Paper about not-so-benign fasciculations

[Yuliasir]

Grinch had snatched not only Xmas, as far as I see

[rutra80]

I'm to some extent on RobJ "side" here. Lets face it, science doesn't know *beep* about ALS yet, and about BFS is known even less. This forum (and ALS forums too) are biased toward comforting everyone, sometimes blindly. It's very well understandable, only few are able to not get onto an edge of psychical breakdown in conditions such as ours. But there are people who would rather want to know the truth, even painful one, than being comforted. Such seekers of painful truth, as well as those who comfort no matter what, don't seem to realise that THERE IS NO "TRUTH". The facts:

1. As I already stated very little is known about ALS and even less about BFS - diagnosis is a cloudy process, and many people (for example here in Poland) die with SUSPICION because some formal provision of legal diagnosis wasn't met, I even have a paper of local professor admitting so.

2. ALS cases vary greatly - there are cases (most, probably) when someone starts with weakness then has fasciculations and dies in a year or two, and there very well are the cases when someone has obvious problems while EMG is still fine but finally ALS is diagnosed (oh how many times on ALS forums I read that "my first EMGs were fine"), often because of the next point:

3. There are physicians and "physicians". From my own experience I know that it's actually pretty hard to find someone who will do an EMG without obvious flaws. Or in my case at all.

Being aware of the above I personally am annoyed by all the comforting and repeating like mantra "your EMG is fine and weakness is first! weakness is first! Always!", but then I do realize that many people would completely break down if they didn't have something to hold on to. IMO the closest to truth is that at the current level of knowledge about these conditions, ONLY TIME WILL SHOW what is on with you. 3-5 years. Do your best to find some really good physician, do EMG every year or a half, plus other tests, and if they're fine, you're most probably fine. As for if the above is universally the best way to come to people, I'm not the one to tell. Personally a year ago I was the "seeker of truth", now having increased spasticity and some weird cellulit on some of my muscles, I feel better when I'm not sure - suspecting that EMG could show something bad, I'm not planning to repeat one, because right now I'm doing quite well living in mindful uncertainty - knowing otherwise would really be the beginning of the end. Hopefully I won't be the one on this forum to prove that one can be legally fine for this long... Though you can always comfort yourselves that I'm one of the few who had someone with ALS in family...

[TwitchyDoc]

Well said.

We do not even know why exactly fasciculations appear in ALS and where (for god sake, recent clues suggest that they can actually be of upper motor neuron origin, something that would sound incredibly wrong 5 years ago), changing the foundation of we "think" we know.

[RobJ]

Yes well said. Finally someone understands my point.

There are a group of individuals on this sight that remind me of North Korea. We only want you to listen to what we say. Then what's alarming, which I suspected but just drove out of them, they've got nothing to show for what they say. They've got the same studies that we can google. That's another thing, stay off the sights, don't google, but they can go to the sights and they can google. It's a power trip. He who controls the information controls all.

Look at their past posts, their experience is BFS itself, some of them, never officially diagnosed, and some of them stopped seeing their neurologist because they didn't want to know? Listen to your neurologist? And they make these statements like they are fact, you challenge it a bit and you are a newbie, a flamer (which I'm alarmed Garym didn't connect the dots on that, I mention gynecomastia and then someone calls me a flamer and that post is allowed to stay), not in touch with reality. Look at their replies! Then a moderator mentions he's watching me, are you watching the people that have reverted to name calling?

These same people that tell people not to worry, worry just like you. Why? because the literature is sparse. The time of onset of ALS is really not known. Studies have attempted but it's too sparse over too much time. But I do believe weakness comes first before twitching, I do. People tend, especially men, to ignore the signs.

The landlord example is what I've seen, someone I talked with. I'm betting if you looked at his medical record it would say diagnosis to death in 3 months. But I'm betting he had ALS not only 5 years before, but longer, I'm not certain, but I'd bet he'd contribute his weakness to old age.

