Down that road again

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Re: Down that road again

Postby crotwich on December 15th, 2014, 11:30 am

Little Lost, I couldn't agree more. :D I would also like to add two remarks:
1. Most of these unfortunate people were older than 50 years.
2. Three highly respected neuromusclar specialists (who are also university professors) told me that from their experience, if you had a clean clinical exam as well as a clean EMG preformed 2-3 months after the onset of fasciculations, the probability of developing MND is the same as for general population. Just to say that one of these specialists has more than 40 years of clinical experience.
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Re: Down that road again

Postby TwitchyDoc on December 15th, 2014, 12:57 pm

Little Lost, just to address some of your points:

1) Upper motor neuron signs - no, these patients had clear clinical exam, meaning there was no pathology in either upper or lower motor neuron signs.
2) de Carvalho is right that many patients exhibit at least some upper motor neuron signs, like brisk reflexes, but it is not a rule. As you know, ALS may stay LMN or UMN predominant for quite a long time. Sometimes the UMN involvement is only confirmed by autopsy.
3) EMG are certainly more sensitive today with better filters. However, they detect positive sharp waves and fibrillations as well as 30 years ago because it does not require any special filtering. Quite the contrary, back then EMG might have yielded more dirty results because of the imperfect filtering.
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Re: Down that road again

Postby bobajojo on December 15th, 2014, 2:03 pm

Docen,

I don't think I'll ever understand why you seem to have a different interpretation of these studies than the rest of us and how your interpretations always scare the holy begeezus out of the newbies on here.

The conclusion of the Mayo Clinic Study:
"The syndrome of benign fasciculation, often associated with muscle cramps, appears to be a distinct entity. The historical data suggest that it is multifactorial in origin. The important conclusion is that if the physical examination is normal and the EMG studies are normal or do not suggest motor neuron disease, the patient can be reassured of a completely benign prognosis."

The Mayo Clinic's response to Dr. Eisen's "Not so benign (6.7%)" Study:
"The comments by Drs. Eisen and Stewart are very appropriate and do match our experience. There is no doubt that in retrospect many patients observe fasciculation as their first symptom of ALS. As implied by Dr. Eisen, it is very rare for patients to present at this stage. They tend to present when weakness or incoordination has developed. It is our experience, however, that patients who have fasciculation alone as the first symptom of ALS always have EMG abnormalities when they present with fasciculation. This does provide the opportunity to stress again that the subjects in this study (the Mayo Study of 121 patients) had both a normal complete neurological examination and normal EMG (with the exception of fasciculations), performed by experienced observers. When these criteria are met, we believe that one can strongly reassure the patient."

Dr. Eisen himself:
"In any event from 40 plus years of clinical experience it is extraordinarily rare for ALS to truly present with fasciculations and in my opinion if after 8 months there are no other clinical features then it is not ALS. I do hope this reassures."

I'm not sure why you continue to fight these statements Docen. I truly wish that some day you will come over to the bright side of things :) .

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Re: Down that road again

Postby misterjuanperalta on December 15th, 2014, 2:45 pm

Thanks Matt! Add to this the comment by Mayo's Dr. Rubin, "It's unknown if those who wound up with ALS would have gotten it anyway without BFS." I think you posted something similar prior.
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Re: Down that road again

Postby TwitchyDoc on December 15th, 2014, 3:11 pm

Matt, you have not read te whole thread, have you? I did not bring up these studies and I am tired of being accussed of that.

Dr.Eisen found 6,7% of patients with isolated fasciculations and some with clean EMGs who all developed to ALS. In his subsequent study, the number was even higher - 14%. None has any neurological deficits, these developed within 7-18 months..

I provided the reference to the books and the original studies so why do you not read it, if you think I misinterpret...

Please check first sho starts these discussions. There was a thread today created about on of these studies..why dont you go there...
Last edited by TwitchyDoc on December 15th, 2014, 3:14 pm, edited 1 time in total.
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Re: Down that road again

Postby J4son on December 15th, 2014, 3:14 pm

In my humble opinion when we want to relay on a scientific study we do it on the whole study and not fragments of it. We can’t take one scary thing from the study and ignore the others. If Dr. Eisen’s study is correct, the study as a whole is correct and not a part of it, and that makes me think of the following points:

1) Both studies the 14% and the 6.7% involved people with CFS not BFS. And here we are not talking about calves cramps, but cramps in very unusual places strong enough to become a major concern of its own.

2) Both studies found that the median time between twitching and other deficits was around 7 months with something around a year as a maximum. So it’s misleading to say the study found that 6.7% or 14% of ALS patients starts with twitching, because that's incomplete. What those two studies really said is: 6.7 % or 14% of ALS patients had twitching AND cramps, and in 100% of them other deficits appeared within one year of the onset of twitching. These studies are not like a restaurant menu where we can chose à la carte the points that back our opinion and ignore the rest.

3) I can be mistaken but it seems the 6.7% study had a larger panel of patients and came after the 14% study.

4) There is an Israeli study from the seventies mentioned somewhere on this board with even more patients than in Eisen’s studies. It found only 3% of ALS patients starting with only twitches.

5) Carvalho is his email to Helen said he doesn’t remember being mistaken in a diagnosis between benign twitching and ALS twitching, and I don’t think he waited 10 years for each patient before giving a diagnosis. So unless Carvalho is a better doctor than Eisen, there must be an easy way for a specialist to tell the difference.

