Diagnosed with BENIGN MND

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Re: Diagnosed with BENIGN MND

Postby J4son on July 9th, 2014, 2:13 am

RobJ wrote:Good neuro's will tell you, you are clean after 8 months to 1 year - NO WEAKNESS
Better neuro's will tell you, you are clean after 2 years - NO WEAKNESS
The best neuro's wait about 4 years,


Waw, what a Manichean way of seeing things. The good the better and the best neuros… :) The good, the bad and the ugly, even in that movie they ended up being all crooks :)

As twitchydoc mentioned Dr. Eisen who’s surely one of the world best MND specialist said that 8 months into twitching without weakness, reflex changes, electrical changes or atrophy is not ALS. Of course Dr. Eisen was talking about twitching, was he also including extreme severe cramps like Ian was experiencing? I don’t know…

Nevertheless, it is important to stick to what is commonly admitted by the medical community. Reading stories on internet, or someone giving his own opinion about some cases gathered here and there does not help. Even in Ian’s story there are holes. Here in his first post he said something different about the onset of his symptoms compared to what he said elsewhere. So it’s better to stick to what doctors say rather than trying to interpret some stories from the Internet.

TwitchyDoc wrote:
I was curious so I asked prof. Pamela Shaw, the ALS spec who diagnosed our Ian - she said she had never seen a case with generalized fasciculations, only patients with their calves affected or patients with neuromyotonia.



Yes, but what do we really mean by generalized fasciculation…

- Some people have visible twitches all over the body 24/7
- Some people have one twitch here and there occasionally that no one can see not even doctors…
- Some people are somewhere in between…

Are all these the same? Why BFS was way more common in the medical community prior to the internet era?… Does it mean that twitching is caught by the fact of doing medical studies? Why it was much more common to see twitching in doctors, nurses, med students rather than in lawyers, businessmen or astronauts? Probably because everybody twitches, but in most people it remains under the threshold of awareness… Med studies, med encyclopedia, Dr. Google makes people aware of these twitching and for people with some health anxiety it’s the begining of a terrible downward spiral into terror…
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Re: Diagnosed with BENIGN MND

Postby TwitchyDoc on July 9th, 2014, 2:19 am

J4son, generalized fasciculations by definition are fasciculations appearing in multiple limbs during the exam so they are considered generalized. While definitely you can be more aware of a common phenomenon, it still is very mild (the founder of "BFS" - Brown, described medical students who complained of a thumb fasciculation occuring a few times a day etc. - it was nothing when compared to our cases).
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Re: Diagnosed with BENIGN MND

Postby garym on July 9th, 2014, 9:45 am

TwitchyDoc wrote:Garym: You were lucky that in your case they acknowledged the BFS.


Actually the Docs at Baylor/ALS clinic didn't dx BFS. They told me my condition was benign even though they found a few fibs along with the fascics and decreased recruitment in both of my triceps. Antibody test came back negative. Dr. Harati said he sees patients on a regular basis that have fibs and other abnormalities on emg that end up having benign conditions. That's the thing about the human body, they are not all created equal and they all have their own set of idiosyncrasies. Those of us on the site want everything to be clear cut, but in the real world it just isn't.

Being a teaching institute, every time I went in to Baylor, the docs would bring younger docs in to see how someone with my sxs could be benign. They would discuss my emg findings, observe my fascics, talk about my cramping, and basically treat me like a guinea pig, and at the end he would always say something like, "so remember this can be benign". It's maddening to me that lay people come on this forum and speak in absolutes, like they know more than trained professionals, just because they've read something in a journal....the truth of the matter is not even the professionals understand what is happening, but based on their experience/training they can come to an educated guess as to what process is at hand and if it is benign or not. Otherwise they take a wait and see approach....so if you have been given a benign dx by a trained neuro, you can rest assured that everything is fine.


in case anyone is interested:

https://www.bcm.edu/healthcare/find-a-p ... cfm?id=206

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Re: Diagnosed with BENIGN MND

Postby TwitchyDoc on July 9th, 2014, 9:53 am

Thanks Gary, I agree with that - too bad not all specialists are like that.
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Re: Diagnosed with BENIGN MND

Postby nrwtwitcher on July 9th, 2014, 10:32 am

Thank you Gary. One of the neuros I have visited (neuromusculare specialist) told me that people with bfcs sometimes develop mild chronical musculare changes over the years, measurable by emg or muscle biopsy. He told me that this means nothing bad, that do not means NMD! This people do not develop NMD! It ist just a a benign condition. I have learned from the neuros and from the knowledge of the people from this board that the clinical exam is the most important.
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Re: Diagnosed with BENIGN MND

Postby ShawnW on July 9th, 2014, 12:33 pm

I now remember why I stopped coming here. I hadn't had any real twitching in over a month...after reading this thread I am twitching like a mofo.
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Re: Diagnosed with BENIGN MND

Postby RobJ on July 9th, 2014, 9:24 pm

the best neuros won't give u a diagnosis of bfs...they may tell u that. they will document as "chronic fasciculations". search FASCICULATIONS 4 YEARS read results. lots of cases were fascics preceeded weakness after 4 years.

dont patronize the crowd. u lose credibility. best is to read up and gain knowledge for urself.
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Re: Diagnosed with BENIGN MND

Postby garym on July 9th, 2014, 10:14 pm

RobJ wrote:the best neuros won't give u a diagnosis of bfs...they may tell u that. they will document as "chronic fasciculations". search FASCICULATIONS 4 YEARS read results. lots of cases were fascics preceeded weakness after 4 years.

dont patronize the crowd. u lose credibility. best is to read up and gain knowledge for urself.