Go to the AL$ sight, plenty of them have mentioned twitching well before weakness, but again, I'll say it again so I'm clear, I believe they had weakness first. I ask over and over and over, are you sure no weakness prior?

It's similar to hearing about someone who unexpectedly died of a heart attack that had no signs. They sure did have signs, they just didn't tell anyone. I know myself, if I had weakness, I'm not sure I'd tell my neurologist and go through all that crap again.

[TwitchyDoc]

You summed it perfectly, RobJ.

And good point about weakness a person is not aware of - remember the poor guy on this site who developed MND? He did not know about the weakness in his finger, he came here because he had twitches and cramps...So this certainly accounts for some cases of "twitching first".

But another MND case on this site, Prattstar, was diagnosed with no clinical weakness but clear EMG readings (and twitches and cramps). Someone said you cannot be diagnosed with ALS without weakness - you certainly can be, weakness appears when about 3/4 of motor neurons are lost which is clearly demonstrated by EMG and can manifest as fasciculations/cramps. Which was apparently this case.

[J4son]

This forum reminds me of some bipolar patient who cyclically jumps from euphoria to deep depression. So you have the “you’re ok get a life” threads, followed by the “you’re completely doomed prepare you will” threads. BTW this is not a BFS forum nor an ALS forum, nor a forum for people in the process of being diagnosed with ALS or BFS. This is a forum about people who have one purpose in life which is to challenge a diagnosis made by a neurologist. So we have a patient who complains about twitching, who is diagnosed with a benign condition by a specialist, and who then joins other people here to prove that his neurologist doesn’t have a clue about neurology. Maybe we can find this attitude for every medical condition. Maybe there is a forum somewhere for people who thinks they have stomach cancer, and after seeing a gastroenterologist, and getting a clean endoscopy and a clean diagnosis, they all gather online to challenge these resuls.

- So 5000 members here with twitching none of them developing ALS except 2 or 3 cases that were suspicious to their own doctors from the very beginning – Bull$$ hit
- Mayo clinic who said a clinical and an EMG are enough to reassure a patient – Mayo clinic doesn’t know about neurology.
- Mayo clinic follow up of patients with BFS for decades with 0% developing ALS – the study is a flaw.
- Eisen’s first study founding that the timeframe between twitching and ALS is around a year as a maximum – Dismissed.
- Eisen’s second study finding the same results – Dismissed also.
- A study showing a strong link between BFS and anxiety, depression, neuroticism etc. – Dismissed also.
- Prof. Carvalho saying he was never mistaken in his diagnosis of benign twitching vs. malignant twitching - Fake!

The only thing that have value for people here are what some dude writes on his blog, about his miserable story of twitching for years before weakness. Now, this becomes science, proof, knowledge and the absolute truth.

This is why many people quit this board. Nothing is 100% sure in the medical. And of course doctors don’t know everything, but they know enough to draw a picture that would be accurate in 99% of the time.

Many studies had been reported on this board, many people on this board went to the best neurologists in the world (at Mayo, Cleveland clinic etc.) and came back here and took time to report what those top neurologists have said, everything can be found in the archives. Yet, no one here seems interested to listen or to give any importance to this, and they all prefer to believe and trust an ill omen like RobJ, or some other anxious or depressed member here, or some ALS patient writing on a forum a story that he sees from his own perspective.

Really I wonder why some people waste their time here trying to reassure newbies. Let’s put a sticky somewhere saying: “Newbie, your doctor is a liar, your neurologist who gave you a diagnosis is incompetent, no medical center in the world has a clue about ALS, BFS or unicorns, EMGs are useless, clinical is unusable, your only option is to wait 10 or better 15 years, and then if you’re still ok you’ll get the BFS label from our website!” it will make everybody’s life easier.

