AdBlock Detected

Sure, ad-blocking software does a great job at blocking ads, but it also blocks some useful and important features of our website. For the best possible site experience and to help support our community please take a moment to disable your AdBlocker.

Actual vs Perceived Weakness?

Status
Not open for further replies.

rhythman

Active member
Joined
Oct 22, 2009
Messages
91
Reason
Learn about ALS
Country
CA
State
New Brunswick
Hi All

I hope everyone had a restful and happy holiday season.

I have not posted for a month because I promised myself, after heeding advice from wise people here, that I would stay off the internet. I've only been on to check e-mail daily. I'm posting today because I just came back from my doctor (GP) and have a question that you may be able to help me understand.

My GP went over the report that my neuro sent him after my mid Dec. exam. He said that the neuro wants 2 more mri's, another emg and a nvc test...all this will be within the first 2 weeks of February. Fine. He then said that the neuro report suggested that I have some results that are abnormal (first emg), but there does not seem to be muscle weakness. Huh?

I explained to the neuro that everything is 'heavier' than it used to be and lifting anything is harder than before. I gave him examples. Holding my little cell phone to my ear causes my delts to start burning after a couple of minutes. I can barely make it to the curb with a garbage bag in each hand before my traps and delts are screaming. While socializing and deep into a conversation, I'll become aware of my shoulders becoming sore and I'm only holding a beer. To me, this is progessive weakness and if I extrapolate this scenario, it seems that I won't be able to lift the beer (oh no!), or cell phone in a few months. He didn't seem to be concerned. He called that fatigue. He then had me push, pull, etc. and do a bunch of simple office tests and said my strength seemed fine. What? It's not fine...everything is harder to do and lift.

I had read about perceived versus actual weakness, but I really don't know what it is that I'm experiencing. The neuro left me with the impression that as long as I can do 1 rep...lift that cell, lift that beer...it's all good. If I'm getting 'weaker'-whatever that means-each week, it's not all good.

Thoughts on this weakness confusion? Thanks.
 
Last edited:

BethU

Extremely helpful member
Joined
May 11, 2008
Messages
2,644
Reason
PALS
Diagnosis
05/2008
Country
US
State
California
The way I experienced weakness was as the doctor described. One day, I couldn't lift a full kettle of water, simple as that. It wasn't that normally I could lift it 10 times but now I could only lift it 5 times. I couldn't lift it at all. So I had to start filling the kettle half way with water. That I could lift for a long time, but now, not at all.

The "fatigue" type of weakness is related to myasthenia gravis and other conditions ... your muscles weaken as you try to do a repetitive or an extended task (hammering a nail, carrying a trash bag) ... but after a rest, you are able to perform the task again for a while, then the muscle tires again. In your case, you continue to be able to lift your trash bags, but are tired by the time you reach the curb.

It's fatigue vs. weakness. Neurologically, they are different animals.
 

Zaphoon

Extremely helpful member
Joined
Aug 2, 2008
Messages
2,855
Reason
DX UMND/PLS
Diagnosis
08/2011
Country
US
State
Missouri
I agree with what Beth had to say, ALS causes permanent weakness.

Trust your neurologist and give him some time to sort things out for you. He has ordered additional testing which shows he has your welfare at heart.

I'm hoping the best for you!

Zaphoon
 

mare

Senior member
Joined
Jun 5, 2008
Messages
761
Reason
Lost a loved one
Country
US
State
PA
Beth-
Brillant description! Fatigue vs. weakness- they are different animals, neurologically speaking!

And I think unless one has neurological issues, they don't comprehend this.
 

hopingforcure

Very helpful member
Joined
Feb 14, 2008
Messages
1,420
Diagnosis
09/2007
Country
US
State
USA
Perceived Weakness is moving slow to get out of the way of a bus. Real Weakness is not being able to get out of the way of the bus at all.. You will know and a good neuro will get real weakness.
 

rhythman

Active member
Joined
Oct 22, 2009
Messages
91
Reason
Learn about ALS
Country
CA
State
New Brunswick
Wow! Great explanations guys.

Forgive my ignorance then, but why do descriptions of als suggest that it becomes increasingly more difficult to perform daily tasks like climbing stairs and brushing teeth, when it sounds like one day you can do these things and the next day you can't? This sounds much more incremental than progressive.

