Accepting BFS Diagnosis

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BartOne

Well-known member
Hi all,Question: When did you accept it was BFS and not **S? After how many time since the twitching, buzzing,...started? When was your fear for **S dropping? Bart
 
Bart, I wish I could tell you. Anyway, you don't have it. Accept my previous advice to you: calm down and enjoy in Belgium's delicious chocolate. Do not pay attention to your body too much.
 
I am tempted to say - when I found something else to worry about.I am worrying more about brain tumour at the moment.I am fairly confident now though that a good EMG rules out *LS and I had stopped worrying for a good while.
 
I never really worried about ALS but MS. Of course I did not go on an Internet hunt like most. Not because I did not want to.... I just never made the connection between twitching and ALS since ALS is weakness in about 100% of cases. Seeing how rare ALS is to begin with it is even more rare to have twitching, buzzing etc as an initial sxs of ALS. I believe it is about 6% of ALS cases that begin this way. So the statistics are on my side plus my relative young age.In short it is about 1:100,000 people diagnosed with ALS per year in the US, then only 6% of those cases present with fasiculations as the initial symptom. Now these are true fasiculations!So.....in the USA there are about 300,000,000 people. Then there will be about 3,000 ALS cases per year. Then of those 3000 cases per year only 180 people that present themselves to a neurologist with fasiculations as the initial symptoms will go on to develop ALS. Then take into account study after study plus the 32-year long Mayo Study that noted that after following BFS/BCFS patients for 32 years after diagnosis 0 (ZERO) went on to develop ALS. These included EMG, MRIs and other exams like VGKC antibody testing. Many of these patients probably had much less testing over those 32 years than you have in you 6 months. Stay positive and you will realize that time and the numbers are on your side. Even though you hate them the sensory symptoms are a plus if ALS is your worry!As to your question of when I accepted it is not ALS. I never worried about it because sadly enough I realized some time ago that I am headed for the same place everyone else before me has gone to. On my twisted way of seeing things I am glad I will probably be dead in 30-40 years of old age because I am afraid of what we have to live with in this polluted planet we have made. I am more sorry what my kids will have to live with. Sorry but its my truth and you are more than welcome to say I am crazy about this last paragraph and I would not hold it against you. All I have to do is read the federal reports on threats to the US. On top of the list is pollution while ALS is very, very, very, very, very far down on the list!
 
I think this is a process----after so long of twitching, buzzing, worrying etc., and you discovered that you are still walking, talking, breathing, etc., the fear kinda begins diminishing. About the time you get over one level of fear, another pops up until you exhaust them all. Some of the veterans here have been the whole way. Some of us are only part way through the journey. I do know this though, the more I can focus my mind on something else, the less I notice my symptoms and the less I am aware of the symptoms, the more the anxiety retreats, etc., etc., etc., Its the original cycle in reverse. So, do just what Slaven Balen said, get you some good Belgium chocolate, go for a walk, call up a friend, find a good movie, whatever turns your crank and let your mind find a new resting place. :p Good luck,Cindy
 
I think its a matter of time, took me a few months of clinicals and getting my tests done to accept the BFS diag. The only thing that drives me nuts now is the new spots, new sensations thing, the seem to either move around or pop up anew weekly. However, perhaps as my coping skills get better, they tend to bother me less and less. My advice, is too limit computer time period and to get active, this has been #1 in helping me through this!! Weird sensations aside, if I can go to the gym for an hour, lift weights, and exercise, I know I dont have anything sinister!!Good luck,B
 

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