False....bfs is a common dx by the best neuros....Harati specifically discussed bfs with me, but since I had other issues didn't give me the dx. I have also been told by some of the top neuros that there is no evidence that people with bfs have any greater chance to develop als than the general public. Provide some real, medical journal published evidence to support your claims, or you lose credibility and I'm not talking about google searches and posts on internet boards. And from where I'm at, no one is patronizing the crowd, just questioning the claims you are making.
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Re: Diagnosed with BENIGN MND

Postby veryworried123 on July 9th, 2014, 10:29 pm

Robj can you please provide data and notes proving your claim and disproving the 8 month / rule which is generally accepted and discussed as per Einstein and carvalio

Are you discussing statistical outliers?

Please provide some info

Thanks
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Re: Diagnosed with BENIGN MND

Postby christo on July 10th, 2014, 1:27 am

I am reading this thread for some days, and I found all of this ridiculous.
First, Ian came here but never pretended to have BFS. The first and only topic he created has the words "diagnosed" and "mnd" in the title. I syrongly believe we can assume the word benign was linked to denial of the disease, which given the situation is totally understanble.

Who here have an mnd diagnostic from a neuro ?

Then, robj please, can you stop putting oil on fire ? I googled your keywords, and... nothing. Just the same old studies, only two, and really nothing new.

So on one side we have a 20+ years twitcher saying we need to wait 4 years to start thinking that maybe we are not dying from als, and on the other side we have dr Eisen, world best als specialist saying 8 months is OK.
Choose who you want to believe.

Finally, as stated before by others, this is not the place to discuss here. This thread should be put to rest, in respect for Ian.
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Re: Diagnosed with BENIGN MND

Postby J4son on July 10th, 2014, 5:34 am

veryworried123 wrote:Robj can you please provide data and notes proving your claim and disproving the 8 month / rule which is generally accepted and discussed as per Einstein and carvalio



Eisen not Einstein. Although I’m sure Dr. Eisen with his great experience in neurology and MND must be considered as a kind of Einstein in his field.

ShawnW wrote:I now remember why I stopped coming here. I hadn't had any real twitching in over a month...after reading this thread I am twitching like a mofo.


Very true shawn. And while I think that a board like this one is very important in the beginning because it helps to take some perspective and distance on the issue, to meet some veterans and take reassurance from them which is crucial during the first months, yet on the long term it becomes counterproductive. After 8, 10 or 12 months we usually know everything regarding twitching, MND, BFS, ALS etc. so keeping hooked on internet even on great board like this one becomes like turning in circles and ruminating over and over the same things, the same symptoms, the same stories.

I experienced that not only with twitching. When I was freaked out by a very strong tinnitus, the tinnitus board helped me a lot in the beginning. Later it was clearly counterproductive. When I was away from the board my tinnitus used to be driven to the background and barely heard. But each time I visited the tinnitus board, the ringing was roaring again full force in my ears.

Here it’s the same. When I am away from internet I can forget about the twitching for days. But the moment I come back to the board, I turn back into a pop-corn twitching machine :-)

RobJ wrote:the best neuros won't give u a diagnosis of bfs...they may tell u that. they will document as "chronic fasciculations". search FASCICULATIONS 4 YEARS read results. lots of cases were fascics preceeded weakness after 4 years.

dont patronize the crowd. u lose credibility. best is to read up and gain knowledge for urself.


Well at least now we have a good way to know if we’re dealing with a good neuro or not. Next time even if I have a neurological problem unrelated to twitches, I’ll ask the neuro that question: Dear Doc. How long to we need to monitor twitching before being on the clear side regarding MND?

- If he says 8 months I’ll know he’s a crap (Poor Dr. Eisen viewed as one of the best MND experts and who said 8 months of twitching without progression means no ALS).
- If he says 2 years he’ll be average.
- If he says 4 years I’ll consider him like an expert.
- And if he says one century he’ll be for sure the God-Like of neurologist, the Zeus of the neuron, the Jupiter of the grey and white matter :)

Now that I think about it, my neuro must be really really bad…At my first visit after 3 weeks of twitching he did a few clinical and reflex tests and told me: you don’t have ALS.

Sorry RobJ I prefer to live in lalaland, neverland and in complete denial by believing what Dr. Andrew Eisen said, what the mayo clinic said about a single EMG, and what most people here have reported from their neurologists rather than to face the cruel truth and believe you.

christo wrote: The first and only topic he created has the words "diagnosed" and "mnd" in the title. I syrongly believe we can assume the word benign was linked to denial of the disease, which given the situation is totally understanble.



No Christo it was not linked to denial. “Benign-MND" is a true diagnosis that was made by some neuros in some extremely rare cases. There are links about it on internet I think.
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Re: Diagnosed with BENIGN MND

Postby garym on July 10th, 2014, 6:12 am

christo wrote:Finally, as stated before by others, this is not the place to discuss here. This thread should be put to rest, in respect for Ian.


I agree and feel bad for contributing to the craziness over the past couple of days....just couldn't sit back and not comment.
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Re: Diagnosed with BENIGN MND

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