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Amyotrophic Lateral Sclerosis (ALS) Message Board

Scared of ALS


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Old 10-29-2015, 12:05 PM   #1
Riggz
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Scared of ALS

I am a 31 y/o male. It started in my right forearm where the weakness/pain came out of nowhere one day while taking the train home from work back in early March of this year. Fast forward a few weeks I was coaching my softball team and my legs started to ache. I was assured that going from arm to legs so quickly would never happen - but fast forward to now - and I had to miss my summer basketball league, volleyball league, and softball league because my legs just 'didn't work right' anymore. Had a serious gait issue with coordination that brought me to tears on numerous occasions. I was a division one athlete so I know how my body is supposed to work - not being able play sports is just not normal for me. Had cramps and charlie horses and the like on both legs and days where my legs just felt like jelly. So many nights my girlfriend would wake me up and my legs were crossed in the air for what I'm assuming is Restless Leg Syndrome.
Now the main issue is with my right foot and right big toe which seem to be getting weaker by the day. Getting harder and harder to walk on tippy-toes and heels which is obviously terrifying me. Have cramps in both calves and my right foot is starting to feel so heavy. And my gait has me bumping into walls sometimes. It's so strange.

But what has me most scared? The continuity of the weakness of my hands. I can still tie my buttons on my shirt but so many other tasks like typing this and writing have become so much more difficult. Without being gross, picking my nose and using toilet paper is getting harder and harder each day. Just being able to manipulate my hands and fingers is so difficult. When I hold a magazine, I can feel my index finger pulsating trying to hold it up. Using a knife and fork - so awkward when it used to be so easy. And my right shoulder is starting to droop so I am praying this isn't shoulder drop.

So something has been wrong with my legs/feet/arms/hands since this has all began and now my mouth is truly being affected. I don't "slur" my words per se, but am constantly fighting to gets words out. I answer phones at work and I need to take deep breaths before I begin to speak - and I still jumble my words. Another example - I tried screaming "Two Outs" at my friends softball game and it came out sounding like "Thoo Outs". Happens all the time. That with the fact that I've been clearing my throat constantly since July. A very hoarse voice when my voice used to be so deep and strong. Also, when I talk, I have felt my cheeks quiver and I have started to bite my cheeks. Constantly have to spit with so much saliva.

So my legs, arm, hands, and mouth all seem to be involved. And of course there is twitching in many places (hands, legs, feet, and the worst is behind my right arm). But I try to overlook that b/c all of you say it really isn't a symptom of this terrible disease. But with everything else going on, it just gets me more scared every time I feel one.

I am currently on a major Vitamin D intake which is the only thing left that my neuro thinks could be doing this to me since mine was so low. My third neuro who is a neuromuscular specialist is amazing and he gave me all the tests again and told me I was fine besides the Vitamin D. He saw something minor in my left wrist which he thought could be early carpal tunnel so he has me sleeping in hand braces which don't seem to be doing anything. He told me to call him once I take my last Vit D pill which will be next Monday to see if there is improvement. And if not, than he wants to seem me again to go to the "next step". No idea what that means but I clearly am scared since there is no improvement whatsoever. Any input on my symptoms would be greatly appreciated. I value your opinions so greatly so please advise. Feeling weak was one thing - but now not being able to talk like I did has me so nervous. Thank you so much for reading.

 
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Old 11-25-2015, 11:15 AM   #2
Riggz
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Re: Scared of ALS

Somebody please read and respond. Need all the help and insight I can get.

 
Old 04-14-2016, 09:53 AM   #3
abctoxyz
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Re: Scared of ALS

I wonder what happened?

 
Old 09-11-2017, 12:28 AM   #4
AnxiousAthlete
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Re: Scared of ALS

Hi, are you still on theae forums? I would really like to talk to you...im having these symptoms...

 
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