I shaved yesterday, but stopped twice to rest. Every week it is getting harder. What I mean by harder is that the muscles in my arms and shoulder 'burn' more and I must rest now. In als, can you shave normally one day, and then not lift the razor at all the next?
 

halfin

Senior member
Joined
Jun 29, 2009
Messages
540
Reason
PALS
Diagnosis
08/2009
Country
US
State
CA
Well for me the weakness manifests both ways. There are things I can't do at all with my hands, for example we have some spring loaded "chip clips" that are very strong and which I can no longer squeeze open with my fingers. There are things that I can do that are more difficult, for example opening a pop top can, I have to use a lot of strength. But I also fatigue more quickly. Say I was going to pick up a heavy suitcase, I might be able to manage it and it seems OK, but then my hands give way after a few seconds. Most of my weakness is in my hands, my arms are relatively strong and I don't have any problems shaving or things like that.

I do wonder when the doctors do those strength tests, they are so easy. You have to be really weak before you will be unable to resist the doctor's pushes and tugs. My hands are there, they fold up when he bends them and I can't stop it. But most everything else is still no problem.

Maybe one way the progressive weakness and difficulty happens is when it moves through your body. I've read that it is common for the weakness to start in hands or feet and then move up towards the trunk. So as your limbs get weaker, more and more things would be difficult.
 

trfogey

Very helpful member
Joined
Jan 31, 2008
Messages
2,017
Reason
PALS
Diagnosis
07/2007
Country
US
State
NC
Wow! Great explanations guys.

Forgive my ignorance then, but why do descriptions of als suggest that it becomes increasingly more difficult to perform daily tasks like climbing stairs and brushing teeth, when it sounds like one day you can do these things and the next day you can't? This sounds much more incremental than progressive.
rhythman,

The actual weakness manifested in an individual with ALS follows the pattern of motor neuron death. When a muscle is controlled by healthy motor neurons, the muscle operates normally. As the motor neurons come under attack by ALS, the muscle behaves abnormally and erratically. Sometimes it doesn't contract when we want it to. Sometimes it stays contracted when we want it to relax.

A simple movement, done in an ALS-afflicted limb, can be a veritable display of instantaneous improvisation as the pALS makes a group of tiny unconscious adjustments to compensate for lost muscular control. The patient notices more and more difficulty doing this same task over time, as more muscular control is lost. Finally, when the last motor neuron controlling the activity of a key muscle in the movement succumbs to the onslaught of ALS, that muscle can no longer do its job and the patient can no longer make the movement.

Movements and actions that require the coordinated usage of many muscles may take longer to lose simply because there are more alternative muscles available for the compensation stage of the progression. Movements and actions that require only one or two muscles would not have the extra muscles to use for compensatory changes and would tend to fail all at once.

As far as I know, the actual weakness and the muscle atrophy characteristic of ALS are the result of lower motor neuron death. The muscle is completely disconnected from the nervous system and will no longer function. It is paralyzed and begins to atrophy from disuse.

Please remember that when a doctor uses a term like weakness or atrophy, it has a specific meaning in a specific context. Take the word out of its context and its use may or may not be appropriate. That is what you are doing with many words that you see here and on other medical sites. How silly would you think I was if I sat down to talk music with you, but I insisted on using the non-musical definition of words used in the field of music. What locks do piano keys open? Do you like your drumsticks fried, baked, or boiled? How many people, or what kind of wood does it take to make a musical staff?

If you don't speak the lingo, you are going to get confused. And as long as you insist on not learning the lingo, you will stay confused. Reduced endurance is not actual weakness in the ALS context. Endurance is one attribute. Strength is another. Lack of one does not imply the lack of the other.
 

olly

Extremely helpful member
Joined
Jan 10, 2008
Messages
2,732
Reason
PALS
Diagnosis
11/2007
Country
uk
State
uk
hi rythman.
basically with muscle fatigue after rest a person is able to continue a task,this situation continues with no obvious degeneration of mobility over time.
with neurological weakness tasks that could be done eventually become impossible.

i have pls but also have both muscle fatigue and clinical weakness.
clinical weakness is a sign .....................to the neuro that there is neurological damage.
neuro's are highly trained to spot any neurological weakness .
 

BethU

Extremely helpful member
Joined
May 11, 2008
Messages
2,644
Reason
PALS
Diagnosis
05/2008
Country
US
State
California
Rhythman, as far as "increasing difficulty," that is true with fine motor skills. As trfogey says, there are many muscles involved in each action we take. I am still able to brush my teeth in a half-assed way, but cannot grip the brush normally, my thumbs are useless except for hitchhiking, cannot maneuver my wrist to get the brush in proper position, don't have the strength to floss more than a single up and down motion per tooth, when I manage that. Have to push the toothpaste out of the tube with my fist, cannot pick up the lid to replace it on the tube, etc.

