Old 03-26-2014, 07:42 PM #1 (permalink)
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Default Symptoms Progressed

Hey guys,
I haven't been on here in a while and since my last post, my symptoms have progressed, just wanted to know if anyone had similar symptoms.

I have been going to a neurologist and she hasn't been able to find anything but I can't hold air in my mouth very well. She's sending me onto a special clinic now, but it takes months to get in there.

Going back to where it started, It started at the beginning of last year January 2013, when I would pick something up my right hand would shake and my fine motor skills decreased (Only on my right side, including my typing on my right side.).

I went to the doctors and they checked for carpal tunnel and things like that, never came up with anything.

So the doctor sent me to a Neurologist, which took me a little while to get into. In that time, The right side of my face and my right leg were now affected. Not with a Tremor, but this is where it gets kind of hard to explain. So i'm right hand dominate, it felt asthough that had swapped to the left side, I would begin to pick up things with my left, catch with my left, kick with my left. Like my right side wasn't working properly.

Neurologist sent me in for an EMG of my right Arm and Leg. (Came up clean)

Since then, I started to gather drool in the right side of my mouth, and my tongue was thinner but only on the right side and it always looks scalloped.
My tongue quivers, but only when i'm trying to poke it out slowly. I get to about where my bottom lip is and it vibrates.
Same with my jaw, the bottom of my jaw vibrates / quivers when I open it slightly. I can hear my teeth chattering.
I had some issues with slurring words, but I don't seem to notice it anymore. And Now I have swallowing issues. I don't understand what's going.

I requested an EMG on my face because I've heard that if you do an EMG on the lower limbs it doesn't show bulbar onset of ALS.
But the doctor said she wanted to do that as a last resort? As much as I hate the test, I'd rather get it done.

I've had blood work done (I take it for muscle break down in the bloodstream?)
Brain MRI (Clean)
Lower Limb EMG (Clean)

I workout at the gym 5 days a week and i'm still able to pick up my regular dumbbells so no significant strength loss, but my muscles lag behind in growth on the right side again.

I know ALS can present differently in everyone, but I would be very appreciative of any feedback you could give me.
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Old 03-26-2014, 08:34 PM #2 (permalink)
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Default Re: Symptoms Progressed

As someone who has been prescribed riluzole, and been classified as possible ALS, waiting for the other shoe to drop next month, do not chase this disease. It's bad enough when it finds you. Take the no from your neurologist and run with it.
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Old 03-26-2014, 09:02 PM #3 (permalink)
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Default Re: Symptoms Progressed

Anyone who goes to the gym 5 days a week and works out with dumb bells indicates they are very focused on their physique. Maybe, just a little, you're too focused. Just a suggestion... give the gym 5 days a week and the dumb bells a break until your next Neuro appointment and see how things go. Maybe just walk for an hour each day to maintain tone. If you're drinking energy drinks... give them a break too. Check and see if your body wants a little vacation. Hope you don't need that 'facial' EMG.
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Old 03-27-2014, 06:54 AM #4 (permalink)
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Default Re: Symptoms Progressed

Jaw tremor, slurring words, scalloped and tremoring tongue, fine motor skills decreased, loss of muscle on one side, are all this confirmed by a neurologist, or are these things you experience subjectively?

If you had actual clinical weakness, this would be picked up by a neurologist, if it was weakness in the bulbar region, that would be picked up as well.

I am no doctor, but I would ask for the following, if it has not been done;
- Thyroid blood work and urine test
- Lyme test

The more we focus on our bodies, the more it tremors, twitches, stiffens up. The mind is a powerful thing. If your second EMG shows nothing, and nothing else is found, I would start thinking along the lines of health anxiety.
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Old 03-27-2014, 12:29 PM #5 (permalink)
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Default Re: Symptoms Progressed

I would say that if you can work out 5 days a week you probably do not have ALS. It might be a good idea as suggested above to back off he 5 day work out schedule and try walking. When I had my EMG the neuro. did both legs, both arms and my tongue. Before my diagnoses I could hardly walk a mile with out having to rest for 10-15 minutes.

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