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402814 tn?1201999381

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
5 Responses
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
Avatar universal
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.
Avatar universal
Thank you SO MUCH for what you said. Everyone does always expect the worst. Read the book "Mind to Matter". It is scientifically proven that our thoughts create our reality.  People are only creating had things by expecting had things. What if it's something minor? Expect an easy solution.
Avatar universal
Hi Krisztinah2o

First off I’m really sorry that you are dealing with this disease. It’s unfortunate that it even exists, and I really hope that you still find joys in life, which I’m sure you do.

I just want to know how your symptoms evolved before your diagnosis. I’ve been experiencing significant weakness in my right calf/foot/toes, and shaking and giving out of the muscles whenever I push it in yoga.  Then the next day it is extremely sore, much more than usual. Simultaneously, my right leg has been twitching a lot. It’s isolated to my right leg, which is why I’m so concerned.
Avatar universal
Thank you for your response to this query!  My heart goes out to you, Krisztyna, knowing you have ALS!!  I hope you are coping well, especially so since my post is 11 full years after yours!

I understand your concern about people jumping to conclusions about a diagnosis, and thinking they have this, or that, based on their own self-diagnosis from reading about "symptoms" from the billion and one websites out there.  I think many people have a tendency to suspect they have the worst, and I've read comments on other sites, where people were actually DISAPPOINTED with their Physician's diagnosis because it wasn't what they were CERTAIN they had, and they had even vowed to find a different Physician!!

I was my Sister's primary caretaker after she was officially diagnosed with ALS in June 2001.  Her symptoms began in April 2001.  How patients progress with this disease, whether slowly, or progressively, is NOT known.  Even with the absolute BEST physican's, medications, accomodations, aids, equipment, finances, and support, no one can accurately predict a patient's outcome, EXCEPT, to the extent that ALS patients, like every single one of US, will die.

My sister was in the best of situations when she was diagnosed.  She had great resources, living near one of the top two ALS research centers in the U.S. at that time.  She had top notch medical insurance, plenty of financial resources, was given the newest medicines to treat her, great family and community support, and even with all of that, she declined quite rapidly.  It was heartbreaking to watch, but she always remained so positive!  She would joke about having a "Margarita voice" (like one would talk after having one, or two, too many margaritas) when her vocal cords were failing, or she would challenge her three year old grandson to a race, he running alongside her in her power wheelchair.  He always won, of course!

We laid her to rest in January 2002, just 9 months after her diagnosis.  We had always been so very close, and on her passing, I felt like half of me died along with her.

So, YES!!  Don't any of you EVER wish for something as devastating as ALS.  Just because you have, or THINK you have, a symptom, or two, of ANY condition, disease, or ailment listed in a book, or on a website, do NOT jump to ANY conclusions THAT you HAVE THAT particular condition, disease, or ailment!!  The overwhelming odds are that you DON'T - especially ALS, because it is not that common, or prevalent!   In the rare, rare event you do have ALS, is that something you really want to pat yourself on the back, just to brag to friends that you were just as smart the Doctor who diagnosed you, even though you've just been handed a death sentence??
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