Old 05-16-2017, 01:40 PM #1 (permalink)
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Smile Twitching/Atrophy Doesn't Always Mean ALS

Hi! Been a while since I've posted here, but I have a story that many people can relate to when it comes to panicking/getting anxiety towards ALS due to symptoms.

For me, it all started back in October 2014. I noticed some twitching in my right arm, looked on the internet and automatically started freaking out. I went to a couple of neurologists and they noticed atrophy in my left thumb, but thought it was carpal tunnel...which it was not.

Between October 2014 and March 2015, I went to countless neurologists, got 2 EMGs (1 clean, 1 dirty), had a spinal tap, MRIs of C-Spine, L-Spine, Brain...got blood tests for pretty much everything....still no answer. I was still twitching and it had started to go to my legs, right arm, etc.

In March 2015, I was fortunate enough to meet with Dr. Glass at Emory, and he calmed my fears. Didn't even really need to look at EMG reports...just a clinical exam and he diagnosed me with Parsonage-Turner syndrome. Basically, at one point in the last 5-7yrs, I injured my brachial plexus and the nerves had just been starting to show some chronic damage. The incidence of PTS is 1.65 in 100,000.

Fast forward to today, it's May 2017, and I am still twitching, still have atrophy...but I do not have ALS. So before you start panicking, go see a doctor that specializes in ALS if you can, and if you can't, make sure you try and get the right tests done to rule it out as best as you can.

After my stint of fear and anxiety, I was on anxiety meds and saw a therapist for three months and it was the best decision I could have made. Don't be afraid to consult someone about your fears, especially someone professional, who won't judge you or anything, but will instead come up with ways to alter your mindset.

I hope some DIHALS find this useful. I'm super thankful for all the help this forum gave me during my limbo time, and in conjunction with my current workplace, we have a great relationship with the local ALS chapter and constantly partner for projects & donations.

Best of luck to all here and to those who are fighting, never forget how much you have to live for!
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Old 05-16-2017, 04:47 PM #2 (permalink)
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Default Re: Twitching/Atrophy Doesn't Always Mean ALS

Thanks for posting this. There was a woman back when I started with the forum who kindly posted photos of her atrophied hands who also had twitching and had received another diagnosis. This is very helpful and it should always be remembered that the great majority of people who are concerned about ALS do not have it.

It is a simple statistical fact that if you are living in the United States, for example your chances of dying in a car accident in the next 12 months are six- nine times higher, depending on your state of residence than that you will be diagnosed with ALS.
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Old 05-16-2017, 06:50 PM #3 (permalink)
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Default Re: Twitching/Atrophy Doesn't Always Mean ALS

Nice to see you stop by. Thanks for sharing and thanks for your advocacy

Best wishes
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Old 05-16-2017, 07:00 PM #4 (permalink)
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Default Re: Twitching/Atrophy Doesn't Always Mean ALS

Thank you... this Thread (your post) should be considered, in some way, become a "Stickie".

Ooops, that's what it used to be called... now it's "Important."

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Old 05-19-2017, 09:48 AM #5 (permalink)
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Default Re: Twitching/Atrophy Doesn't Always Mean ALS

Clearwater AL - you especially were active on here when i was at my craziest. I thank you for being patient and hope that you are doing well.
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