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Thanks Sadiemae! Great post! I would also like to see this as a sticky! Hopefully my neurology appointment and subsequent tests will alleviate my concerns and I'll run to BFS website quicker than you could wish me a Bon voyage! Take care, Sal x
 
What is the difference between "perceived" weakness and "clinical" weakness?



ALS is a nerve PATHWAY disease so if you have twitching and weakness BECAUSE of ALS in something like your little toe, and you get an EMG ANYWHERE BETWEEN that toe and your brain, it WILL show-up on the EMG because it is looking at the PATHWAYS BETWEEN that toe and your brain. ALS is also a body wide disease BEFORE it spreads to NOTICABLE symptoms. It is there long before 99% of the sufferer's even notice it, (contrary to what a lot of rookies will tell you). The twitching in ALS means it has already been there a while, has DONE damage and now the muscles are reacting by quivering. It is the whole enchilada that has to be looked at with CLINICAL weakness and a bad EMG. Without ALL of those symptoms (and then some), you have ALS about as much as someone with a common headache has a brain


Unfortunately, ALL of this is horribly, dead wrong. Please check your facts with experts before posting.
 
For anyone that might read and actually believe Evo, who can not be discouraged from ANYTHING due to their level of extreme anxiety, below are the facts from ANOTHER official ALS site--where doctors write the answers...to add to those already so kindly provided by sadie.

This information is from the ALSA and other official sources--not from anxiety-ridden panicking individuals.

The onset of ALS is insidious with muscle weakness or stiffness as early symptoms. Progression of weakness, wasting and paralysis of the muscles of the limbs and trunk as well as those that control vital functions such as speech, swallowing and later breathing generally follows.

The initial symptoms of ALS can be quite varied in different people. One person may experience tripping over carpet edges, another person may have trouble lifting and a third person's early symptom may be slurred speech. The rate at which ALS progresses can be quite variable from one person to another. Although the mean survival time with ALS is three to five years, many people live five, ten or more years. In a small number of people, ALS is known to remit or halt its progression, though there is no scientific understanding as to how and why this happens. Symptoms can begin in the muscles of speech, swallowing or in the hands, arms, legs or feet. Not all people with ALS experience the same symptoms or the same sequences or patterns of progression. But, progressive muscle weakness and paralysis are universally experienced.

Muscle weakness is a hallmark initial sign in ALS, occurring in approximately 60% of patients. Early symptoms vary with each individual, but usually include tripping, dropping things, abnormal fatigue of the arms and/or legs, slurred speech, muscle cramps and twitches and/or uncontrollable periods of laughing or crying.

The hands and feet may be affected first, causing difficulty in lifting, walking or using the hands for the activities of daily living such as dressing, washing and buttoning clothes.

* muscle weakness in one or more of the following: hands, arms, legs or the muscles of speech,
swallowing or breathing
* twitching (fasciculation) and cramping of muscles, especially those in the hands and feet (because the NERVE IS DAMAGED)
* impairment of the use of the arms and legs
* "thick speech" and difficulty in projecting the voice
* in more advanced stages, shortness of breath, difficulty in breathing and swallowing


What part of this are you not understanding, evo? Where is your documentation from an accepted source that the BS you're spouting over this forum are in any way 'true' in the slightest?

ALS is a disease of NERVES--these nerves affect the MUSCLES when they aren't being given a source to "MOVE" anymore. This causes them to atrophy and die away, as sadie and others have tired to explain.

Below is the answer of the ALS EXPERT:

Fasciculations (at least Motor Neuron fascics) are a sign of ongoing reinnervation and can actually begin distally in regenerated nerve fibers. By the time fascics develop in ALS, you should see a good deal of neurogenic potentials

Comment :

What do you mean by neurogenic potentials? Do you mean neurogenic units - the abnormal motor units (amplitude etc.)? Second, so according to your answer if a person fasciculates for months and It is due to ALS (malignant fasciculations)- His motor units should be abnormal (huge amplitude and so on)? How much time on average does it take from the beginning of ALS fasciculations to the appearance of abnormal motor units (neurogenic units)
* I am asking it because I have read that abnormal motor units (huge amplitude.) are more common with chronic long standing denervation

Answer :

Yes neurogenic units means polyphasic units, later on with high amplitude. In my experience, I see the neurogenic units before I see the fascics, or very close to them in time (THESE ARE ABNORMALITIES IN THE EMG)

This is taken from various OFFICIAL ALS Association websites--not from an anxious person trying to diagnose themselves.
 