[RobJ]

So 5000 members here with twitching none of them developing ALS except 2 or 3 cases that were suspicious to their own doctors from the very beginning – Bull$$ hit
- Mayo clinic who said a clinical and an EMG are enough to reassure a patient – Mayo clinic doesn’t know about neurology.
- Mayo clinic follow up of patients with BFS for decades with 0% developing ALS – the study is a flaw.
- Eisen’s first study founding that the timeframe between twitching and ALS is around a year as a maximum – Dismissed.
- Eisen’s second study finding the same results – Dismissed also.
- A study showing a strong link between BFS and anxiety, depression, neuroticism etc. – Dismissed also.
- Prof. Carvalho saying he was never mistaken in his diagnosis of benign twitching vs. malignant twitching - Fake!

I'm glad others can see it. I'm not saying that those are incorrect. I never said that. I'm saying there are other studies that say other things.

The MAYO Clinic. Have you ever gone in for surgery to the "best". Have you ever actually met that guy, that person that makes the clinic what it is? I've got a great story. My Dad had prostate cancer when it the news about it broke out about it back in the 90's. My sister who is a statistician and works for all the major hospitals in Boston including the VA hospital.....who publishes in PUBMED and others, which was discredited by someone. I printed the post and gave it to her to see if what that person said had any merit. There post was made up. She's working on studying the aging process on the human body, studies veterans and others and has seen a few AL$ patients......My sister is why I've communicated with some of the best. She had my Dad see the best at the time in Brigham's and Women's hospital. This guy laid out the entire procedure what was going to occur what might happen, his chances of survival, etc. etc....then he goes on to say, BTW I don't do any of the surgery or follow up...I just consult....what? Yup, this is a teaching hospital and I'll be observing the procedure but I won't be doing it.......LET"S BE CLEAR, I'M NOT SAYING THE MAYO CLINIC IS BAD. It was the BEST cardiologist in the world at the time in Boston that said Reggie Lewis a celtics basketball star was cleared to play when he died a few days later.

My father in law had a stroke, went into Tuft's hospital, to see the one of the world's best rated neurosurgeons. He was in the hospital for 8 days while they evaluated him to see if he would meet the criteria to be seen by this Godly surgeon. Never saw the surgeon, didn't meet the criteria. He was sent home? They were afraid that his statistic would hurt their reputation.

What's my point, my point is that people make mistakes, data can be manipulated, you can't say one group is wrong and one is right. You need to look at both sides and draw your own conclusions, of course your doctor helps you and you should listen but it doesn't mean other data doesn't exist....

I'll END WITH LET's BE CLEAR, I'M NOT SAYING TWITCHING PRECEDES WEAKNESS, I'M NOT SAYING DR. EISEN OR DR. CARVALHO ARE WRONG, I'M IN AGREEMENT BUT I'M ALSO IN AGREEMENT WITH OTHER STUDIES.

[bobajojo]

J4son,

I completely agree with you. After you listed Eisen's 1st study and Eisen's 2nd study, you could have also listed an email to a member on here FROM EISEN HIMSELF.

For someone to come on here and say, "IMO the closest to truth is that at the current level of knowledge about these conditions, ONLY TIME WILL SHOW what is on with you. 3-5 years. Do your best to find some really good physician, do EMG every year or a half" just *beep* me off. Who are the ones being ignorant? Who are the ones covering their eyes to mounds of evidence? They would like you to believe its us veterans who all wish we had listened to our neurologists from the start and not wasted years of our lives.

And Docen, your posts today are exactly the same posts as the first day I ever joined this site back in 2011. You were convinced you had bulbar ALS and you had all the studies to prove it. Then two years later, your ALS spread to your hand where there was clear atrophy. That was back in 2013 I believe. How are you doing now? I know you get angry at me for calling you out on here and I seem to have been doing it a lot lately. But your posts are maddening. Clearly a case of intense anxiety and I really wished that by now, after 7 years of BFS, you would atleast be starting to realize that maybe this is benign. To the newbies out there, think about that, SEVEN YEARS on here.

