Numb Tongue Question

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minnerhead1

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Aug 30, 2012
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Learn about ALS
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US
State
Missouri
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Lebanon
Does your tongue actually go numb with ALS? Also do anyones muscles "pulse" with ALS. Mine feel like they short out. I'm strong and can lift anything I want to but my muscles are very shaky and are getting worse. I do have cramps also. If I try to do a sit up my stomach muscles shake me to death like they are cutting out. This is over my whole body. Does ALS affect the whole body or does it start with one body part and move on?

Thank you.

Steve
 
ALS is not sensory, therefore no numbness. ALS does not start with the WHOLE body.
 
Minnerhead,

Please listen to CJ. She's correct. ALS li mb on set starts with one li mb dis tally and works its way up. Mine started with my right foot and then with my left hand. Bul bar on set is different.

There are thre ads here that would be ben e fi cial rea ding for you. Please take the time to read them.
 
Have you been to a doctor about this
 
Numbness in the tongue, while not an early ALS sign can be serious. You need to see a doctor. Soon, if it's persisting. Did you have recent dental work?

One of the causes can be a stroke, so nothing to mess around with.
 
Thank you all for your responses. I have been to a neurologist and 4 times and I've had 2 MRIs and she didn't see anything. She says she doesn't think it's ALS, Parkinsons, MS, but she said she is unsure what is going on and want's me to go to Washington University in St. Louis. I haven't had an EMG yet. She says she could do one but doesn't want to torture me twice. My symptoms actually started with twitching and then it has progressed to my tongue, swallowing, feeling of weakness, shakyness throughout my whole body. Pretty crazy. I have had a lyme doc. clinically diagnose me with lymes but nothing he has tried on me has worked and we're about out of options. I have had some dental work done within the last two years. This is just a mystery and I'm fighting everyday. Praying hard for wisdom and an answer.

I appreciate all of you and your responses.

Thanks again,

Steve
 
Thank you for your response Brook. I appreciate it...

Steve
 
Good luck with the next appointment, Steve
 
Dorothy,

What's the three ad's you're saying I should read? Thank you so much for your response.

Steve
 
Mom53,

Thank you for your response.

Steve
 
Notme,

I have seen a doc. and they have looked for a stroke and found nothing. I'm 33 and have been pretty healthy before all of this started. I believe stress started everything and I can't seem to stop it now. I had and extremely stressful job and actually felt out of body there for a while and that's what started it all it seems like. Now I have gotten rid of some stressers and I can't get the progression to stop.

Right now I lead worship for a church of 1,000 members and travel and sing (which is stressful) but it is a good stress. I hate to get rid of that.

Thank you for all of your support,

Steve
 
Steve, alot of what you say fits me exactly. NOTHING found so far, no ALS that they say. I went to Wash U also, will return next month,
they did do the EMG's also there and nerve conduction tests. Fighting every day is what I do also, it is so hard. I am a church organist so I know your frustration each Sunday. I see my regular local neuro tomorrow. Best at Wash U!
 
Larry,

Have you seen a lymes doctor yet?

Steve
 
No Steve but I might need to!
 
Larry,

Have they gave you an idea of what's going on at all? Have you gotten sores on the end of your tongue? A feeling like it's burnt? Trouble pronouncing words at times?

Steve
 
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