The Weakness Issue - Final Verdict?

[ALSBurger]

I have been having a lot of difficulty nailing down the answer to this one question.

"Does ALS ever start with twitching in the absence of clinical weakness?"

You may feel this is a closed topic, but from what I've seen, its not.

I have read more than two individuals on here who plainly stated their first symptom was twitching. Not weakness. Not atrophy. Of course the entire BFS community clings to the hope that its "impossible" to have twitching without clinical weakness AND ATROPHY ....

I really would like to know how accurate that is. Clearly there is some shade of gray. Probably a percentage. What is that percentage?

I just dont understand why certain people are making it a "rule" when it really doesn't seem to be. If I spend 10 minutes on here and found 2 diagnosed individuals who are the exception to that "rule" then surely there are more....

If it is a hard and fast rule, *WHY* to neurologists ask twitchers to come back in 3 months? Or 6 months? Or to follow up in a year? Why have some neurologists stated that they don't fully rule out ALS until the 2 year mark?

I am trying to differentiate between "feel good" comments that make people stop stressing.... versus *reality*.

Reality would be much appreciated.

 

[ALSBurger]

And one more issue:

Why would someone who was athletic and muscular ..... show any "clinical weakness" that fast? Seriously. The strength tests I hear about are almost humorous to me. Someone who goes to the gym and pushes even 45lb dumbbells a month prior, isnt going to fail on one of those strength tests a month later. Maybe someone who doesn't exercise. But no athletic person is going to degrade that far, that quickly. The weakness tests need to be different for different people. Clearly. But they're not.

 

[vzandt]

Because it is not easy to diagnose. They have you come back because they don't know yet. Not many here start the same exact way. Its not all cut and dried. The only thing we know for sure is the doctor needs to diagnose you. Hes the one with those answers.

 

[sadiemae]

Maybe the people didn't realize they had weakness. My husband for example worked a very strenuous job, and was getting older. He put the weakness off to that. His doctors give an onset date of ALS of 10-07. He didnt notice fasticulations till 10-08, didnt go to doctor until 9-09. He had his D X within 20 minutes. If a Doctor told these 2 people they had no weakness but did have fasticulations and ALS PM me with the info. Doctors tell people with no clinical weakness to come back in 3 months or a year, because without clinical weakness there is NO ALS.

 

[ALSBurger]

This is directly from the NIH web site: (National Institutes of Health)

"The onset of ALS may be so subtle that the symptoms are frequently overlooked. The earliest symptoms may include twitching, cramping, or stiffness of muscles; muscle weakness affecting an arm or a leg; slurred and nasal speech; or difficulty chewing or swallowing. These general complaints then develop into more obvious weakness or atrophy that may cause a physician to suspect ALS. "

There is a clear chronology described here. Comments?

 

[sadiemae]

This is the exact definition of perceived weakness.

Feeling like "things are heavier" but still being able to lift them AT ALL is perceived weakness, 'nuff said.

When we examine patients, the only TRUE clinical weakness is a SIGNIFICANT variation in strength from one side to the other, OR a complete inability to use the limb; ie, walk, grasp, etc.


Taken from about BFS.com

 

[vzandt]

My husband didn't notice weakness. He noticed he was falling. He said his foot didn't listen to his brain. He didn't say " I am weak". That's all I know.

 

[johnnyliverpool1]

if u wanna learn about the dreaded....i suggest you take a six month training course on the subject....or ask a neurologist would be easier.....but then again whats the point.....no known cause no known cure....u r batting in the dark, like everyone else.....god doesnt know either...if he did he would let on wouldnt he....or would he......reality is bunkum....johnny......

 

[ALSBurger]

I suppose I can just go read the reports from the newly diagnosed on here, but i am too afraid to.

An athletic person who lifts weights and ends up with worrysome bodywide spasms and twitching for a couple weeks .... isn't going to fail any strength tests. They're not going to fail any visual "muscle size" tests either. They're going to come off as "Extremely healthy", until maybe months down the road.

Correct or incorrect?

 

[Ms. Pie]

If you had clinical weakness you would fail even though you work out. And for that matter you wouldn't be able to easily work out. It doesn't matter how fit you were if you have ALS. What does your neurologist say?

 

[vzandt]

Extreamly healthy ....but falls down.....drops things....cant talk....,...
You really cant expect them to diagnose someone with only twitching with als. To many people twitch. It would be an epidemic

 

[CathyP]

One of the Steve Gleason videos where he is being interviewed and is asked how his ALS started I THINK I remember Steve saying he noticed twitching first. Please correct me if I am wrong.

 

[ALSBurger]

I find it hard to believe you're going to be dropping things as soon as you start twitching. Especially if you were working out heavy just a few weeks before.

SEe here's the problem - BFS people state they have exercise intolerance too. So working out is miserably difficult for them too.

I have gotten very weak myself when i actually go to the gym and try to push weight. But i dont drop things, or have problems opening jars of jelly. That seems so much later on in the process.

I have been twitching on my finger/thumb for two weeks and elbow, as well as bodywite pops and spasms all over calves and thighs, temple on my head, etc. All random.

 

[notme]

ALSBurger, what you are simply not getting is that everyone is different, as I said in my other post to you. Body wide twitching is just not, according to my neuro, a sign of ALS. She was concerned by the severe weakness and the minute fasciculations she observed under my skin that I didn't notice til they were pointed out.

People that do strength training are more prone to twitches because they arempushimg their muscles more.

I had a callus on my thumb joint from holding a mug of soda...apparently, I had been compensating for the loss,of,hand strength by allowing my joints to pick up the slack.

Yes, some notice twitches, and in hindsight, say, wow, I was twitching a year ago. 10 million others probably were, too. Doesn't make it clinically significant.

It's significant when it is accompanied by other signs and symptoms upon exam by a qualified neurologist.

No ome here would have thought they would have ALS other than the few here with the cloud of the genetic form. Most do t eve join until at least ome doctor tells them a MND is suspected.

What is it you would really like to know? Yes, it's possible that muscle cramping is an early sign of ALS. Yes, fasciculations in an area are as well. No, they aren't sure if it will develop into ALS, hence the wait and see. Generally, EMG will show changes months before a patient feels weakness, and I'm UMN, a doctor will note the abnormal reflexes or hypertonia or spasticity.

No two people are the same. The only sure thing about ALS is that it's progressive, with no known cure.

There are a Tom of things that cause cramping and twitches, most are harmless, others are treatable, others are ALS, or ...the list goes on.

Have you had an EMF? Was it clear? We're your strength tests normal? If all was okay when you went, listen to your doctors and enjoy life rather than obsessing on a rare diseases would be my suggestion.

 

[notme]

Off to moderation. Body wide is a good sign against ALS. And, no, trouble with things like opening jars and pushing weights wouldn't be late in the process necessarily, it would depend on the areas affected.

But, two weeks of random twitches is nothing to freak out about. The issues in your hand and elbow could be as simple as a trapped ulnar nerve.

The weakness tests doctors do detect subtle changes often not even noticed by the patient. And, just a tip, it's so much easier on readers if you contain all this in o e thread, especially since its the same topic as the thread you started yesterday pretty much.