Difference Between ALS and Fear

Bosley23

Well-known member
Many of us, if not all of us fear the former. We insist that the neurologists are wrong and that we are smarter than them, when that is not the case. For my sanity, and the sanity of others let me explain the difference based on research so many of us have gathered.ALS: .fatal neurodegenerative disease that usually causes a patients demise within 2-5 years .symptoms mainly include weakness and cramps, with occasional but usually not reported twitching .symptoms such as weakness, appear very early on in the disease because the disease is not a forgiving one. it doesnt hide. By early on, that means 2-3 months . twitching is almost never the first sign and if it is, the weakness sets in quickly. By quickly that generally means once again 2-3 months . horrible, quick, ugly pathology .First emg, usually within 3 months shows very severe abnormalites, and doctor tells patient something is severely wrong. Sends them to better specialist, clinic (Mayo) or what have you .Usually, if not always, patient knows he/she has the nasty by the 6 month mark even though diagnosis often does not take place til one year. .Doctors warn patients by 6 month mark that that diagnosis is most likely coming BFS: .not fatal, non-neurodegenerative SYNDROME .annoying as heck, but doesn't do any harm as can be seen on clinical and emg . twitches are generally random, with hotspots .lasts for years on end... possibly without ever going away .doesn't usually interfere with everyday activities, unless one lets it . scares the heck out of everyone experiencing it at first, but generally improves over times .people think that because twitching is a symptom of the nasty, that means they have it. When in fact, that is basically saying having a stomach ache is probably stomach cancer. .There are so many things about medicine we dont know including what causes twitching it could be anything. A virus, an injury, stress, a metabolic issue (i.e. gilberts syndrome or other liver issues. .We read, and by we this includes ME, rare freaky stories that we have no proof of being true on random websites that anyone could have written and insist this is reality . We choose to ignore the fact that the best clinic in the world, Mayo Clinic, did a study in which, well you know what happened. .We choose to ignore this study in favor of these small, who knows who performed them studies, on like 5 participants without a clear history .We choose to ignore that people from all around the world come to this clinic to be diagnosed with the nasty .symptoms wax and wane, unlike the nasty .people still have emg's after the lifespan of an ALS patient would have ended .emg's continue to be normal, or with little abnormalities not at all indicative of the nasty .Doctor always tells patient not to worry and "you dont have the nasty!!" .And last, but not least, we have symptoms that no patient of the nasty could ever have such as pins/needles, parasthesia, and tremors... Now you decide which one you think you have. I think i know which one i do, until the next symptom comes in that will freak me out. We all, including ME, need to get a grip on this and stop being idiots. I mean cmon the facts are right there, i didnt grab these out of thin air. Take care and I know which group all of you belong in.. :D)
 
I agree with Donald, quite a confusing post with a number of inaccuracies. The clinical examination presents with major abnormalities before an EMG is necessary. A clean clinical = no need for an emg.Mayo being the best clinic in the word? While you may have a personal opinion, there are other clinics regarded better for ALS dx.Regardless, there is no need to name clinics, all this results in are BFS'ers feeling the need to go to these clinics to get cleared. Any neurologist worth his medical degree knows how to dx ALS.First EMG usually within the first 3 months and the doctor tells the patient something is severely wrong? again, this is innaccurate, the patient may have a dirty emg, but there are any number of things that can cause a dirty emg, carpal tunnal being one, heck, even being in your senior years can cause a 'dirty' emg. ALS is always at the bottom of the list of dx's.The patient knows that he or she has the nasty by the 6 month mark? Im pretty sure 1000's of BFS'ers 'knew' they had the nasty at the 6 month mark too.60% of ALS patients present with weakness, the other 40% is made up of UMN signs like spacisity, and bulbar. A small portion twitch first. this is not unknown to us, and is the reason we are all here.The average ALS dx takes approx 15 months due to the fact that there needs to be signs in 3 limbs.
 
Quote "It typically takes longer to be diagnosed with PMA than ALS, an average of 20 months for PMA vs 15 months in ALS/MND."Quote "Because the process is one only of exclusion, it can take a year or more to get a confirmed diagnosis of ALS on average".Quote " It presently takes around 8 to 15 months for an ALS diagnosis."These were just a few quotes from various ALS info sites online :D)
 
Honestly, BFS In a Nutshell is all this site ever needed anyway. Anything that was posted or written after that will pretty much just back up what Alonzo summarized nearly a decade ago. I'm not sure why this site has people consistently and repeatedly trying to re-invent the wheel. Um, the wheel was already invented. You're not going to make it more round.Again, BFS In a Nutshell has all of this already, and it has been sitting here for years. It doesn't get updated. It is also the place that many doctors go to learn about BFS because Alonzo's sources and his research were so good. It has always baffled me why this site is anything other than personal stories, support forums, and a place to vent. All the research as to what BFS is and why it isn't anything to be worried about has already been done. No one is going to come up with anything revolutionary that hasn't already been documented.
 
sometimes I think people may need to put their thoughts in words because it helps them. Even if those thoughts have been previously captured. And I can see why people would think "hey, if writing this helps me, maybe it will help someone else - even if that is just one other person". We are all - or have been at one point in time - in various degrees of fear, concern, or whatever and it is important to remember that some people (present company included) are still on that journey to being 100% comfortable with this new part of our lives. I know it can be easy to get frustrated with one another...I really do. But maybe we should practice what Ellen DeGeneres says "be kind to one another".
 
I can think of no better way to be kind than to tell BFS people "stop banging your head against the wall. You are just going to hurt your head."
 
okay okay kids....no fighting...were all here to help each other thats what this site is all about...and leanne u are right about the timeline.. :) ..what i was trying to say was, but i think i said it wrong was that by 15 months there would be some serious issues...including atrophy, weakness possibly twitching but not always and deranged emg....didnt mean to offend anyone... :D)
 
ALS vs. BFS (the short answer) - both conditions have fascics as a sx.......that's it, no more similarities (no, perceived weakness doesn't count. :) ) Any other questions?????Take care,Gary
 

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