weakness v fatigue question

[andm]

So bored of this

All... I'm kind of ashamed of writing here. I have looked at enough posts to understand the basic rule. If your worried go and see a neurologist. I understand the discussion about anxiety over this, and the irritation of people being paranoid and self diagnosing. I never want to be someone who has lost perspective over this.

So I have been to a neurologist. I live in indonesia. But I went to a doctor in Singapore where the medical facilities are excellent. He is a well regarded neurologist and experienced. A good one by all measures.

After being in his care, however, I'm left with questions and feel I have not been heard. Rather dismissed.

And it's so about the symptoms... fascilations... a yes... that general, vague symptom. If I was to summarise my symptoms it would be rapidly and ongoing stiffening of mussels and joints, clicking shoulders and knees, ankles becoming progressively less mobile and aching. Numbness. Pins and needles. I lost sensation entirely of my left arm at one point. . Seemingly quickly over the course of a year or so. And twitching.. in many places at different times and in one place in particular, my left calf. It is my left leg that seems to be getting less mobile over time. (I'm very conscious when I use the word seemingly). I'm 40 so relatively young. But exercising and playing sports is getting harder and harder. (I'm also conscious that I'm getting older). But it's all happening so quickly.

The neurologist looked at me and within five minutes said I'm 85 percent sure I know what's wrong with you. He then tested for a number of diseases, (std, lymes disease various tropical parasites.. etc etc.) He tested for MS. He did a brain scan emg as there was some concern over a resent motor bike injury. Then he came back to his initial diagnoses - generalised anxiety dissorder.

I accepted this. I was relieved. I didn't doubt what he said. I took the meds. Changed my lifestyle. Quit my job. Exercised. Trying to look after myself. Been working with a physiotherapist. I have been a little better. But now, I'm just worn out and don't know what to do. I'm 40. So I'm young in the context of these symptoms. My calf is twitching endlessly and as my ankles become stiffer and stiffer. He never once looked at the twitching. And he never did an EMF. He clearly felt in his judgement it was not needed. I respect that. But now, after three months of constant twitching im worried and don't know where to turn.

I have a video of the constant leg twitching calf. Is there anyway I can post it on here so that you experienced folk can tell me if I need to get a second opinion or not.

I'm so bored of this. And I don't want to be that annoying guy who is constantly looking for signs and symptoms of something he doesn't have! But nonetheless I'm tired of my body feeling like it is continually deteriorating. I feel at my wits end..

 

[andm]

I very much appreciate all the helpful posts on this question. It is very helpful and easy to understand the differences between perceived and actual weakness. The only question I have, which I have not so far found a question to, is about the path to clinical weakness. That is: true clinical weakness presumably does not occur overnight. Or does it? Is there not a progressive change that leads to clinical weakness? What are the stages of this and how quickly does it occur. Is that a fair question?

Based on the information here, I can safely say I have none if the symptoms of clinics
weakness. But I feel like my body is progressively and constantly moving that way. I think that might summarise the nagging question mark that annoying folks like myself come back to on the question of weakness v perceived weakness. Does anyone have any info on the stages and timeframe to clinical weakness? Would be useful for some of the annoying paranoid folks like myself to understand this better.

I have been to see a neurologist. I'm happy with his non als diagnosis. However I'm considering a second opinion as my symptoms continue to progress.

 

[Kosmoskatten]

https://www.alsforums.com/forum/do-i-have-als-als/21587-new-people-muscle-fatigue-vs-weakness.html

 

[andm]

Thanks. I red this. It is helpful. I don't have clinical weakness. However, I'm still not sure I understand the path, stages or timeframe to clinical weakness. Is the clinical onset abrupt and sudden. Or does it arrive gradually. If so how does the 'in between' stage present.

 

[Dusty7]

There are about 300 skeletal muscles in the human body. Since you don't know which one is going to show clinical weakness first, you would have to be watching every muscle to notice the first sign of clinical weakness. And if you are doing that, I'd say you have severe health anxiety and need medical care for that immediately.

It is far, far, far more likely that you would not notice a problem until that muscle fails. ("ALS is about failing, not feeling.")

Also, you generally lose 70% of the nerve fibers to a muscle before you will feel weakness. (Which is why an EMG can detect the problem long before you can feel it.)

"Is the clinical onset abrupt and sudden. Or does it arrive gradually. If so how does the 'in between' stage present."
I would say that for most people the onset is unnoticed because they are living their life and not obsessing about each muscle in their body. They don't notice a problem until they can't do something--can't stand on their toes, can't grip anything between their thumb and index finger, etc.

 

[Dusty7]

My first clinical weakness, I think, was the inability to do a calf raise. Did I notice it right away? No, because I don't do calf raises every day. This also meant I couldn't stand on my toes... but I don't try to stand on my toes every day either.

I also had foot drop. The first time it caused me to stumble, I probably just thought it was due to an uneven sidewalk. Or if I was walking on the beach, perhaps I thought I just didn't pick my foot up and my gym shoe caught on the wet sand.

