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Lanebryer

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Oct 8, 2012
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Learn about ALS
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State
virginia
City
gainesville
Hello everyone - I have posted here before (quite some time ago), but I'm still having some doubts/concerns. I know ALS is exceedingly rare at my age (let alone any age), but I'm starting to have a hard time believing that my symptoms could be anything other than early ALS or MS.

Symptoms:

1. The left side of my jaw constantly aches - it nags at me every day, and has done so for months.
2. The left side of my neck is usually quite stiff and bothersome as well.
3. When I'm at the gym lifting weights, my left arm will give out and tighten up significantly while my right arm is still ready to keep lifting.
4. The left side of my mouth feels difficult to move compared to the right - I have to make a more conscious effort to move it when I'm speaking.
5. My voice seems to get hoarse more than before. I very occasionally bite my tongue.
6. I feel as though I cannot open my left eye completely.
7. When I run, it is my left knee that starts to hurt and acts up.
8. If I flex my left leg, my calf and glute both feel very tight and stiff.

I think by now you can see the connection here - all of my issues are isolated to the left side of my body. I have seen two different neurologists several times. I have had MRIs of my spine and neck (without contrast), and I had an EMG 3-4 months ago. The neurologist saw nothing of note except an ulnar lesion of my left arm which she said was quite common. She did not elaborate further. Upon doing some research, ALS is a differential diagnosis for having an ulnar lesion. The EMG was primarily left arm, left leg, and back. Nothing facial, nothing in the neck. At this point I want to trust my neurologist very badly, but the consistent symptoms I have on a daily basis makes it very difficult. I was hoping some of the kind people on this board could provide some insight into my symptoms, and whether they mirror any of your experiences with this terrible disease.
 
I couldn't find an "edit post" option, so I apologize, but I feel I should add that I specifically asked my neurologist, "Are you saying there's not sufficient evidence to diagnose MS or ALS at this time, or are you saying I do not have MS or ALS?" She responded quite confidently, "It's not ALS or MS". That being said, doctors are not infallible, and every day that I live with these pervasive symptoms weakens my faith a little bit more.
 
Thanks for your input. I'm sure that it gets tiring to be a person with this disease reading every Joe Schmo's complaints and concerns, but I do appreciate the response.
 
what would make you think any of you us could (or would) over ride your Dr?
Do you not like what your Dr said?
 
What would make me think you could "override" my doctor? Nothing. Was simply asking if anyone with the disease had symptoms similar to mine. Not to mention that hearing "those symptoms don't sound anything like ALS and your doctor says it's not" is still more reassuring than "those symptoms sound EXACTLY like ALS but the doctor says it's not." Of course I like being told that a doctor doesn't think I have these diseases, but on the other side of the coin that means I'm sitting here with symptoms that make daily life difficult and no answers as to what's causing them. I was merely hoping to see what people thought of my symptoms.
 
You posted ("I have seen two different neurologists several times.") Think about that. Try giving the gym, lifting weights and running a break for a while and see what happens. Millions of people who have never been to a gym, lifted weights or run frequently have lived to ripe old ages. Also, if you're drinking these new fad energy drinks... give them a break too.
 
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