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cactus

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Joined
Oct 15, 2018
Messages
6
Reason
Learn about ALS
Diagnosis
00/0000
Country
US
State
MN
City
Minneapolis
Hi all,

I just wanted to share a recent journey about my ALS scare and how the best thing to do is seek out a medical professional right away if your concerned. I feel like my story will resonate with others here lurking on this forum.

Unfortunately, a 40-something neighbor of mine was recently diagnosed with ALS. I've known him for years and given it happened in a small community it was quite a big shock.

Once that happened, I like many others I'm sure started doing some searching on ALS. As I continued to dive deeper and deeper I was convinced I had it as well. I'm a 32 M.

Before hearing the news of my neighbor's diagnosis I had a spell of ulnar nerve entrapment issues. I would wake up and have frequent numbness in my ring and pinky finger in my left (non-dominate) hand. Occasionally, in the mornings it would make opening bottles difficult and in general made my hand feel tired. I never saw anyone for this until today and during that whole time ALS never crossed my mind.

Suddenly, after his diagnosis and my constant Googling the fear and anxiety grew to a fever pitch. I suddenly began noticing every twitch in my body. I was sure my left hand was having atrophy. I'd constantly have my fiance stare and examine my hand muscles. I'd constantly force myself to use my left hand for things I'd never do left-handed before. Examples, I'd use a fork in my left hand to eat, or hold and scroll my phone in that left hand, dip chips with that hand, etc. It would then only confirm my fears. Oh what a struggle I was having with my left hand and it couldn't be anything other than ALS. In a weird way it was like I was looking for every reason to confirm I had ALS. I eventually ended up landed on this forum reading countless stories of other would be PALS.

That was my breaking point. I was miserable, this had gone on for two weeks. Finally, I went to my doctor today and had her look me over.

The diagnosis... Yes, your left hand (non-dominate) hand has a little less muscle mass then your right. However, given your acknowledgement of always having a lack of coordination in your left hand, and using your right hand almost exclusively for most fine motor skill tasks this isn't atrophy. Also, given your numbness issue you most likely had a spell of Ulnar entrapment.

She even mentioned with constant cellphone use it isn't uncommon to have thumb muscles nearly 10-15% bigger in that particular hand. She also phrased it well to me. "If your right hand looked the same as your left hand would you be worried?" Nope, it looks fine, I just became obsessed.

As for the twitching she also said they can be like the hiccups. They can come and go and even stay for awhile too. Lots of causes there. She said she could have scheduled an EMG, but advised against chasing something that doesn't exist.

She advised I could do some hand exercises at home if I really wanted to, but her biggest piece of advice was stop asking "Doctor" Google.

TLDR: If you're really worried make an appointment with your doctor. Self diagnosis and worry only makes it worse.
 
Nicely stated, cactus. Glad you are past the misery, and I know your account will help others.

Best,
Laurie
 
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