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kram

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Apr 7, 2012
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Learn about ALS
Country
US
State
Ohio
City
Columbus
Hi there, I am leaving the country in about 3 months and I humbly ask for some opinions on my symptoms.

About 3 months ago my right arm started to feel weak when I was driving, and within the next few days it had spread to the right side of my face and leg . This lasted for about a month until the weakness spread to my other leg, other arm and hand, and neck. Soon after that, I started having twitches in my knee and left eyebrow, which has since spread to the rest of my body(hands, feet, arms, legs, abs, face). My face feels as though its being pulled downward and legs feel very heavy.

My right side is slightly weaker than my left yet I have no clinical weakness. After seeing two neuros and having a EMG(showed minimal peripheral neuropathy in lower leg) they both said no to ALS. I had a CT scan of head, MRI of head and neck, and multiple blood tests. I just took a lyme test as well. The only thing that was strange was an elevated liver number.

My concern is that diagnosing ALS takes some time, over months or years. I am aware my age(24) makes me an unlikely candidate but I have not gotten better over the past 3 months. Having been an athlete at one point, I can tell something in my body is not right. Am I crazy to think I have ALS? Having looked at this forum for the past month or so, I respect your opinions so I thought I’d seek a few more opinions before leaving the USA.
 
No Clinical weakness, no ALS.
 
Hello,

MND shows up on EMG long before symptoms become evident to the patient.
JB
 
No ALS. Congratulations. Good luck to you!
 
Thanks for the thoughts, I appreciate you taking the time to post them. One last thing, today I've had some cramps in my inner throat and tongue region which has also been weak over the past few weeks. Does the EMG that they did on my leg and arm prove that the weakness in my face is not ALS? Once again, thanks for taking the time to read this. BTW I'll be working at an orphanage/teaching english in Hong Kong.
 
My right side is slightly weaker than my left yet I have no clinical weakness. After seeing two neuros and having a EMG(showed minimal peripheral neuropathy in lower leg) they both said no to ALS.

There's your answer? Why don't you believe them? You don't have ALS. What did they tell you that they think you might have? Maybe something like benign fasciculation syndrome (BFS)?

My concern is that diagnosing ALS takes some time, over months or years. I am aware my age(24) makes me an unlikely candidate but I have not gotten better over the past 3 months. Having been an athlete at one point, I can tell something in my body is not right. Am I crazy to think I have ALS? Having looked at this forum for the past month or so, I respect your opinions so I thought I’d seek a few more opinions before leaving the USA.

If the twitches and weakness you are complaining about had actually been caused by ALS, you would have been an easy diagnosis. Fast moving cases are easy to diagnose because all of the symptoms present so quickly. It's the slow progressors like me that have difficulty getting the final diagnosis. Your EMG would have had unmistakable signs of the destruction of lower motor neurons. Your reflexes would have been noticeably diminished. The tone of your muscles would have been limp and floppy.

Given your personal description of your symptoms and the findings of your two neuros, the answer to your question "Am I crazy to think I have ALS? " is "Absolutely yes" And that crazy is something you need to be getting evaluated and treated.

Good luck to you.
 
I read your original post earlier today and found the writing style to be quite familiar and somewhat sad. But I also felt something was missing so I read it again and again. Finally I realized the missing piece was the swallowing issue. But like a champion you came through with “one last thing” this afternoon. Thanks for that update; it secured my opinion.
 
Thanks for the advice trfogey, I think your last point is a good idea, maybe my next doc visit I should ask about anxiety. Two neuros and an emg should be enough to convince me. My coming departure combined with never before felt sensations has put me on the edge. Once again, thanks for replying and I won't take any more of your time.
 
Hi kiwisally, I will be working at an orphanage/teaching english in Hong Kong. I plan on staying there for a year at least, maybe longer.
 
Two neuros and an emg should be enough to convince me.

You would certainly think so but yet it's not.

Once again, thanks for replying and I won't take any more of your time.

You say so but once again, you do.

I'd suggest you get a professional to address your anxiousness ASAP. Get on that plane in 3 months and focus all your attention on something other than yourself and have a great time out in the world helping others.
 
Kram,
You asked for opinions and you got the best answering you. I will throw in my 2 cents for free. NO ALS! Breathe a sigh of release. I also agree with Tr, next stop, psychiatrist/psychologists office. I believe anxiety from your upcoming departure is causing you to exacerbate your symptoms. RX: cheap. Step away from the computer and ignore dr go og le, he's a quack. That's what brought you to this site in the first place! Step on that plane and do it without second thoughts.
 
And seaside, a BIG yes to you. As I read the posts when they are a few hours old, as I "scroll" down the page with my stylus in mouth, I catch myself saying, "wait for it, wait for it" and I'm never disappointed. Sadly, its now a given with the dihals.
 
Agree with the others on no ALS--but they should probably track down the cause of the peripheral neuropathy--not normal in someone your age. Are you a diabetic?

It's likely some kind of virus that is making you feel off. Work with your doctor and forget ALS. Clean EMG = NO ALS. Simple as that.
 
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