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402814 tn?1202002981
READ THIS FIRST! If you think you have ALS
Dear readers:

I have been reading many posts on here and I am curious why everyone thinks the worse? I HAVE ALS and I wish I didn't, why is it that everyone assumes that there is something seriously wrong.  ALS is rare only 3500 new cases a year in North America. It strikes at an average age between 40-70 years of age. Although rare, it can happen in a younger age 30s and rarer yet, in the teens. Not all fasciculations is ALS, some are due to a lack of electrolites and calcium. There is also a condition know as Begnin Fasciculation Syndrome that also as in the name are simply harmelss muscle twitches with no known cause.
All other neurological diseases have to be cancelled out first before there is any consideration of ALS. EMGs are a good diagnostic tool but a muscle biopsy is better.
Stop worrying about it so much, you will make yourself sick, I do not wish this illness on anyone, it really SUCKS and I have it. Sometimes when I read your posts, it looks like you are eager for it to be. This is not intended to insult you nor to imply that there is nothing wrong and it is in your head, but rather just to inform you and to start simple. Think positive!!!
If any of you have any questions about the illness, just ask.

All the best to you all
Be Healthy, Be safe and Be smart
Krisztina
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4 Answers
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Avatar universal
well i have had all the test and have had 2 emg test and with swallowing problems,weakness,fatigue,tongue weakness,absent gag reflex,chewing difficulty,my emg test went from bad to chronic in 7 months,and i have been told by my dr that i have a motor neuron disorder both upper and lower,which i believe with all the symptoms i have and the speed of the symptoms,i do think it is als.my neurologist is wanting to send me to ohio to a dr that handles als all the time because he has not dealt with it as of yet.it is rare,but i never thought i would have anything like this either,and no it is not something anyone wants to have,people just get no where with some of these doctors and they start having to research it themselves,my dr kept telling me for the past year,i need to have more symptoms,while doing this waiting i am coughing myself to death from food going into my lungs and at night crying because i can barely swallow my own saliva,and he wanted me to wait.finally i insisted on him doing another emg test because my tongue was so weak i could barely push food around in my mouth,and that is when he figured out that i had it.i have muscle spasms,twitches,numbness tingling,sharp pains that hit me all over,and i have noticed lately that i have no gag reflex,nor can i whistle like i used to be able to do,and those are signs of als i am told.i also have positive babinski sign and hyperreflexia in all my reflexes including my face.this has been going on for over 3 years now,and i keep reading where some people only live 3 to 5 years from onset,so of course i wanted to know if this is what i had,i have my first grandbaby coming in 2 months and i will barely be able to hold him because of my hands and arms being so weak.this does suck and if it were not for my daughter and her baby coming ,i would have given up by now i believe,because i am miserable.i lost my job because of missing work all the time from being sick and going to dr visits,and have had gallbladder out ,acid reflux surgery and colon surgery during all this time,because of this problem,they would find something else wrong when they were trying to figure out why i was coughing and hoarse every time i ate and drank something.my colon i had to have 18 inches of large intestines cut out because with the coughing and my bowels not working half the time i had them coming out of me,so i am aware of how serious this disease is ,better then just about anyone.my bowels still do not work most of the time and my colon surgeon said thats probably why ,the muscles in my colon are messed up and weak from mnd.good luck with your health,look forward to hearing from you again..     wanda
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I understand your feelings.I don't anything but a diagnosis. If you could share with me major symptomsyouhave experienced as well as how you were diagnosed, the advice would help me focus on something else. I am rspecially interestedin the number of EMG's you might have had. God bless you,and thank you.
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