Now I understand rutra80 started by saying "IMO" and that's fine. But lets keep in mind this is the opinion of someone who has absolutely no neurological training whatsoever and is probably dealing with their own mental issues, mainly anxiety.

I have vowed to leave this site hundreds of times. I hate it. I hate coming on here and reading BS posts from people who think they know way more than they do. The one thing that draws me back is the newbies. I remember what it was like for me in the beginning. The total mental torture of thinking you have something awful. I remember looking at my young kids and feeling so desperate. I remember it so clearly. I want to help the people who come on here and who are dealing with what I went through back then. I want to tell them that this thing really is benign. Our bodies can do f'd up things and it can happen overnight. It can twitch all over, our tongues can twitch daily, our muscles can feel weak, they can ache. All of this can be and is 100% benign, especially if you've been to a neurologist. I want to put my hand on each and every newbies shoulder and tell them, "You're going to be OK".

But instead, I come on here and read so much crap that its impossible to reassure the newbies to the truth. I don't know why I keep fighting you guys. You're flat out wrong with what you are saying. If "ONLY TIME WILL SHOW" is true. If that's true, then show me the twitchers who waited it out for 3 to 5 years and had a bad outcome. There should be hundreds of them who came thru this site then right?

*beep*. You guys can all kiss my ass. I can't fix stupid.

-Matt

[raindog]

The reason why nobody knows whats actually going off with each person is that medicine and Neurology has not achieved much in the way knowing or curing these diseases since they named them hundreds of years ago. And I would wager a big bet that they will be in the same position in a hundred years time ie No cures for MND, Parkinsons, MS etc

If you want to spend half your life thinking that as a sufferer of these illnesses you can solve the puzzle of twitching and progression to MND then good luck to you, but for what time ive got on this earth i would rather spend it doing the things i enjoy doing with my family and friends.

I'd consider myself as bad as anybody here if not worse, Ive never had a normal emg or neurology exam and the best advice i can give to anyone here is to self help yourself and move on. Laughter is the best medicine of all.

[rutra80]

“Newbie, your doctor is a liar, your neurologist who gave you a diagnosis is incompetent, no medical center in the world has a clue about ALS, BFS or unicorns, EMGs are useless, clinical is unusable, your only option is to wait 10 or better 15 years, and then if you’re still ok you’ll get the BFS label from our website!”

Are you manipulating my words here? Let me do the same with you:
"Newbie, blindly trust your doctor even if he/she makes an impression of being incompetent. Your impressions about other people are always useless. All the neurologists are infallible. Even shaman in the middle of Ethiopia knows enough about ALS, BFS, and quantum mechanics. There's no point in doing several EMGs, one good is more than enough, clinical alone would suffice, since it was done as much as 2 weeks after your fasciculations started. Welcome, glad we could make your life easier!"

[RobJ]

If you want to spend half your life thinking that as a sufferer of these illnesses you can solve the puzzle of twitching and progression to MND then good luck to you

Raindog,

What are you trying to say?

[mommylondon]

I can not believe the bull *hit I am reading on this thread.....It honestly pis8es me off and saddens me at the same time....It makes me sad because this site at one point saved my life and others I'm sure as well would attest to that....But that was 5 yrs ago...We had some really great, caring people here who were very smart and sensitive to the fear this condition can bring, and we all pulled together to help eachother out.....These days I rarely come here except to check my PM's....I just remain quiet because I dont even recognize this place anymore....It has completely been ran over with fear and doubt and people who think they know more then Neuro's and even some of the top Neuro's in the country....It absolutely amazes me how stupid some of you are....

