Questioning BFS Diagnosis & Symptoms

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SlytherinSnow

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Alonzo -

Wonderful site. I do take issue with:

Your symtpom list excluding any real weakness.

You're definition of perceived weakness, fatigue.

I'm a long time BFS'er, if there is such a thing. In reality we all may have various forms of a neurological "glitch". I think it's innacurate to throw all of us into one group. On the other hand, without DX, what else is there? I have experienced real weakness, not progressive and not consistent for over 5 years. Now, you say roughly - "difficulty raising your arm one day but not the next" - how is that perceived? If it's perceived, you'd THINK you were having trouble raising your arm. Additionally, I have seen a description of this syndrome which includes weakness.

IMHO - You risk scaring the hell out of anyone who has any real weakness. They may feel that they don't belong here.

To anyone who may experience some weakness: I have it, as I said. I have 3 clean emg's in my hisory. I've never failed any test or neuro exam. DO NOT think that mild to moderate, transient, non-progressive weakness means you do not have a "benign" condition.
 
What do you mean when you talk about your real weakness. If you passed all neuro exams you do NOT have clinical weakness which is the only proof of real weakness.
What are symptoms of your weakness? If you have weakness in legs you should frequently fall. Do you? If you have weakness in hands you should drop things. Do you?

If you just feel weak but you still have ability to do all daily tasks it's not real weakness. Weakness is when you want to do something but you are not able to do it. No way to do it and doesn't matter how hard you will try. No strenght - game over.
That's my opinion.

regards
Marcin
 
Why does everyone like to attack Aarron, the guy does not have to come in here and deal with our sorry asses but he does. He has been such and inspiration for me. He is a terrific person with a big heart, do not get your panties in a bunch because he descirbed weakness in a way that did not suit you. Everyone's situation is different with BFS, the fact of the matter is you probably experience a certain level of fatigue but not weakness. I am no Einstein that is only my opinion, it is your body what Aarron says should not make a difference if you think and know you are okay then you most likely are. Do not cast stones at people who are trying to help. I do not think anyone here has gotton scared over any of Aarons posts, he is so easy going and reassuring when BFS is the subject.

GIVE THE MAN A FRIGGEN BREAK.


Kerri
 
You are wrong. You are citing examples of extreme weakness - falling, etc. Yes, some days, things are heavier. Yes, some days the door is harder to push open. Yes, I've hads the "dropsies". No, never during an exam. MILD weakness which comes and goes can be a part of this syndrome, that's what I'm saying. No strength - game over? Maybe YOU ought to have MY screen name.
 
Grym,

You said that your weakness had never apeared during neuro exam. What does it mean for you? For me it's a proof that you do not have weakness, because neurologists have their ways to check your real strenght. And if there is real weakness they would find it.

I am not an American so I don't know what does your screen name mean.

regards
Marcin
 
Pole -- where are there are diseases like MG which involve transient weakness, and I don't see any reason to believe that there might not be some 'benign' condition which can also cause sporadic weakness like that. I've never heard of ALS weakness being sporadic and non-progressive.

I think the Reeper makes a good point, though I also think it would be best for anyone who suffered from falling spells or attacks of weakness to see a neuro right off (for things like MG) rather than wait around and assume it's benign.
 
Ok, for you it is weakness, but if for neuros it is not weakness that means that is not weakness in medical meaning. And if so, weakness in clinical meaning is not a part of BFS.

And what about your screen name?

regards
M.
 
tl, good points, all. Yes, I have had about every test known to neurology. Certainly anyone experiencing weakness should see a doctor. Perhaps my post was poorly written as it appears to be misunderstood. My point is: don't give up and think the worst if you experience some weakness.

Pole - you found this site, surely you can find out about the grim reaper on the internet.
 
7tidalwave,
you are right, there are diseases like MG when patients have sporadic (come and go) weakness, but I don't think BFS is such a condition.
I dont tell that it is impossible for weakness to be sporadic at all. I wanted to say that it is impossible for ALS weakness and that in BFS we dont feel real clinical weakness.
regards
Marcin
 
Good morning Grymn - welcome to the site.

Since you are new here, let me fill you in on something. There are a number of us on this site that are VERY supportive of Alonzo, myself included. We had an episode a month or so back where "DaveYY" made some comments toward Alonzo that a few of us took exception to. So, some of us may still be smarting from that, although it's still no reason to jump on you...

That being said, I would agree with your statement, "MILD weakness which comes and goes can be a part of this syndrome, that's what I'm saying." I too have periods that for whatever reason I find it a little harder to climb the stairs, cut the grass, etc. Alonzo does mention in his "BFS in a Nutshell" that fatigue is also a symptom. I'm wondering if we are talking about the same thing (fatigue/weakness)?

Anyways, welcome to the site & thanks for sharing.

Sincerely,

Dale
 
Dale, thank you for your understanding reply. In no way was I attacking Alonzo. He's obviously a caring, motivated person.

Regarding fatigue vs. weakness, I have both. It is hard to describe the difference. Excersice intolerance is what I would describe as muscle fatigue. Arms getting too tired too fast when doing tasks which don't normall tire muscles, etc.

My weakness presents in a mild form and yes, comes and goes. In fact, I have fewer bouts now than ever.
 
I dont know how you are all getting so confused here, I think when Aaron was reffering to Weakness he was suggesting Atrophy, which with ALS is wasting of the muscles causing permenant progressive weakness.

I agree that "percieved" weakness is the wrong word to use when describing BFS, the word percieved would suggest "its all in your head", the kind of weakness ppl get with BFS is more associated with Muscle Fatigue, which as most of you know is muscles getting tired easily, which as a matter of fact can be a early symptom of ALS, but muscle faitgue can be a symptom of many things, none more so than Anxiety, so dont all jump to conclusions *cough*TheTrex*cough* ;)

So I can see where Grym is coming from, it was worthwhile pointing out that "percieved weakness" is the wrong word to describe muscle fatigue, which is common in BFS. However....Percieved weakness IS a very real symptom and problem of BFS, but most likely linked to the mental exhaustion due to the Anxiety, BFS or any Neurological illness can cause. Percieved Weakness is common in everyday non-ill people too...have none of you ever sat down after a long days work and just felt like you cant physically get back up, coz you are so exhausted and your muscles just dont feel like they would carry you?? Well thats what percieved weakness is.

hope this helped clear things up
 
Perhaps it would be helpful to abolish the term "perceived weakness" and just say that weakness is loss of function (i.e. not being able to do something such as hold a cup of coffee or button your shirt). If you don't have this then you probably have increased fatiguability of your muscles, which points to bfs rather than als.

David
 
Uber!!!!!!!!!
Man you guys know me like a book.

I wanted to just add to the weakness thing, tuesday when I saw the neuro I was so weak I mean I felt like I would not be able to complete any of the tests and I was sure that I was done for. I did fine with all of the tests. SOOOOOOOO that weakness was percieved because I actually was not weak at all.


Kerri
 
I have posted this before -- but anyway. I saw the head of the ALS clinic and he did not even ask me about weakness, perceived or otherwise. His criteria for worrying about ALS he called a "loss of strength" or an inability to do something you could normally do without a problem.

That is all -- I tend to agree with Pole on this thread. If it is not clinical weakness, then it is not the weakness we are talking about here.

RareAir
 

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