Diagnosed with MND: Journey

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I don't really get your analogy about good better and best so what are we staying now you have to wait 234 years to be absolutely certain depending on how good your Nero is The four-year comment you make it is absolutely contradictory to what is the document priorThanks
 
You also have to realize is that this isn't just a situation of people and weakness I think everyone understands that What many individuals including myself is the possibility that these fasciculations could be the start of one day it being a MND or something very nasty That's where the beer company for people that they can't seem to come to grips with the fact that it will not lead to something else one dayThanks
 
It's all about weakness. If you don't have weakness you don't have MND.The good neuro's see it 6 or 7 times in their career and will tell you after 12 months of twitching that you don't have it.....The better neuor's see it 30 or 40 times in their career and will tell you that after 2 years of twitching that you don't have it....The best neuor's (major cities, like Boston) see it 10 or 20 times in a year (in person, consult, assist others) and will tell you that after 4 years you don't have it but have the same probability as anyone else getting it.....but documented cases of twitching to weakness far exceed 4 years........Get off the idea you have it. You don't. If you don't have weakness you don't have it. Simple as that. It doesn't matter if you twitch, have cramps, have perceived weakness, think you are weak, pain, numb, buzzing, tingling, etc....or EMG is dirty....it just doesn't matter. If you can't turn your ignition in your car, can't pour a gallon of milk, can't hold that cup of coffee and you twitch or cramp, then be concerned.YOU NEED TO BE WEAK to be diagnosed. I was told by the best of the best, even if they found a gene that said "yup you have it", if you don't have weakness you won't be diagnosed, because they just don't know enough. They have to be 100%, 100% is weakness, even if you don't twitch.Got it?
 
Yes I understand what you saying in general as it's a dieases of weakness but I still find some of your comments confusing In general what we have historically said is after 8 to 12 months of twitching with no weakness you have the same probability of developing MND as the general population so why does it take after 4 years by the best Nero?What's the difference between a person who twitches for a year without weakness and a person who twitches for four years without a weakness? The probabilities are the same correct? If you have been cleared by a nero and after one year if you don't have weakness you don't have it and it will not develop into anything else correct? Thanks
 
Dear all,we may discuss the subject for years...as well as scientists which by the way constantly refine their findings, smotemies forgetting about good math however etc.but.the key issue is, on my point of view, not chances, years, terms, EMGs, prodormal signs etc.but our attitude.how would we live those 8 months, 1year or 4 years.live your life or wait that weakness would come?that is the question.each of us has its own answer I think.
 
Garym: You were lucky that in your case they acknowledged the BFS.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. So it really depends, even specialists might lack the experience due to rarity of this condition and hence their recommendations and follow-up plan might differ.
 
Can you expand on your comments regarding the calves So there are the hard rules such as 1 year of no weakness and clean emg despite cramps and twitches and your consider to have the same probability to get MND or something nasty as non twitchers etc? Anyone?
 
Look, there is even the sticky post of dr. Eisens and prof. Carvalho's responses - it is unlikely you could find a better specialist in this area. And they confirmed that usually 8 months is enough and that often if there are fasciculations preceding weakness in ALS, there are upper motor neuron signs - and that is exactly Ian's case. So obviously they are right and you can trust their opinion.
 
but this in this case, there where bad signs at the first emg!, chronically denervation, in a lot of muscles (Raindog wrote this)...and other clinical signs. A positive Babinski for example. I think and I also hope that this is the main difference to bfs or bfcs. I have visited 3 musculare specialists in Emilyomousey. They all have not seen a case with only twitching and cramping without other clinical signs and a clean emg, who developed MND after a couple of months. I asked them after 7 months and they told me, that there was no case... Deutsche was told by one of the most famous als specialists in Emilyomousey (leader of als ambulance) that after 8 months twitching, extreme rarely after 12 months, and no other clinical signs, it is not als! And this doctor is really a als specialist, maybe the most famous specialist for als patients in Emilyomousey. For example, a positive babinski reflex is a clinical sign... in that case.
 
I have asked one of the neuromusculare specialists, what is about cases where patients develop als after 4 or 5 years twitching and cramping. He said, that he think, that those patients are part of the 70-80% of thenormal healthy population who twitch in a normal range... He said that these studies are normaly retrospective studies, the patients remember twitches and cramps. But at that time, for example four years ago, they have not visited a neuro and they normaly have not one emg. One of my neuros told me that signs of mnd are usually seen at the emg years before...not days and usually not months.
 
nwtwitcher: no opinions are needed, it matches what we have said and what the experts answered to our questions. I totally agree.As for the 70-80% of population twitching - I do not think so. As I mentioned. prof. Shaw, the ALS spec who diagnosed Ian, said she had never seen a patient with BFS elsewhere than in their calves. So I still believe that BFS is very rare (remember that the BFS study the ALS specialists were running had not been finished because of lack of patients).
 
JoshSon, 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).
 
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.
 
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.
 
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.
 
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 carvalioAre you discussing statistical outliers? Please provide some info Thanks
 
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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