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carlogio

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Hi everyone, I've posted a thread before about my symptoms and wanted to ask for more advice. My heart goes out to anybody affected by ALS. I'm male and 22 years old.

Recently I've been very concerned with the loss of muscle in the area between my thumb and index finger in my left hand. It's now turned to a small ball that I can flex and the loose skin in the space the muscle used to be. The reason I noticed the difference in the muscle in my left hand is because I compared it to the same on my right hand, where the muscle was much, much bigger and stronger. This also has led to muscle being lost in my bicep in my upper left arm, and it's noticable. It looks like a grill or something where the muscle has depressed and I do not have this in my right arm. It's new. I was anxious about this and noticed whenever I try to exercise with my left arm, it shakes, and gets tired very easily. I have definitely lost strength in my left arm too.

So I had an EMG recently to try and ease my concerns, as I also noticed my tongue was jumping about strangely and other muscles were twitching and fasciculating without touch. The doctor did not test my tongue as he said I was talking fine and refused to.

The doctor found nothing wrong with my muscles, so that was a relief! I was ready to move on with my life and try and get on with things.

BUT I have now noticed the muscle mass between my thumb and my index finger on my RIGHT hand is now doing the same thing as the left, and has got very small. Also my little fingers on both hands don't work well anymore, they are stiff and I'm finding it hard to handle small objects.

My question is this... would an EMG taken from one side of the body ignore any problems on the left? I'm concerned that as I was only tested on my right hand side a few weeks ago.

The neurologist also said I shouldn't worry, that my EMG was normal, that my MRI of head and spine was normal, that my bloods were normal, but my body is STILL twitching, my left arm is WEAK and shakes with any exercise (I can only manage 3 or 4 push ups! before, I would do 10-20!) and now my right hand is doing the same.

I'm also still experiencing mystery symptoms (at least to the neurologist) not connected to ALS -- ringing in my ears, severe light sensitivity since December, and a permanant tremor. Put this on top of a hole found in my right retina and my stress levels have hit the roof.

Should I seek a second opinion? The neuro didn't even look at my muscles properly and I assume just thought I was worrying over nothing. I've pushed my work, friends and family to the limits in regards to my recent problems and they are sick of it. I am too.

What should I do? Thanks for reading.
 

fmarino

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Hello carlogio

I think you should go see another neuro but it doesn't sound like ALS . . . especially with your other symptoms. Another note for you to know: ALS usually doesn't present with resting tremor. It sounds like you have some type of peripheral neuropathy (very treatable).

How long has this been going on with you? Were the symptoms sudden? Are you in any type of pain . . . especially neuropathic pain (i.e. burning, tingling, wrenching)? Could you give us a little more of a history so we can help you more.

P.S. ALS in a 22 year old is EXTREMELY rare.
 

Blizna

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Yes, I agree with Fmarino, this sounds like some kind of neuropathy. In 22 is ALS really absolutely rare.
 

carlogio

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Thanks for your replies.

All this started in December when I had a scary time with my hands losing feeling for around four weeks and my legs tingling / feeling tight like I was exercising them when I was not. This was when my vision changed and my body would twitch and shake. I then lost a lot of muscle in my legs, my arms. I'm also sleeping 12 hours a night (this is the amount I need just to feel normal) and I know this is too much.

My eyes have also developed dark bag like circles under them and I never had anything like that. I've been prescribed (surprise, surprise) anti-depressants and I've been taking them for nearly two months now, but I don't feel like me and my energy levels are so wrong. I can sleep for 12 hours without waking and then go 7-10 hours before needing to sleep again.

My biggest concern was ALS (and I suppose still is) and I've put off even visiting this forum because I'm trying to just get on with things, but I feel so very different since December and nobody can tell me what's wrong -- just a wait and see attitude. This worries me because what if my muscles / tremor / strength gets worse before anything can be done about them. That's why I was wondering if an EMG can sometimes not be conclusive.

I can't carry on telling my family and friends what's wrong as they are sick of it. They want me to move on but with the ringing in my ears, the light sensitivity, all the floaters I'm having to cope with in my right eye (My left eye has been pretty much useless since birth) the weird twitches, the muscle disappearing and my strength getting worse, my excessive sleep, I can't just seem to get back to normal and it's only a matter of time until this really affects my job.

If I could only put some new muscles mass on me, I would feel better, but no matter how much protein I eat, how much healthy exercise I can do, I can't seem to, and that really worries me. I never had an issue with putting on new muscle before all this.

Basically I don't know what to do, who to turn to.
 

wright

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Hello Carligo

So am I understanding this correctly: you had problems with muscle atrophy in your left arm and your neuro did an EMG on your right arm? If so . . . WHY?! He should have done it on both arms . . . at least!

I think you need to go get another EMG . . . not because I think what you have is ALS, but it will help determine what you do have. Peripheral neuropathy sounds like a good bet to me. You're not going to be able to add muscle to a muscle that is denervated because of the neuropathy. You will actually make it worse if you stress the denervated muscle too much.
 
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