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JWAN

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I have a question please. I just finished reading the Sticky Note for new members and now I am a bit confused about a couple of things. One thing in particular, is how it says in there that ALS is a "failing" not a "feeling" disease. As much as I understand what that means, it confuses me in that, it makes it sound like you just wake up one day and your hand won't work.....Not that you may have been having trouble with it for a bit.
There must be some kind of progression, or am I wrong? And if so, doesn't it make sense that one would feel it happening. Like the hand getting weaker and weaker, unable to button, tie, grip. What is happening with the muscle as it dies...doesn't the person feel something happening....
 
Re: I have no idea what's going on with me...

Also, I am a bit confused about EMG's...I understand what it means when you say, if your EMG is clear, clean, normal... YOU DON'T HAVE ALS....but then I have read so many times where people who were eventually diagnosed with ALS had clear, clean EMG's on more than one occasion. They were diagnosed with something they didn't even have, but then just kept presenting with new or worsening symptoms and weren't diagnosed with ALS until much later.

So "HOW" does this person "FEEL?" Are they experiencing muscle pain, in that "worked out like a crazy person and now my muscles are aching even 2 days later" kind of pain...only all the time?
 
Re: I have no idea what's going on with me...

JWAN, these are all issues really only a Neurologist could best explain to you. We have members who have been diagnosed with ALS yet are still working but don't know how much longer because they are getting weaker. It has been an endless discussion here. Maybe one of our very knowledgeable members can help but seeing a Neurologist and presenting your questions to him/her will answer you best.
 
> One thing in particular, is how it says in there that ALS is a "failing" not a "feeling" disease. As much as I understand what that means, it confuses me in that, it makes it sound like you just wake up one day and your hand won't work.....Not that you may have been having trouble with it for a bit.
There must be some kind of progression, or am I wrong?

ITS DIFFERENT FOR EVERYONE BUT WITH ME YOU WERE WRONG.
ONE DAY i BOUGHT A JUG OF MILK AT THE SUPERMARKET AND WHEN i GOT HOME i REACHED IN WITH MY LEFT HAND TO TAKE THE MILK OUT OF THE TRUNK. nOTHING HAPPENED. mY ARM WOULDNT WORK. iT WAS THAT QUICK.
 
So you weren't experiencing anything at all before that moment?
 
JWAN, as nebrhale53 wrote, "it is different for everyone."

But remember... this is a Forum. People can claim to have been diagnosed with ALS. No proof required. So, you have to take it all in general. Again, the most qualified answers come from a Neurologist who specializes in MNDs.
 
I only ask because my husband is in the process of being diagnosed. At this point in time we are praying for anything other than ALS. We were at the Cleveland Clinic 2 weeks ago and are headed back there on Tuesday next week. He had a second more thorough EMG while there and it came back showing what the Doctor called muscle disease. He said it showed signs of a degenerative muscle process and said that we could not take anything off the table until more test were done. He ordered a whole body blood test and a muscle biopsy because my husband wasn't presenting with any atrophy and still has strength. It is getting weaker and weaker and he says he has pain, in that "over worked muscle" way he has a hard time brushing his teeth, using his arms and his hands are really bothering him. He first started with twitching in his right calf over a year ago and now he has it in several other areas...

I guess my question to people who have ALS is "what did you experience on a day to day basis in the course of a week before you received the diagnosis or even just after in regards to your muscles? Did you have discomfort of any kind?
 
Told you what it was like for me. Make sure the emg looks at ALL parts of the body-arms legs, tongue, paraspinal muscles etc.It starts out in one area then moves to others.
 
The emg was on one side of the body, from his foot all the way up to his neck, then to the back and the buttock.
 
"it makes it sound like you just wake up one day and your hand won't work..."
You have to understand there is a difference between a "hand" not working and a "muscle" not working.

And yes, it is about failing. One day you may suddenly notice that you can't stand on your toes. It's not that your whole leg doesn't work. In fact, the rest of your leg will probably work fine--it's only when you fail at a certain act--walking on your heels, standing on your toes, jumping off the ground--that you suddenly realize that you have a problem. All of the muscles in the thigh, calf and foot have not failed so you can still do most of the things you expect of your legs and feet. ALS is a motor neuron disease so there are no sensory warnings. You do not notice that you are developing weakness in your ability to stand on your toes... because you don't do this every day. If you do, you have severe health anxiety... or you are a ballerina and, yes, a ballerina would probably notice this because this would be a "fail" to her, if she was suddenly weaker. She would go to her neuro and present with clinical weakness.

"I have read so many times where people who were eventually diagnosed with ALS had clear, clean EMG's on more than one occasion..."
I hear this from time to time, but people rarely back up the statement with any facts. I would be happy to research this if you can tell me where you read it. A bad EMG is, of course, possible. Standards for EMG technicians are not uniform across the country, much less the world, so I can’t say a bad EMG couldn’t happen. But sol long as neurologists rely on EMGs as the gold standard test for ALS, so will I. (I’ve had four dirty, and no clean.) Anybody who finds a case where a clean EMG is wrong, please let me know where you saw it and we can build a library of exceptions and present it to some neuro to help explain them.
 
How about blood work? Is it safe to say that the blood work for a person with ALS usually comes back normal. That there is nothing in the blood that identifies ALS? that the blood work is used to rule out other diseases? Or did any of you who have been diagnosed have any issues with blood work?
 
My husband's first EMG was clean
 
"it makes it sound like you just wake up one day and your hand won't work..."
You have to understand there is a difference between a "hand" not working and a "muscle" not working.

And yes, it is about failing. One day you may suddenly notice that you can't stand on your toes. It's not that your whole leg doesn't work. In fact, the rest of your leg will probably work fine--it's only when you fail at a certain act--walking on your heels, standing on your toes, jumping off the ground--that you suddenly realize that you have a problem.
it and we can build a library of exceptions and present it to some neuro to help explain them.

So then, if my husband had to use both hands to brush his teeth would that be considered failing? Or on-going weakness? What about driving? Did anyone have a hard time using their hands that it made driving uncomfortable, almost unbearable?
 
I'm just trying so hard to understand how a muscle just fails...it seems like it would have to have something going on with it before and during. Is that discomfort? Is that a growing weaker thing? Is it just different for everyone?
 
An EMG can show muscle disease which is different than motor neuron disease which is what ALS is. If they are talking about muscle biopsy it sounds like they are leaning that way. The EMGs are distinctly different.
Abnormal blood tests in ALS ? Not generally. Many tests are taken but it is in the hope of finding something else.
As Dusty says those claims of normal EMGs are mostly vague but some people I know to be genuine began with upper motor neuron disease which is found on physical exam and went on to develop lower motor neuron disease which is found on EMG. I do not know about your husbands case and the rest of this comment is to the DIHALS who are reading this. There is a major difference between seeing the neurologist and having a normal exam and EMG and being one of those people who have documented upper motor neuron disease that progresses to ALS with an abnormal EMG UMN symptoms can be severe and send someone to the neurologist but those people are not told they are fine even if their initial EMG is ok
 
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