Thanks Patty.
 
Sadiemae and Patti,

Thank you for those informative and spot-on posts regarding ALS!

Too bad someone shoots you down without giving any factual data to support their views.
 
I know, Kim, should have closed the thread before it got spammed!
 
Okay. this scenario was not discussed in your post.....

I have twitching all over but do not really have any other symptoms of ALS. I do not have WEAKNESS but I did test positive on the EMG for MND issues. Further testing to come....

Just curious if anyone with a confirmed diagnosis of ALS had twitching all over before they started feeling the WEAKNESS and other symptoms?
 
Jpsteeler99 you reported that you have foot drop. That is weakness.
 
Okay. this scenario was not discussed in your post.....

I have twitching all over but do not really have any other symptoms of ALS. I do not have WEAKNESS but I did test positive on the EMG for MND issues. Further testing to come....

Just curious if anyone with a confirmed diagnosis of ALS had twitching all over before they started feeling the WEAKNESS and other symptoms?

Dear, this is from the post you made (quoted below) These ARE signs of weakness. Feeling weak and BEING weak, as Sadie explained, are different. You ARE weak--you just don't feel it. Foot drop is caused by a failure of the muscle to support your ankle--ie: Weakness. The spasms and cramps are also signs--and even with this--we hope for a different diagnosis for you.

Look at the early signs listed above--in the bullets.

They just don't move right and I have some foot drop and instability. I also have fasciculations all over my body and they are constant(2-3 per second in every muscle all day long). I have muscle cramping in my calves, hands & feet mainly but in some other muscles as well. I may be having a little difficulty with my speech but nothing major.
 
Jpsteeler99 you reported that you have foot drop. That is weakness.

Yes, but the twitching is not in my foot. The twitching is in my legs, back, arms and shoulders. I didn't mention this before but I spraigned my left ankle pretty severly twice in one week and that is the foot with drop. In fact, that seem to set off most of the symptoms I am having. And it is not really bad at all. I can still walk on my tippy toes and heels no problem.
 
Again--yes--but you do have other signs--'don't move right' and 'foot drop' and 'twitches' and instability-- and abnormal EMG--all potential SIGNS...but even then, not a diagnosis until all else is ruled out.

EVO, or dear friend, believes twitches alone mean ALS--they do NOT. EMG changes will SHOW when twitches are present--as I believe they did in your case. The twitches are the muscles trying to 'fix' themselves--for a time they can--but then the reinervation process can no longer keep up and weakness sets in.

In BFS and other benign causes--the EMG doesn't show damage--unfortunately, yours did show issues consistent with MND--but you're a ways away from a diagnosis, right?

When a doc mentions the dreaded letters ALS or MND-- a sane person looks for ANYTHING else to be the issue. Most in the DO I HAVE section are already convinced--and come here for us to say "Yup, sounds like ALS to me, get thee post-haste to a doctor for confirmation."

Your doc mentioned it's possible--and has signs and symptoms that correlate with that potential--I say again--POTENTIAL--not guaranteed outcome. Read the list of things above:

Spasms
cramps
fasciculations
weakness (your ankle is weak if it drops--it just is--sorry)
abnormal EMG.


We all hope your outcome is something else, believe me, but enough signs are there for further testing to be not only warranted but highly recommended by me and probably every other regular poster here. Your issues match the ALSA information -- enough to cause concern, but hopefully not panic--as ALS and MANY other conditions have similar early signs.

EVO--again and yet again: fasciculations from ALS have a specific cause--not always so with benign twitches. As they do have a cause, it's correlated by EMG evidence and/or physical EXAM. You have 9 posts here--and not business guiding anyone with regard to 'answers' to questions. All you will do is start a rash of needless fear in other anxiety-ridden folks such as yourself.
 
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Well put, Patty!
 
JP, I would even suspect that the foot drop is what led to your sprains.
 
And I'd wonder if that's not exactly right, Deb :( Unfortunately, weakness in muscles very often leads to injuring them. -- but again--can have many causes.

Sadie had such a great idea here--too bad evo found it before it could be locked. I'm sorry I added to it, Sadie--it was perfect as was--I'm afraid I let my annoyance at evo lead me to find the 'official' documentation from experts to quote--from ALSA and other ALS known knowledgeable people, like the ALS doc I quoted the Q&A from above.
 
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