I stopped posting here on the regular about 2 or 3 yrs ago, and started helping newbies behind the scenes....Started my own chat room for them all to talk safely and not be slammed with bad info on the regs so they could start to get better and almost all of them have moved on from here and the BFS population and got on with their lives....I can not tell you how many messes from posters like Twitchydoc ect ...that I have had to clean up, stop someone from just saying "screw it" and ending it all....Its absolutely pathetic Posters like RobJ, Twitchydoc and some others...how badly these guys (and some women) can just completely annihilate someones hope for getting better...This is a benign condition , and that has been proven over and over again through the years..I cant believe some of these guys are allowed to stay on this site and just sit back and ruin peoples lives the way they do...Its very sad.

I agree totally and completely with everything Matt and J4son have said...and I pray those are the type of posters that newbies listen to....Not this bull *hit from posters who could care less who's life they ruin with their fear mongering...

I still feel like if someone reads back enough in to the older posts on this site, they will find the reassurance they need....but they will have to paddle through all of this crap to get to those posts...This site does have some good information for newbies and it "can" be a true lifeline to someone who isnt easily swayed by bad informative posters...It just sux thats about all that is here on this site anymore...

[rutra80]

bobajojo you're citing me and then cut the sentence in the middle where I say that one should do EMGs as long as it reassures him/her that (s)he's fine. What on earth makes you think that YOUR claims about something being benign or not will come to anyones mind more than EMG? You accuse me of being smarter than neuro but that's what you do! How the hell you expect people to get rid of all the anxiety because of your words? Did your anxiety go away when others were comforting you? Is your anxiety all gone now? I guess not. And it isn't for others. And it won't be. Everyone must learn how to live with it by themselves, and IT TAKES TIME, and different things help different people. There's many people who have critical approach to life, and your claims about something so barely known being 100% certain only makes them more wary and anxious, especially when there are such an aggresivve reactions when they keep questioning. For such people objective knowledge with all the exceptions and special cases is much more precious than any comforting claims.

[RobJ]

Yes Rutra, he manipulated your words.

People don't read the entire thread, they read partially one post, draw a conclusion then you look like the bad guy because others reply with their interpretation.

He threw in another item that said someone's goal was to challenge what a neurologist said. I do challenge my doctors. I'm sure glad I do, if I didn't I would have had several muscle biopsies, several spinal taps, more EMG's, more MRI's, more CT's, etc.....

It was my challenge of my daughter's doctors and my search in google that discovered her issue. He had a rear non-malignant bone tumor. We took her all the way to the Children's Hospital in Boston and it took continued work to keep this doctor interested in finding what was wrong with her leg versus it being in her head!

It was my sisters' and mine determination and challenging to get my Dad out of this area and into Boston to see the best for his prostate cancer. If he had the surgery in this area he would never have another erection....the doctor in this area said the boston doctor had less success at curing than him?

It was my persistence with my son that got him to see a Kidney specialist versus it's nothing, young men have elevated protein in their urine, it's common.

It's OK to challenge all doctors except a neurologist that says you are OK?

[J4son]

@Rutra80,

With all due respect I wasn't answering your post, I didn't even read it entirely. So why do you feel offended? If someone needs to feel offended here it's RobJ not you. I wasn't answering you nor quoting you.

@RobJ,

RobJ I think we all agree that nothing is 100% sure when it comes to biology and medecine. But I have a question for you. Most people here are not guessing or gambling if they have ALS or not. They are not playing slot machines where they can win the jackpot or lose everything, they were all diagnosed with a benign condition by their neurologists. What do you tell those people? Your doctor is wrong no diagnosis can be made before 5 or 10 years? 14 months ago I started twitching got scared after googling, went to my neuro. He did a clinical, tested my Strenghts, my reflex took a look at my hands tongue etc and then told me you do not have ALS you have a benign condition, EMG not needed, go get a life and avoid internet. Let's say all this happened today and not 14 months ago what would you tell me? That my doctor is lying and his diagnosis useless?

Why instead of telling everybody that their doctors are wrong you do not do the opposite and try to reassure them? We all know exceptions exist in every disease and doctors can be wrong they are not gods after all, but let's admit that in the overwhelming majority of cases a medical diagnosis is true.