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p1xel

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Weakness and muscle atrophy & other.

19, male. A weakness developed in my arms and legs few years ago. It was mild and only at times first, now it seems to be semi-permament, varying from low, almost unnoticeable, to extreme. Other symptoms are various pulsing, tingling, burning, they aren't permament and happen with varying rarity. It's worth noting that i get chest points irregularly as well as some breathing problems, as for other symptoms, i could probably write a whole book.

I have around 45-60 degree scoliosis, neck area mri showed only bulging disc on c4-5 c6-7 and roughed bone edges if i remember correctly. I also have a small heart impairment, mitral regurgiration type II. Nasal septum is mildly curved. And there's some unknown thing on my head, maybe seborrheic wart as the general physician said. I've had it since I was born probably. Blood - low magnesium and iron, CT clean except for lordosis.

Not long ago i did ECG, EMG, EEG, boreliosis(ELISA?), chlamydia and was told there's nothing wrong. EMG was done for polineuropathy/muscle dystrophia - results: EMG without signs of myopathic or neurogenic damage. Non-specific increase in the percentage of polyphasic in the distal muscles (tibialis anterior right and interrose I right) - I hope i translated that right...

Also worth noting that i didn't exercise for like 5 years, barely moved for last ~1.5 and my posture is terrible. I did some spine exercises for ~1.5 months until i started getting chest pains and was too tired to do them(too weak?...)I could try swimming or something but judging by everything's that happened i doubt it will do any good.

My arms are thinner than my forearms, that's where i feel most of my weakness, followed by forearms and just over the ankles. I can feel them when lifting anything, i can feel weakness even when i'm brushing teeth or writing on a keyboard. Doctors are telling me i'm fine but i feel that i'm getting weaker and there's not much weaker i can get before i'm a vegetable. Or i'll lose my sanity first. Can this be SLA or SM? Maybe a bone issue? Or could it really have anything to do with neurosis or lack of exercise(unbelieveable?)?

Sorry for the wall of text, i'm at a loss, seems like my neurologist is done with me and my time is running out. I don't even know which way to turn with this...
 

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Re: Weakness and muscle atrophy & other.

Rehabilitation exercise takes time. The beginning stages are uncomfortable, to say the least. I'm not seeing ALS or any other motor neuron disease. People with more knowledge will likely chime in. If you have barely moved for the last year and a half, I'd guess that is your biggest contributor to the issues you are experiencing which, again, don't appear ALS-related in the least. I would recommend a good physical therapist and a slow but constant introduction to exercise. Also, perhaps see an orthopedic specialist to evaluate your scoliosis; cardiac specialist to evaluate what is a safe exercise regimen, and I would immediately address your magnesium and iron deficiencies.

You do present with some health issues, but ALS or any other motor neuron diseases do not appear to be one of them.
 

p1xel

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19, male.
So, I posted here once. Since that time i became much weaker, i have muscle atrophy all over my legs and arms, lifting anything is tiring, my legs feel weak when i'm going down the stairs, i can feel my muscles pulse all over my body often, and today i feel like i can't eat.
Basically it feels like my throat is full, feel nauseous, don't want to force myself to eat. I've felt some slight problems with my throat here and there, but now its on a whole new level. Even when drinking water i can feel it, i'm not choking, but it feels like food gets stuck in my throat, or maybe it is getting stuck. Like it's barely moving down and i have to force it. Is this typical for ALS?
I've already scheduled an appointment with another neurologist. But there aren't any ALS centers in this country, and i don't know if our doctors even heard of such diseases. I only have radiculopathy from spine(scoliosis), EMG around 3 months ago didn't show anything conclusive(no nerve or muscle damage).
I feel like i'll go crazy if this continues. Any input?
 
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p1xel

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Update: Seems like I can eat somehow, but any "tough" food seems to give my chest a weird dull/sharp ache + light face muscles pain. Seems like the issue is some deeper muscle in the throat at first glance? This doesn't look good to me either way. I feel like too many things point to a neurological disease, while tests for less dangerous stuff always come clean...My tongue seems to be moving when i keep my mouth open too, but i have no idea about this.
 

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Definitely a problem, but doesn't seem like ALS. When is your appointment?
 

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Well, i can go every tuesday/wednesday/thursday without registration, but i gotta pay for it. If I were to wait normally while having ALS I would probably die before getting a first appointment due to the queues. The thing is, my last neurologist seems pretty sensible for once, i don't doubt her ability but I feel like since my spine can give all symptoms in the world, they will just keep writing it off as that - as long as they can ignore it. "I don't know write as the diagnosis" doesn't calm me down...
Although my spine is really badly curved, there are no known other serious changes in the spine. So I'm stuck with radiculopathy. Now i'm left with a visit at 10 of June just to "show up" for whatever reason. I feel like I should get a second opinion at least, but it's a lottery here, i could get something out of the visit or be written off as a hipochondriac if they don't feel like helping me. Supposedly there are some doctors who are knowledgeable about ALS, but the process to even get to that kind of clinic would take endless dollars and efforts, not something I can afford.
If it's not ALS then there are hundreds of other things I should try, i guess.
I feel like I'm close to the border where my diagnosis is moot, since my weakness seems to progress for whatever reason and doctors don't seem concerned.
Sorry for the wall of text.
 

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You write American English pretty good for a Pole. Where are you from?
 

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I'm from here - Poland, but i spent years on english sites and internet so I guess my written English should be pretty decent. I'm worse at spoken English, even though it's not a problem with much on the internet, regular conversation would be difficult because of accents. It would be easier with accentless pronounciation.
 
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Atsugi

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I wish you luck on getting all those problems solved. It just doesn't seem like ALS, to me, especially in a 19-year-old.
What do you mean, you haven't moved in 1.5 years?
 

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Well, not like I didn't move at all, but i didn't do any exercise or anything involving much strength. I was never a fan of sports so i didn't do much in a few years. Still, i find it even less likely that this could be the cause than disease X with 1: 100 000 probability. Tons of people do bare minimum of movement and never even develop muscle atrophy, much less look like a skeleton.
 

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Understood. Here's a little perspective: When someone says they haven't moved--on an ALS website--we take them quite literally.

If you look like a skeleton, you should see your GP medical doctor very, very soon. Lots of reasons for that, and some are nasty.
 

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Certainly. Come to think of it, if it's not neurological, then it's likely there's something seriously wrong, like cancer. Judging by the time of illness, it would be terminal now for sure. Ironically, that's still a better diagnosis than ASL.
I'm super underweight, though i've been this way for quite some time, and i'm not losing more weight. Not many other particular symptoms. I've got a feeling i'm not getting off the hook this time, and i'm rarely wrong.
But I won't bother you more for now, i suppose.
Edit: Well, i'll visit another neurologist for sure too, since there's something going on with my speaking/breathing/talking, hard to pinpoint now, my tongue is tingling...at this point, i'll gladly take cancer diagnosis.
 
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p1xel

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Update: I visited another neurologist. According to him it's probably muscle dystrophia of some kind. I'm ****ed. Better than ALS but still not good enough.
Neurologists play the waiting game with me for now. One says it's nothing for sure, second says it's dystrophia, and i'm supposed to wait at least 3 months for another EMG. I wouldn't exclude ASL since we are just guessing here + nonspecific emg changes....
Going nowhere fast. Well, beats me...this whole stuff is over my head.
 

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The doctor's guess is better than anyone else's.
 
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