Asking for an opinion

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bmdrum2

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I have read that twitching without failure means no ALS. I have had twitching for a few weeks in my right leg and just recently it began feeling fatigued when I do anything. Stand for too long: Fatigued. Walk up the stairs and my right leg is extremely tired. Etc. I still have all functions in my leg and have no trouble walking, but the fatigue is concerning me. Could it be the very beginning of ALS since it occurs with twitching? Any advice would be much appreciated. Also, my grandfather has ALS so symptoms like this make me extra nervous.
 

Nikki J

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People with benign fasciculation syndrome often complain of muscle fatigue. Assuming your relevant parent doesn’t have ALS your grandfather having it does not raise your lifetime risk significantly.

please see your doctor for evaluation
 

bmdrum2

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Ok, thanks so much. So, leg fatigue is not early ALS?
 

affected

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No leg fatigue has nothing to do with ALS, that's great news.
You don't mention seeing a doctor or talking to your parents, I think that is something you should do.
Also, please read this really carefully as it will answer your concerns clearly.

I'm sorry about your grandfather. I can also assure you that if he has ALS now, there is no way at all you could develop ALS at the same time.
 

bmdrum2

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Well, he HAD Als. He died about 15 years ago at the age of 80. I'm currently 48 and I do have a doctor's appointment scheduled to try to figure out what's going on. Thanks so much for your time with me.
 

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I do apologise, you wrote he has ALS.
What you need to understand about the even rarer genetic ALS is that it can only pass to you if your parent has the gene, and so we would expect your parent to be developing ALS sometime in the next 5 - 15 years.
We would not expect you at such a young age to develop it as it does not skip generations.

When you go to the doctor, please do not ask if you might have ALS. Let the doctor know your symptoms, have a clinical exam and let them decide what direction investigations should take. Too often when people go in asking if they have ALS they either feel they are ignored, or they skew the diagnostic direction away from what is going on.

Let us know once you have some results to share.
 

bmdrum2

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Thanks so much for taking the time to respond. You have helped put my mind at ease. I looked back and I see my typo. I meant to say had.
 

Nikki J

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Your grandfather’s age alone ( aside from having no other affected relatives) makes FALS unlikely. The risk of ALS rises with age but onset even in single cases is more commonly mid50s to 60s and FALS tends to strike younger because of the strong genetic predisposition we have
 

bmdrum2

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So sorry to bother you all again. Just dealing with anxiety. So, I just read an article from als.org that said unusual tiredness in the leg or arm can be a sign of als. I’m just freaking out again. Again I’m 48. I am now a donor to this forum and I thank you for all the advice you give me
 

Nikki J

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Those kinds of articles are necessarily vague and often misleading. Again please see your doctor for evaluation. Is there someone who says they first felt fatigue? I am sure but it can generally be traced back to some clinical weakness ( failure). A doctor can examine you to screen for this. We can not. you have an appointment. Present your symptoms and ask if they can detect any weakness
 

bmdrum2

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Thanks so much Nikki. I appreciate you taking the time for me. IT means more than you know. I'll let you know how my doctors appointment goes tomorrow. With my two main symptoms of Fatigue and twitching, I'm starting to feel better.
 

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Please know that this is not an anxiety forum, we really just don't have the resources for that.
Fatigue and twitching are not the hallmarks of ALS onset.
You do need to address the anxiety with your doctor as regardless of what they end up diagnosing, you will never have this time back again, so don't lose it this way.
We've truly addressed all we can with you until you can return with a diagnosis. I hope you can get this worked out soon, I can hear how hard this is for you.
 
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