Scared sick of ALS.

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Devonsmith

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Hi all. First I wanted to say how much I respect all of you EVER responding to this forum, because I know you have so much bigger things going on. Regardless of the horribleness that’s been thrown at you , you are STILL helping people and that is the ultimate selflessness❤️

So about me: I’m 20, was living life, started getting these horrible cramps in my hands about 5 months ago. I had a friend pass away from ALS, so I’m decently knowledgeable of ALS as i researched it a ton when they had it. This cramping quickly progressed from just my left hand to my right hand, but then now it’s only in my right hand (Ik weird) and has spread to my right leg. For about 3 months my right arm and leg are EXTREMELY stiff. So much so it feels hard to walk like I’ll collapse or I can’t hold my phone, but I always can. My right leg twitches ALL THE TIME. Non stop, same with my right arm but not as much. The right side of my face also feels very stiff, so much so that sometimes it’s difficult to speak for long periods of time, or chew without extreme fatigue. I’ve been tested for myasthenia Gravis because of my eye symptoms when my face feels tight, but I was negative. My right eye feels extremely like swollen and like it’s shutting especially at night when I’m tired.

I went to the neuro yesterday and he immediately said “I’m worried about Lou Gehrig disease with the symptoms you’re explaining” he then checked my reflexes and claimed they were all normal, so that was good. But he wants to EMG my right arm and right leg and I’m just so scared, to anyone that has time to read this plz let me know if this sounds like an onset of ALS or if my reflexes would already be messed up after 5 months, I also had a normal babinski in my right side. Thanks so much all🙏🏻
 
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lgelb

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No, it does not sound like ALS onset at all. I expect the EMG to be reassuring as regards ALS. It is very common to express fears in your body when you have known someone who died from ALS, and I'm sorry for your loss.

Fortunately, you have not mentioned any problems that were actually observed by others, but I am sure they are disturbing to you, so my advice once you have received a clear bill from the EMG is to return to your PCP and discuss next steps, which might include discussing this all with a counselor to separate out the physical from the less so.

Best,
Laurie
 

Devonsmith

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Thank you so much for your words Laurie❤️ It is so disturbing it’s been such a mentally draining 5 months:-( I guess my question is would after 5 months of symptoms if u did hypothetically have ALS your reflexes would without a doubt be off right? Again thanks so much for taking your time to respond to me it means the world
 

lgelb

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I can't say that's true. ALS isn't just about reflexes, and they are not always abnormal in a certain way at a certain time.

What I can say is that you don't describe ALS.
 
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