21 male w/muscle Atrophy

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Damunch

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Hello, I'm currently looking for insight about what could be wrong with me. I have been getting progressively worse for about 14 months.

Clean bloods, Clean MRI of full spine and brain.

Started with a tremor in my fingers and clumsiness. This tremor spread to my whole body eventually including my penis and legs. At rest my body constantly tremors - slow tremor from the core and makes me sway back and forth. Nerve pain, extreme psoriasis and some viltigo - all I'm the right side of my body. Twitches, Right side of my body again mostly my right leg. Muscles shake when tensing throughout my whole body. About 6 months ago I noticed my right leg feeling weak.

Atrophy on my right, The muscles are very soft there and I can grab a chunk of my leg between my fingers - this is the most worrying, The softened muscles on the right side.

Lots of muscle pain, Aches & burning on the right side when walking even a little or going up stairs. Jerking of my right leg (recent), my leg started jerking outwards.

Right eye pain, fatigue and drooping (I think)

I have seen a neurologist and he found I had brisk reflexes, monoclonus and Hoffman sign all bilateral. He didn't see the atrophy because my trousers were on during the examination and I didn't explain my concerns but he sent me for an MRI which was completely clean.

I asked him about ALS and he assured me that I didn't have it but hasn't given me any other explanation other than anxiety which I disagree with - since when does anxiety cause wastage.

He doesn't want to do anymore tests and I don't know what to do, I'm extremely scared. What do you think this could be?

I have also developed a horrid cough and a feeling of mucus stuck in my throat which has persisted for over 6 weeks now. The main fear is the muscle atrophy in the leg though, When comparing the same movements between legs the left is fine and muscular and the right is just like jelly. When I brush my teeth I just feel my right leg flopping back and forth
 

ShiftKicker

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Hello-

If you could read this: Important - READ BEFORE POSTING! Answers to common concerns about possible symptoms

It outlines why what you report is not consistent with the pattern of symptoms that are associated with ALS. It's not clear what might be the problem, but it's not ALS. It's important you keep working with your family doctor first and foremost. It's clear the neurologist does not think your symptoms are neurological in nature, so you'll have to circle back to your doctor to discuss what your next steps should be. This would be the time to point out what you think is atrophy- as it can only be really identified by your doctor and may give them some indication of what path to take next.

Please take care.
 

Damunch

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Hi thanks for replying, I did read that and it says about atrophy, weakness and inability to contract muscles being the hallmarks of ALS, which I seem to have. Is there anything that points away from this condition?
 

Nikki J

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Lots of muscle pain. Eye pain, fatigue and drooping. Feeling weak. Jerking.
 

Damunch

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Hi, I should have clarified. The pain only happens when I'm walking or standing because the leg is so weak that it aches violently and I believe the jerking is due to spasticity/hyperreflexia on the one side. Also every joint on my right side clicks and I feel like I'm choking on my own saliva which has caused me to cough for over 6 weeks now as well as burping.

I know you guys are not medical professionals, but in your experience of being on the forum what else could this be?

Im 21 and have text book ALS symptoms and progression for almost 12 months and am terrified.

And for the weakness & atrophy, Yes I can still use the muscles but they are drastically smaller and jellylike on my right side and get tired worryingly quickly (seconds) whereas left side is as strong as ever, please help

(Closed for multi)
 
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lgelb

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What you describe does not resemble ALS. It doesn't present in all those areas with those features.

But I would go back to your GP, even if by video, including your legs in the exam. Your GP is perfectly qualified to comment on whether your muscles have significant atrophy or weakness, whether you should see a physio, what the next step should be.

You could have a virus or other subacute condition that is causing these feelings. But read this carefully: one thing you don't have is "text book ALS symptoms and progression." So there is no reason to be terrified. Meanwhile, you might re-evaluate the surfaces that you sleep and sit on, and perhaps video your sleep to check out your breathing and movement. If there are any alarming snippets, you can share those with the doc.

Best,
Laurie
 
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