The Age Old Question: Perceived Weakness Vs. Clinical Weakness

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max777

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I wanted to post this question so people who are worried about ALS can find either comfort or closure. The question of "perceived weakness vs. clinical weakness" seems to arise very often, yet despite many admirable answers, many participants of this forum seem to be left unconvinced and/or unsatisfied. I'll admit - I am one of them. Whereas I profoundly appreciate both the time and patience that the members here generously dedicate to responding to queries, I still believe the answers regarding "clinical weakness" vs. "perceived weakness" have left the fundamental concern unaddressed. What seems to cause many people (including myself) concern, is that BEFORE clinical weakness, wouldn't one have perceived weakness? I ask this because if someone had clinical weakness, he or she would most likely not be posting on this forum worried about ALS. If someone could detail the pre-clinical weakness felt by someone who has ALS, it would better address the concerns of those who have perceived weakness. Realistically, the real fear/thought many people have in this forum is that there must be weakness felt before clinical weakness is present. If anyone can describe what that weakness is like, and generally (I know it always varies) how quickly it becomes clinical weakness, I think it would greatly help everyone's concern about (and understanding of) this subject.

Cheers!
 

affected

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If you have perceived weakness, GO TO YOUR DOCTOR and find out if you have clinical weakness.

Pretty simple really.

If your doc says no weakness, then ask what is next and follow their advice and stop trying to diagnose yourself.

If you have perceived weakness and are not following through with a doctor but coming here or to doc goo gle, then you have something quite different to ALS.

Gosh, I hope that is clear?
 

max777

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Tillie, I didn't mean to offend you. I'm trying to get an answer to a question that does not seem to have been answered despite many posts.

I have been to a doctor, as have many people here. I do appreciate your answer, but it was not addressing my question. What many people are concerned about is this: BEFORE clinical weakness exists, wouldn't there be perceived weakness? Presumably, one does not wake up with drop foot or unable to button his or her buttons. What (if at all) is the typical weakness experienced by PALS BEFORE clinical weakness is evident?
 

affected

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Oh I'm not offended in the least :)

Actually yes, some PALS do literally wake up one morning with a dropped foot.

You are not really listening to my answer however.

If you have PERCEIVED weakness, keep working with your doctor rather than posting on a site like this hoping you can find a way to convince yourself that you have ALS. Truly the stickies and all the information on perceived versus clinical weakness are adequate information.

Everyone perceives some weakness in parts of their bodies at times, it may mean something is wrong it may not. It is CLINICAL weakness that a doctor uses as part of the diagnostic process.

I hope that by working with your doctor you can find some relief and answers
 
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Nikki J

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Max yes with ALS you DO wake up and find yourself unable to button something That was my sister's first sign. People with ALS do not present with I feel... They present with I can't
 

max777

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Your replies are much appreciated, and I am terribly sorry both of you have to deal with this awful disease (via loved-ones).

I do recognize one can wake up with clinical weakness, but presumably, there would have been some weakness before clinical weakness. Nikki, did your sister have no perceived weakness before her clinical weakness? I'm asking not just on my behalf, but on behalf of those who have been to doctors who claim no "clinical weakness," but who are worried that they are just "ahead of the curve," and that their perceived weakness is the first sign of ALS. I personally, know someone who said she felt weak before clinical weakness was established. She didn't know whether or not the doctor would have found clinical weakness at her first sign of perceived weakness, which is why I'm asking if most PALS never feel any weakness until clinical weakness, or if they do have some perceived weakness before clinical weakness appears.
 

Clearwater AL

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max777, "Psychosomatics ... disorder of the body ORIGINATING in or aggravated by the psychic or emotional processes of the individual... happens after they Google their first twitch, cramp, charlie horse after running 5 miles, lifting weights at the gym, hiking, playing soft ball and even some weird yoga class." (Whiners Dictionary)

Like 'affected' said, go to a doctor for a start, before fretting about feeling weak someplace, as being ALS. That's like going to Moon but going around Mars first.

Ok, I've just read your post above and understand what you're asking.
 

max777

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For the record, I've been to several doctors and am currently going through the motions of getting a diagnosis. I've had blood tests and an MRI.
I've had twitches for months and weakness in legs and shaking/weakness in my right hand. I'm asking not just on my behalf, but on behalf of every person who has posted asking about weakness, only to have the "clinical vs perceived" definition thrown at them, without indicating if any clinical weakness BEGINS with perceived weakness. I sincerely do appreciate your responses, but even on this thread, no one yet has answered if perceived weakness is felt in PALS before clinical weakness eventually sets in.
 

affected

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When you don't like an answer you are given, you say that you are not being answered.

Just because you presume that perceived weakness comes before clinical weakness does not make it so. 2 people have replied, that in fact, clinical weakness can hit fast and be the first symptom.

You can ask all day until you get the answer you presume you should get, but you should be at the doctors.
 

ottawa girl

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Max,

As a PALS and since I'm a former Westmounter - I will speak to my experience, to help you understand.

I had no "perceived" weakness in my hand ( where this whole thing started). Over a period of 16 months, I started dropping things ( coins, coffee cups, ski poles) and making keyboarding errors etc. I put it down to clumsiness, then lack of focus, then arthritis. In retrospect, I didn't know from perceived, clinical or other weakness. Frankly, I hadn't even noticed the obvious atrophy until it was pointed out to me. I was too busy living my fun packed life.

The day I couldn't button a blouse, was the day I called my GP. I still have fun life - but it's different now.
 

Nikki J

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To answer your question Max no my sister had no perceived weakness just could not button then could not open jar etc. like Elaine.

We are FALS and I am gene positive 96 percent chance of getting ALS. Because of that I am in a study where they take periodic tests and samples of blood spinal fluid etc etc. their hope is to find a biomarker that changes when ALS starts. They call me every three months in between visits to make sure I do not have a symptom They do not ask how I feel. They ask many questions about how I function. If they thought perceived weakness mattered they would definitely ask about it.
 

lovellholiday

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So clinical weakness wouldn't be something that you cn feel when laying down? For instance, ever since I've strted twitching I've experienced a burning sensation in every limb, sort of like how a feverwould feel, and am having noticible tremors.
 

Clearwater AL

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lovelholiday, you have no issues related to this Forum. You need to find a Forum that discusses ANXIETY and OBSESSIVE COMPULSIVE DISORDERS (OCD). You don't have ALS... yours symptoms are OCD! You're also becoming a P I T A.
 

lovellholiday

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I'm not entire sure of that yet, havebeen trying to find a connection to my twitches.I remember fatigue in mybckmuscles before this, but not anything alarming, and a few heavy lifting sessions at the gym a few weeks beforeistarted twitching
 
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