The Age Old Question: Perceived Weakness Vs. Clinical Weakness

[ottawa girl]

Lovell - you are hijacking Max's thread.

We have heard enough from you. Please read if you must, but keep silent otherwise.
Thank you for your cooperation.

 

[FSHolbrook]

can tell you that in my case I did notice a real weakness in my fore finger several months prior to being diagnosed with this nasty disease.

Rick

 

[ottawa girl]

Rick,

I get that - but how did you notice the forefinger weakness?

When I couldn't do up a button, I never thought of it as weakness - more of an (frustrating) inability. I wonder, might we be referring to the same thing but using different terminology?

 

[ottawa girl]

I have to admit this is getting entertaining...lol

It's not meant to be entertainment -

Think before you post.

 

[Mediasmart]

There also seems to be a fine line between perceived weakness and inability to do simple things. Neither are clinical weakness. I was fortunate to have an evaluation for ulnar nerve and carpal tunnel so there were any number of baseline "strength" tests comparing hand and arm, left and right. On whole, my left hand and arm are now at >5% of the strength of my right which has also started in on the progression. The feeling before (perceived) was in task management (typing, pulling on socks, etc.) but those factors aren't measurable.

 

[Kosmoskatten]

Before I did my EMG I was worried about what I perceived as weakness in my right arm and right leg. My EMG came out clean in those parts, but I still spoke to my neurologist about what the differences was, and I would like to convey his words, maybe that will help you as well;

"Perceived weakness is something you feel when at rest, or when you lift something up, for example your hairdryer. You can feel like your muscles are heavy, shaking, burning or like you can't work certain muscle groups at the gym for as long or as heavy as you usually do. But you can still run to the bus, run up the stairs and lift your kid into the car.

Clinical weakness is always followed by functional impairment, you can't lift your coffee cup, you can't button your shirt, you can't lift your leg over a object. Clinical weakness is also always assessed by a trained professional, and I have met so many people doing strength tests due to worry, up until the point when they can't lift that cup because they have overexhausted the muscle.

People with perceived weakness usually wonder if they are weak, they think about it, worry about it etc, if you have clinical weakness, there is nothing to wonder about really, you can't do things.

There are different stages of clinical weakness, and it does not always appear over night, but it is always to the point where there is real functional impairment. "

Once again stressing that these are words from my neurologist.

 

[bluedog]

Kosmoskatten,

That is a good concise explanation of perceived vs clinical weakness.

But what I think people want to know is, does perceived weakness sometimes occur before clinical weakness.

Perceived Weakness Only Example:

- I can use my hairdryer but my arm muscles burn and shake when I do.

Perceived Weakness Becomes Clinical Weakness Example:

1. I can use my hairdryer but my arm muscles burn and shake when I do.
2. Two weeks later, when I try to use my hairdryer my muscles burn and shake and I can only lift the hairdryer as high as my armpit so someone needs to dry my hair for me.
3. Three weeks later I can't lift the hairdryer at all.

Clinical Weakness Only Example:
1. One day I went to use my hairdryer and could only lift it 1 foot above the bathroom counter. All my muscles felt normal, but I couldn't lift the hairdryer more than 1 foot.
2. The next day I could only lift the hairdryer 6 inches above the counter although my muscles felt normal.
3. On day three, my muscles felt normal but I couldn't lift the hairdryer at all.

I think that people want reassurance that "Clinical Weakness Only Example" is what occurs in ALS and not the other two scenarios.

If perceived weakness can occur before clinical weakness, which I think the histories on this forum show, then there is little point in trying to reassure people that their weakness is only perceived.

 

[Atsugi]

Max: The answer to your question (from my perspective) is this. Weakness can be actual before it is perceived. My wife, who, as a doctor, was a trained observer, simply noticed that one day she tripped. She felt no weakness, but her scientific mind knew that one doesn't trip without a reason. She got an EMG done, which confirmed ALS very, very early in the progression.

I must join the chorus, however, that you're barking up the wrong tree. In medicine, they're taught that "when you hear hoof beats, you think of horses, not zebras." ALS is a rare zebra. There are a thousand other problems you might have. For your own mental health, focus on living life and don't focus on ALS--let your doctor be your guide.

 

[max777]

Thanks guys, I think this helps a lot of my questions. I wasn't trying to be irrationally concerned with ALS due to perceived weakness (I'll let the doctors sort everything out), and I apologize if it came across that way. I just have read many posts of people asking about perceived vs. clinical weakness and felt that when people only describe the differences between the two weaknesses, they don't address some concerns regarding the evolution of perceived weakness into clinical weakness.

I recognize now that clinical weakness can really be the first sign for some, and for others, they have some weakness that progresses into clinical weakness. If I may ask, for those that felt weakness before there was clinical weakness, how long did it take to progress into identifiable clinical weakness? I know it varies greatly from person to person, but it might help reassure some people on the forum who have perceived weakness for months (or years) and are still concerned with ALS. That being said, if we've exhausted the subject by now, I definitely understand and want to say thank you all for your bravery, time, and understanding.

 

[Tony292]

My experience having been diagnosed with MND and clinically possible ALS is that I did have some perceived weakness before it became clinical weakness. Some PALS progress extremely fast... I am extremely slow. With my left hand I began dropping things, noticed reduced grip strength, etc. I even passed a grip test on my left hand being within normal limits of the right hand a year ago, but 6 months ago I now can't open jars or lids with my left hand, and my grip strength is about half of what it was. The issues is that no neurologist ever bothered to test individual finger strength and only 2 of the fingers on my left hand are clinically weak, my pinky and ring finger, I have full range of motion with both, but I can't pick up or grip a thing with them., no strength at all. Now I am starting to notice perceived weakness in the other three fingers on The left hand so with my current extremely slow progression, it will probably take me 6-9 months before those three fingers get to get to the point they would be considered clinically weak.



