Alright guys, your completely right

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I can't stay worried about this whole thing, it's gonna kill me and it's unproductive and the stress certainly isn't gonna help anything out. Playing internet doctor is the wrong way to go about all of this and I need to head in I think and let them know that 1. yes somethings wrong and 2. It's not my place to tell them what the hell it is. I mean it could be a whole lot of things, I gotta let them make the call and trust in that.
 
Good on you, Corey! Sounds like you've got a plan!
 
Course we are right. :) did you ever doubt:) way to go. Now don't you dare regress.

Aly
 
Well I just I'm so damn tired of being freaked out, it's out of my control anyway as it is if it is something off then my freaking out isn't going to fix it to begin with.

@Aly I can't say it's going to be easy, but I'm just gonna have to get my head outta my ass somehow =)

If it's alright, I'll let you know what I get back when I go thursday.
 
An I'll make sure I believe what they say, I feel like thats probably the most crucial part of the equation here =)
 
You are on the right track!
 
Hi Corey,
I have crazy symptoms like you and I'm having weakness to the point that I quit working out. It's been hard because I've lifted weights religiously for the past 10 years and packed on 50 lbs of muscle. I'm losing it all. The slow, bilateral onset of my symptoms combined with my age point away from ALS. However, something is going on. Muscle twitching, cramping, pain, and weakness are making my life miserable. What's really difficult is that nobody understands. My wife tells me nothing is wrong because the doctors say nothing is wrong. She wants me to run, swim, and lift with her at the gym again. She wants the old me back. I don't know how to get her to understand that the old me is no longer here. I just can't do those things anymore.

After months of sleepless nights and daily worry, I finally decided to accept the fact that I might have late onset ALS or PLS or some type of spinal atrophy disease, etc. Whatever it is, it's not good. When I finally accepted (acceptance is key for me) that things were going to be different; that I will no longer be able to do the things I used to enjoy - I felt a sense of relief. I can't tell you what that did for me to let the worry go. It doesn't help to worry. It does nothing.

I hate to type this here because I don't want to freak anyone out. But I worried so much that I started thinking about suicide. I came up with a number of different methods that I could go through with. When I came to the knife's edge so to speak, I realized that I still have life to live. Even if I get so weak I can't walk. I still have tomorrow, and next week, and next month, and probably next year. Why kill myself now?

I climbed out of that dark place. I see the light again. It isn't the same as it was before. My life will probably never be the same. But there's still happiness and time. I guess my point is...you might have something terribly wrong with you. Then again, you might not. Either way, worrying does no good. It solves nothing, and it makes your life miserable. I think the key word is acceptance. Whether you've been diagnosed with a neurological disease or not, accepting life as it comes is the only way to have peace.

Hang in there,
Greg
 
Corey, good for you.


Greg

You went from having ALS . . . to muscular dystrophy . . . to PLS and/or spinal muscular atrophy and/or late-onset ALS (I have no idea what late-onset ALS is . . . never heard of it).

You don't have any of those. Why? You had a clean EMG, which rules-out ALS, muscular dystrophy and spinal muscular atrophy. You don't have a single symptom that would point towards PLS . . . and again . . . I don't know what late-onset ALS is (the term / disease doesn't exist).

Calm down and stop trying to diagnose yourself with diseases there is absolutely no evidence you have.
 
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Wright,
People have clean EMG's all the time and later end up with ALS. My EMG was at 2 months because of twitching. There was no muscle weakness in the beginning. Over the past year, my strength has been going downhill. Weakness is indeed a sign of MND.

I don't recall diagnosing myself. I believe I have "something" and threw out a bunch of possibilities. It might not be ALS but there is definitely something wrong.
 
Here we go with someone else telling everyone that a clean EMG means nothing.

If your symptoms started and were present when you had your EMG . . . and those symptoms were lower motor neuron-type symptoms . . . and your EMG was clean . . . then those symptoms were not from lower motor neuron dysfunction. End of story. You clearly do not understand.

You are diagnosing yourself . . . you just can't decide what you want that diagnosis to be. There isn't a shred of evidence you have any of the things you stated, for the reasons I gave in my first post.