6) None of the 121 BFS patients of the mayo clinic studdy developed ALS, which means the odds of developing ALS after a BFS diagnosis are AT LEAST less than 1/121

Conclusion: Nothing new under the sun.
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Re: Down that road again

Postby TwitchyDoc on December 15th, 2014, 3:17 pm

J4son, exactly - these are facts some people here just do not want to understand.

I am interested if you will be accussed of scaring people with BFCS now...If I said that, I would be attacked already :) Not all of them had cramps, but many. So did those in Walton study.
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Re: Down that road again

Postby Bibi on December 15th, 2014, 3:40 pm

Ok , that is why anxious People like me should run away from this board.
55 year , fascics since april , some cramps in The beginning ,A lot of cramps in legs now , dry mouth .
Clean EMG at 5 month and clean clinical at 7 month.
I dont feel safe att All , in fact i feel something horrible is going on .
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Re: Down that road again

Postby bobajojo on December 15th, 2014, 4:10 pm

For what its worth. I have been diagnosed with CFS but you haven't scared me a bit so don't worry. I'll listen to my own neuro instead.
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Re: Down that road again

Postby J4son on December 15th, 2014, 4:57 pm

Bibi wrote:Ok , that is why anxious People like me should run away from this board.
55 year , fascics since april , some cramps in The beginning ,A lot of cramps in legs now , dry mouth .
Clean EMG at 5 month and clean clinical at 7 month.
I dont feel safe att All , in fact i feel something horrible is going on .


Bibi,

Everybody has leg cramps. All my life I had calves or foot cramps at the rate of 3 or 4 per year. in the recent years it calmed down, and since the onset of my twitching I had one calf cramp only. One of the symptoms of BFS is cramp. However in CFS the cramps are a main and dominant symptom, and it's not just in the legs. I know a girl who cramps in a chronic way (without twitching) it's mainly shoulder cramps, extremely painful on a daily basis for months, and she was seeking medical help for that. If your doc told you you're fine it means you're fine. It's not a bet or a Russian roulette here. The problem with health anxiety is that people pick up a symptoms like cramps, without really knowing what CFS cramps are and what ALS cramps are. I see some very reassuring points in Eisen's studies, and it's the fact that both studies confirmed that one year was more than enough for other symptoms to appear. 7 months being the median time. Eisen himself said in his email to Helen that 8 months were enough. So taking the 6.7% study and still worrying after several years because of that same study is ridiculous since this is not what the study said.
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Re: Down that road again

Postby Little Lost on December 15th, 2014, 5:41 pm

Jason I liked your previous point , the restaurant analogy, about picking choice points from the menu. You are right cherry picking of science articles I.e.pseudoscience is stupid, you may as well say the story of Snow white and the Seven Dwarves is an academic study of cyanide concentrations in red vs green apples.

Unfortunately the bias dissection of articles doesn't just come from the reader, but sometimex also from the authors. I don't include Eisen, but some articles brought here are not worth wasting worry time on. They have omittied important controls and are sensationalising over extrapolated statements so far removed from the raw data they are actually presenting. These studies started life with delusions ôf publication at the high impact journals, but due to their poor scientific content are finally published in some obscure journal who's review processes are less stringent.

People bring such studies here, believing them as gospel, when in reality they are reading nothing more than the lowest tabloid equivalent of the science world. ( again I don't mean Eison, but there have been many others brought to this forum).

Bibi don't you fret. We can talk ourselves into or out of anything, Remember as chicken-licken was going one day to the wood, whack! an acorn fell from a tree on to his head. "Gracious goodness me!" said Chicken-licken, "the sky must have fallen; I must go. and tell the King.". Bit like this forum can get at times.

Hx
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Re: Down that road again

Postby bobajojo on December 15th, 2014, 7:30 pm

Its this "prove to me I don't have ALS" attitude that will keep a person here for 7 years, or even 20+ in some cases.

I haven't been on this site in a while, and now I remember why. I hope the newer twitchers like Bibi realize that this condition really is benign, even though some people on this forum refuse to believe it. Best of luck to you all.
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Re: Down that road again

Postby Ghayes420 on December 15th, 2014, 7:53 pm

You don't need studies to be posted here when you have the *beep* neurologist saying it himself. Did you read above? I would take a doctor with 30+ years of MND experience over any, I MEAN ANY, study you throw out there.

You want to see the study? It's called:

aboutbfs.com

1000's of twitching cases. How many did we have progress to ALS when there clinical and EMG was clear and they were being seen with only twitching as the complaint? Zero.

That's a good enough study for me.
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Re: Down that road again

Postby Ghayes420 on December 15th, 2014, 8:09 pm

dude, look them up yourself. Aboutbfs.com is not a catalog service for PubMed articles. My guess is you have a PC. Look them up like we all have. I know you have already.
These articles in general serve no good for this group of nervous twitchers because everyone has their 'cognitive filter' raised so it would be difficult if not impossible to digest subjectively regardless.
Jason and LittleLost and Bobojojo above do a good job at summarizing them for the group. (Thank you fellas for taking the time to do that btw)
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Re: Down that road again

Postby crotwich on December 15th, 2014, 8:26 pm

RobJ, how many people do you know (or just heard about) who were initally diagnosed with BFS (by an expreinced neuro) and who eventually developed MND?
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Re: Down that road again

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