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BeccaA.

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Nov 18, 2015
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Learn about ALS
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US
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MI
City
GR
Hello, I am so interested to read all of your questions and responses. It is so nice to not feel alone. I am 45 yr old Mom of 3... I have had 2 MRI's for suspected MS, the last one was 10 years ago. I have had a tremor in my hands for 15 years. It was ruled out as MS, and told I had a form of Dystonia as my neck slightly turns to one side and I have the tremor, which never progressed.
However, in the last few months I have had extreme weakness in my legs. I feel like I have biked 30+ miles... and I do NOT bike ;) My upper arms also are very shaky when I bend them or try to hold something heavy. my feet hurt even in the morning, my legs feel odd even when laying in bed and occasionally have muscle twitches in upper and lower leg. I choked drinking water twice in the last month, absolutely felt I could get no air at all, very scary. I am waiting on blood tests and if they are normal my Dr. wants to send me to a Neuro. for an EMG, etc.
Of course when I look up these symptoms of weakness, choking, twitching all I see is ALS! I am so in fear of leaving my precious children that I can barely sleep. Everytime I walk upstairs and have to hold the railing, I feel even more anxious. Can you from your experience tell me to knock it off, or am I reasonable in suspecting it? Appreciate your time.
 
Hi Becca, I understand that Dr Google made you lose sleep over those symptoms.

First, the reason people with ALS choke is because muscles in the tongue are paralyzed, laying limp and useless. So go to the mirror and move your tongue up, down, left and right.

Second, twitches are so common to so many conditions that they are not diagnostic of anything. Lots of healthy people have twitches. The most common cause of twitching is probably stress and anxiety.

Third, your legs feel odd. They felt weak. But in ALS, there is no odd or weak feeling. The leg muscle simply doesn't go, doesn't contract, for apparently no reason at all. There isn't a feeling that explains why the muscles won't go.

In ALS, the big deal is weakness. Actual, clinical obvious inability to move. A GP doc or a neurologist can perform a deceptively simple test to see if you have clinical weakness or just perceived weakness. Can you walk back and forth on your heels, and then again on your toes? If it feels hard to do, don't sweat it. If the muscle can get there, it's not "dead."

Keep your appointment and let your doctor guide your health investigation. But don't lose any more sleep over ALS.
 
Thank you so much for the words of advice. I did have to do the walk on my heels & toes... Could barely do the tip toes & was quite shaky. Heels I did OK. My arms now are as shaky and odd feeling as my legs so I am very impatient waiting for a diagnosis, worry gets the best of me. Thanks for taking the time to help.
 
Could you please revisit my symptoms - and the new ones... I am still waiting to see a neurologist, I have a week left to wait. In addition to both legs and arms feeling week, occasional pins & needles - I have now for 2 days had occasional numbness of my chin and tongue. My tongue now is moving and twitching when I just stick it out to look at it in the mirror. If I hadn't heard that was a symptom of ALS, I probably wouldn't be so concerned. I felt in the night that it was numb so I couldn't swallow, leading to a panic attack of sorts. Your response reassured me that ALS presents with just not being able to move a limb. But the more I read here it seems to come more subtly? The weakness I have is not just in one limb which seems more typical of MS - so is that a sign that points to ALS as well? I am so sorry to second guess you, but with these new symptoms come new worries. I keep seeing signs pointing to this, please let me know your opinion.
 
Becca honey while you wait for this appointment would you please sit down and read our stickies really carefully. While you do, remember that what they say is our official position, and you will find it really answers you very well already.

A week isn't truly very long to wait, some of us waited months for appointments and then months more for tests.

All the best, in the meantime try to keep yourself involved with your children and remember that every day you don't do that you have wasted and you will never get back a day that has passed.
 
:-| Thank you for the response. I did go back and read, and re-read. I really appreciate your common sense answers. Thanks so much for the help. It is so comforting to have people like you to talk to.
 
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