Weakness is a sign of MND but it's also a sign of a gazillion other things as well . . . and given your story isn't even close to the story of someone with MND . . . to a rational and knowing person . . . the conclusion would be that MND is off of the table.

Now respond by telling me why MND is still a possibility, given your vast knowledge.

P.S. You giving your symptoms and then stating you feel you have some type of serious disease will scare people on here that aren't aware you don't know what you're saying. It also spreads misinformation on the internet and there's already enough crap out there.
 
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Wright, I hope you're right.

Nobody's ever had symptoms, clean EMG, followed by worsening symptoms and a not so clean EMG? I thought I read 2 or 3 examples of that on this very forum, and I haven't been here long.

P.S. This is a forum where people go to share their symptoms and fears of MND. Not sure how you're going to police it to try and prevent fear LOL. Sort of goes with the territory, doesn't it?
 
I'm pretty sure I'm right, Greg. The sternness in my post is truly meant to help you understand that your story is simply not the story of someone with ALS.

Can someone have a clean EMG and then later develop ALS? Of course, but anyone has as good a chance as anyone to develop sporadic ALS. Listen, if you get a brain MRI today and it looks fine . . . does that mean 10 years from now you can't develop brain cancer? Of course it doesn't.

Having said that: If someone has symptoms that could possibly be explained by ALS and their EMG is clean, then those symptoms are simply not due to ALS. It's truly that simple. If someone got an ALS diagnosis after they had an initial clean EMG, then that person had PLS (upper motor neuron dysfunction) first or upper motor neuron dominant ALS and later developed lower motor neuron dysfunction. That doesn't pertain to you because you don't have any upper motor neuron signs or symptoms.

Just hang in there and do your best not to think the worst. I know that's hard when symptoms are unexplained, but your symptoms will be explained in due time if you just let your docs figure it out. Don't fall into that deep, dark place of internet self-diagnosing. It's not good for you mentally or emotionally and will cause your symptoms to worsen because of anxiety. I wish you peace.
 
Wright, I hope you're right.

When it comes to EMGs, you can count on wright being correct. Considering the fact that he teaches doctors in training at a US medical school how to perform EMGs and how to interpret the results, it's safe to say that he's forgotten more about EMGs than you or any of the rest of us will ever know.

Nobody's ever had symptoms, clean EMG, followed by worsening symptoms and a not so clean EMG? I thought I read 2 or 3 examples of that on this very forum, and I haven't been here long.

You've read stories where people have made those kind of claims. Most probably, you've read claims by other people in this part of the forum that there were other people that claimed that they had multiple clean EMGs followed by a troublesome one.

I'll make the same challenge to you that I do every time someone makes that claim: what are the names of these people? We've debunked the others -- I feel confident we can explain yours too.

P.S. This is a forum where people go to share their symptoms and fears of MND. Not sure how you're going to police it to try and prevent fear LOL. Sort of goes with the territory, doesn't it?

We don't try to police the fear. We'll attempt to reason with someone who shows up here for a time, until they prove themselves to be completely irrational. Then, they might just be ignored or ridiculed, perhaps even banned.

Ultimately, the only one that can police the fear in your head is you, because you are the one who put it there. That's right -- you and only you are responsible for any fear that you have about ALS/MND, unless a real doctor has told you that it is possible that you have MND (which happens extremely rarely in this part of the board).

Usually here, it's the other way around -- twitching person finds ALS on Internet, mentions it to doctor, then doctor does tests that check for ALS. When tests are clean, patient is too emotionally invested in Internet research to believe doctor, so patient does more Internet research, looking for "atypical" presentations of ALS.

That's when the patient ends up here, because the archives of this part of the board are chock-full of people who came here and made silly or outrageous claims that never turned out to be ALS.

Your Internet research has brought you across some of the ALS/MND misinformation out there. That's why you're here. Instead of learning about the disease, how it presents, and how it progresses, you're digging in the archives looking for oddball cases like yours. If you learned the truth about the disease, you'd see that it is very unlikely that you have an MND. The fact that you have to call your case an atypical one (bilateral onset) should throw up a huge red flag to you -- that maybe you don't understand much about what you think could be causing your problem

It's your choice -- do what it takes to find out what's wrong with you (means going to real doctors, not searching the Internet) or continue to live in fear.

Your choice?
 
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