suggest additional testing as needed. If docs don't see the atrophy you do, keep up with your exercise but let the notion of atrophy go and see how far that takes you.

Nothing you have said suggests ALS.

Best,
Laurie
 

Eugene88

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Nikki J, Igelb,

Thank you for your feedback I really appreciate it! I'll stay with just one doc who is gonna be watching me
Update on the symptoms that just came up: the weird shaking of the limbs while the opposite movement by which I mean when you for ex. lift you leg up (it feels ok) but then you move it down to the initial position it starts shaking. It's like the shakiness not under the load. Does that still point away from ALS or no?

Sure, I'll ask my neurologist but the next visit is going to be in a month...so if it rings a bell for you please let me know.

Wish you all the best
 
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affected

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Hi Eugene
Please read here really carefully

This answers you really clearly and means our members don't have to answer the same things hundreds of times each month.
Work with your doctors, but truly you have been repeatedly told you don't have ALS symptoms so please, stop trying to find one. Shakiness is NOT an ALS symptom.
Continuing to ask here when the answers are in the post above is not really appropriate when terminally ill people need our support.
 

Eugene88

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Hi affected,

You are right sorry for bothering the members. I'm just trying to understand the nature of my 'non clinical weakness' that I feel in my limbs cause docs can't explain it in any way - all clean. That's why I'm just trying to figure out how 'sudden' the lost of functions is after reading READ IT BEFORE POSTING. If people feel any sort of weakness (maybe not proved by docs) before it loses its function

Anyways, no more questions...sorry...and let me at least express the moral support to all who are affected by this disease. Wish you the best.
 

lgelb

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If you experience loss of function, you would not be reading stickies trying to find how sudden that would be. It would be lost, and you would know it. And so would your doc.
 

Eugene88

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Hi again,
I have a follow up question. Like my neurologist suggested after the exam provided and emg's (that were clean at the moment) I reached out to phsycotherapist who diagnosed me with the depression and enxitey. She prescribed AD's and other meds and we started phsycotherapy. After a week of taking the pills and doing exercises and feel way better and my perceived weaknes seems to faded out.
But the fasics are still there. It's mostly in my left calf (sometimes in the right one).
I've read that bening fasics are usually spread around and they are literally everywhere but not concentrated in one place. That still makes me slightly nervous.
Is that true about the bening fasics being everywhere usually? Thanks!
 

Bestfriends14

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Please continue your work with your psychotherapist. You have read the sticky, you have heard from members here, and you have been told that you do not have ALS via clean clinical exams, lack of symptoms, and clean EMGs. As such, further questions here are no longer warranted, For your own mental well-being, it really is in your best interest to move on and, again, keep working with your psychotherapist.

Good luck to you and please take care.
 

lgelb

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Benign fascics may focus on one or a few places, or be widespread. There are no tea leaves to be read in where they are.
 
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