I think my progression is slow due to my age 40, and my level of health prior to this point, I am in the Army, pretty physically fit and while I am declining rapidly by Army fitness standards, I am declining extremely slowly by PALS progression standards. It leaves me in a bit of a strange place as I don't fit neatly into either group... Still in the military able to walk but with foot drop, not able to run anymore, still able to fully function in my daily routine, but having just a little more of a decline every and having to make adjustments.... Although not with a hair dryer... I don't have to use on my my high and tight haircut. Buttoning is difficult, typing gets worse every day but only with the left hand, so I have had to cut my typing speed in half. Getting dressed can be a chore.... Driving is getting harder but still very manageable. I can still use the clutch on my car but it seems twice as hard to push in as it used to be (perceived weakness)... I LOVE my Dodge challenger with the 6 speed. It will have to trade it in when my left leg gets clinically weak to the point I can no longer push in the clutch at all.


I would say that ALS can go slow enough to effect muscles at the fiber level first and progressing to the point that most of the fibers lose nerve connection and render the muscle almost useless or clinically weak. Clinically weak can also be that say you can move a finger or limb against gravity, but not against any sort of resistance from the doctor. The push/pull tests neuros often do are on a sliding scale from 1-5 if I remember correctly, so it is a little bit objective.

Anyway, that is my 2 cents and I am nowhere near as experienced as most on this board.

Mod note. This person did not in fact have ALS. He was diagnosed with Myasthenia Gravis

 

[Tony292]

Mod note: This member did not end with having MND but insteand myasthenia gravis
I know some PALS can be extremely frustrated by all of the anxiety ridden hypochondriacs that Google their way here. I would be skeptical of every newbie too, but keep an open mind and don't fall into the fallacy that everyone here without a solid diagnosis is anxiety ridden hypochondriac. Some come here as I did looking for information with no anxiety or assumptions about their condition at all. Seeking clarification or information should be encouraged, this. Is after all what the internet is for.

I am quite the opposite of a hypochondriac, I have only had the flu twice in my life, always avoid docs, etc until I started having symptoms 18 months ago. I had no medical records at all aside from shot record for my first 39 years on this planet and now have amassed over 300 pages in the last year and a half. After 2 MRI (spinal/brain) with contrast, nerve conduction study, clean EMG (2 months after symptoms started), 2 EEG (one regular one sleep deprived), lumbar puncture and CSF analysis, too many blood labs to count, 2 neurologists, 2 neuromuscular specialists, one movement disorder specialist, DATSCAN, I finally had a very abnormal EMG a month ago. ALS and this forum were the last place and disease I ever wanted to have or to look up. On some level I had kind of been hoping it would be something, anything more treatable like MS . To be a PALS is no fun, and to be looking here because you and your doc have run out of other places to look is no fun either.

I did come here prior to getting the MND diagnosis and told the same... We can't diagnose you go back to your doctor. My doctor had been keeping me in the dark somewhat. When he broke the news of MND, he said I had brisk reflexes and a positive Babinski sign all along, I had no idea of either. I'm a Soldier and while I pay attention to most tests, I don't look at my feet when they scrape the soles to see if my toes pointed up or down. The doc didn't want me looking or even to know what the test was called because if I had known, maybe it would have influenced the outcome. Same with the Hoffman sign, positive but I didn't know what the test was or what my fingers should or shouldn't do.

My point is doctors often keep us ignorant of the tests they perform just so we don't fake the results. I know aft 18 months of guessing I was tired and just wanted to know what the hell was wrong with me... So I can sympathize with people who come here for answers or clarification purposes.

 

[AfraidButNotAlone]

I had ZERO "perceived" weakness. My first weakness was the INABILITY to pick grocery bags off the floor on to the counter.

 

[curtrill]

Tony292,

That was very well written. Thanks for taking the time to explain your situation so thoroughly.

Bluedog had a nicely done thread on this topic a few months ago. It was done in sort of a survey format. I only wished it would have received more participation. Feel like reposting that one, Bluedog?

Curtrill

 

[max777]

Tony,

Thank you for that incredible and well-worded description of your experience. That certainly helped answer my question (along with many others' questions too!). Best wishes to you, and thanks again for your post and for your service to our country!

Afraid&Alone,

Thanks for posting. It sounds like this disease really can strike without any (perceived) warning. My thoughts are with you.

 

[monster]

Max very good question

I've been experiencing perceived weakness (muscle fatigue- exercise intolerance, as my specialist call it) since about 2010. Never thought about it being a concern way back then until I was told about Als in 2011. It makes a person think back and remember.

Although I experience 'perceived' weakness, to different degrees, in many places, my left arm seems to be my worse. I sometimes limp when I over use my legs, but I pass all my clinical strength test.

I'm told I'm Fine, I do not have ALS/pls. I do believe my weakness is on it's way to a clinical stand point. I was told in 2012 I have upper motor neuron syndrome (hyperreflexia, Hoffman, and a jaw jerk sometimes) but the third specialist told me I had a clean clinical. Leaves a person stretching there head. Time will tell.

Tony292,

Thank you for such a thorough post! I don't want to hijack max's thread but I had a concern. Tony you stated that your symptoms started 18 months ago but you had a clean emg 2 months after your symptoms started? Your emg wasn't dirty till last month?

It's usually stated that the emg would pick up a problem before it's felt, it doesn't seem to be the case with you, that's my concern.

Could you explain your time line a little? It might help others who read this too.