Did I think I had lost the ability to plantar flex my ankle, or that I had foot drop, and run off to my PCP. No, I thought the calf thing was kind of weird and I spent extra time on my calves trying to build my strength back up. After six months with no improvement, it made it to my list of things to mention at my next annual physical. The stumbling from foot drop I figured was kind of normal, just told myself to lift my foot higher and be careful on uneven sidewalks.

So, when my clinical weakness started, I didn't even know it had started. The diagnosis was a year later. Was I losing nerve fibers before I noticed the loss of function? I'm sure I was, but I sure didn't notice it. Perhaps because I wasn't looking for it.

 

[MaxEidswick]

at: my first clinical weakness we saw was the result of a stroke. It wasn't until 18 months later that Dr. Appel gave me the ALS sentence. That was 10 months ago now I can hardly speak hardly swallow left arm is useless right arm is becoming useless day by day.

My job at HP has been adjusted from being a senior UEFI firmware engineer, to developing patent for our intelligent enterprise server data centers.

Hopefully this work will give me and the time to find Sandy a new home and to get a mortgage.

I think that it's impossible to confuse clinical weakness with imaginary weakness. For example your arm is just too damn heavy to pick up.

For what it's worth,

Max

 

[FrenchFries]

Hello everyone!

Max and, Dusty7, may I ask you one precision?

Max, You said 10 months after your diagnosis, your left, and later your right arm were going weaker day by day. I guess admn is trying to find out how to identify if in the beginning, the "imaginery weakness" or fatigue could look like the start of a true clinical weakness.

Dusty said that someone will notice something he could not do anymore. But I guess the problem of the stiky post you mentionned (https://www.alsforums.com/forum/do-i-have-als-als/21587-new-people-muscle-fatigue-vs-weakness.html) is that "perceived weakness" could be the beginning to "True Weakness".

What do you think?

Blessing from france to all of you!

david

 

[Nikki J]

The point of that sticky is that the first thing noticed in ALS is a failure of something to work. My sister could not button her shirt. My ankle does not hold me up and I fall over. She did not feel weak. I still do not feel weak. As Dusty said he could not do a calf raise. If you refer to those people who posted later in the thread you will notice neither returned to the board with a confirmed ALS diagnosis

 

[MaxEidswick]

>is that "perceived weakness" could be the beginning to "True Weakness".

my left arm/hand are useless and my right hand fingers work ok kinda, but the hand is getting to heavy to get to the keyboard :-(

 

[Atsugi]

My PALS didn't "feel" weak; she simply fell over. That was her first symptom. She never "felt weak"; she just lost the ability to walk without a cane.

 

[Kosmoskatten]

This is actually something that is quite hard to explain on a forum, when I learned about it it med school, it was hard to envision before you met an actual patient with clinical weakness.

Not all patients wake up not being able to do a calf raise for instance, but it is much more common than you think that the change is drastic. But even if the change is smaller, the key word as someone already said is, inability.

Inability to button a shirt, tie your shoe, lift the kettle.

In perceived weakness the question is often; "I can't lift my weights as many repetitions as I used to at the gym", "I can't walk as far as I used to without being tired". "I get tired when I blow dry my hair".

In ALS you can't lift a weight, you stumble or fall when you walk, you can't lift your arm over your head to hold the blow dryer.

The difference is very pronounced, and clinical weakness, even slighter, is always diagnosed by a neurologist. They can tell the difference. Trust your doctor.

 

[monster]

I honestly was confused too when trying to understand the process. I don't have clinical weakness but I
Am told to come back to check for progression every 6 months.

In my opinion if your neurologist thinks there is a true problem he/she would have you
Come back on a continual schedule to check progression and rule out other causes.

 

[FrenchFries]

"In perceived weakness the question is often; "I can't lift my weights as many repetitions as I used to at the gym", "I can't walk as far as I used to without being tired". "I get tired when I blow dry my hair".

So, If i understand your point : when you perceive your weakness as you describe, it's not ALS?

In ALS you can't lift a weight, you stumble or fall when you walk, you can't lift your arm over your head to hold the blow dryer."

To me, before you can't lift your arm over your head, you must feel something progressively wrong or strange when carrying stuff, moving... ALS is a progressive disease, so, I don't manage to understand this ON/OFF vision of weakness description.

I think the stickies might be a little too assertives concerning some of the disease statements, especially towards weakness and sensitivity symptoms topics....

 

[MaxEidswick]

>ALS is a progressive disease, so, I don't manage to understand this ON/OFF vision of weakness description.

in the case of ALS there is no off. I think the on/off discussion has to do with perceived weakness. Once our muscles atrophy, they don't come back. Any sort of muscle tearing activity like weight lifting just speeds up the process and is like rushing to the gallows for people with ALS.


>I think the stickies might be a little too assertives concerning some of the disease statements, especially towards weakness and sensitivity symptoms topics...

they really aren't too assertive. Most of the Do I Have ALS visitors imagine ALS like symptoms and/or allow health anxiety to compound their fears.

You have to realize we are special people, and not everyone deserves to get ALS. eat your heart out