Increased difficulty because the dozens of muscles involved are at different stages of paralysis, and these "simple" actions are in fact incredibly complex.

With my tea kettle example, I couldn't pick up a full kettle, but could pick up a half kettle full, then a quarter kettle full. We make all kinds of adjustments to our ways of doing things to keep functioning as long as possible. Many of them are unconscious.

Again, as trfogey said so clearly, the language neurologists use is very precise. The way when an engineer says a piece of metal is stressed, he doesn't mean it's having a bad day and is feeling weepy (although maybe it is). He's talking about a specific measurement of strength and the metal's ability to withstand x amount of forces against it.

It helps to try to get on the doctor's wavelength, and understand his terminology in a medical context, not the way the terms are used in casual conversation.
 

rhythman

Active member
Joined
Oct 22, 2009
Messages
91
Reason
Learn about ALS
Country
CA
State
New Brunswick
Thanks for the further explanations and examples. I do appreciate that the terms mean very specific things to the doctors and what I was asking here was for clarification so I could understand what I was being told. You all have done a great job.

I never thought of 'simple' tasks being so complex. The doctor did say he could clearly see significant atrophy at the base of my right thumb and the same thing starting on my left. I guess that's why my handwriting has deteriorated so much and I can barely tie shoes anymore unless I slow down like I'm just learning.

It's interesting that the right hand atrophy became apparent relatively recently, but reviewing some of my writings for the past year or so, I clearly had problems forming letters last March. I just didn't notice...it was subtle. I've read that the atrophy comes after some loss of function, but my tongue situation is weird. I have lost a large amount of tongue size. It was noticeable in October, but is unmistakable now. It's so, so much thinner and flatter, but my speech is fine. I slurred in the early Fall before any noticeable tongue change, but I've been able to speak clearly the past 2 months with my tongue shrinking very significantly. Odd.
 

rose

Extremely helpful member
Joined
Mar 29, 2008
Messages
2,879
Reason
DX MND
Diagnosis
7/2008
Country
US
State
Maryland
rhythman,

My neuro has told me that in able for her to detect clinical weakness, the patient would have had to have lost at least 60% of their normal strength.

As to your observation about tongue and speech; speech is as driven by upper motor neuron as lower, It is not just a weak tongue and lips that causes slurring. This is just from my own experience of having a weak tongue (and all of bulbar area) my voice is quite weak, but my speech is not all that bad. From what I can understand, with UMN problems, speech is slow, with jerky and imprecise articulation.

Here is an interesting link having to do with various forms of dysarthria:

Dysarthria
 

rhythman

Active member
Joined
Oct 22, 2009
Messages
91
Reason
Learn about ALS
Country
CA
State
New Brunswick
Thanks Rose. My GP did say in December that my Babinski and Hoffmann tests were normal. The neuro did these too and they were fine, and he said my reflexes were within normal range. Perhaps this suggests little or no umn involvement which might help explain why my speech is still fine and I can ramble on rapidly, as always. :)
 

AndyDJX

Distinguished member
Joined
Mar 4, 2009
Messages
257
Country
US
State
MA
I am also very much in the camp of "fatigue" weakness. Rhythman, the things you describe sound very familiar to me. I have definite atrophy in my right thumb/thenar area, and similar things starting to happen on the left. My muscles burn and fatigue much faster than they used to.

The other day I was photographing a musician onstage, and I had to squat down. It wasn't long before my legs were burning like I've never felt before, and I had to constantly adjust how I was positioned. I played a game on Wii that required multiple "pitching" motions...after one game I was fine, but after a few more I could barely lift the controller. Other people in the room had no trouble with it.

My EMGs have shown reduced nerve conduction, but otherwise normal at this point.
 

rhythman

Active member
Joined
Oct 22, 2009
Messages
91
Reason
Learn about ALS
Country
CA
State
New Brunswick
I was told first emg was abnormal, but I didn't ask for the details (I wouldn't understand anyway). I do have another emg set for mid February so I'll ask more questions this time.

How long has this been going on? Have you been diagnosed with anything?
 
Status
Not open for further replies.
Top

AdBlock Detected

We get it, advertisements are annoying!

Sure, ad-blocking software does a great job at blocking ads, but it also blocks some useful and important features of our website. For the best possible site experience please take a moment to disable your AdBlocker.

We appreciate your understanding and cooperation!

I've Disabled AdBlock
No Thanks