How you can beat BFS - by a 10+ year veteran

This forum is for posting your personal experiences with BFS: symptoms, doctor visits, fears, etc.

Please use this forum to post give and recieve encoragement and reassurance from sharing the trials and triumphs you have faced.

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Re: How you can beat BFS - by a 3+ year veteran

Postby MarioMangler on August 4th, 2012, 2:41 pm

Awesome, I'm just glad I can still help some people. I know full well how much it means to have an old timer tell you "You are going to be fine" at the start of your journey. I hope people continue to read this post and will continue to be helped by it. It's the least I can do since aboutbfs.com did so much for me.
BFS FAQ:
1. No, that's not bulbar
2. No, the location doesn't matter
3. Yes, we have all had that symptom
4. No, you're not the exception
5. No, that's not ominous
6. No, you don't need an EMG
7. Yes, you will be fine
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Re: How you can beat BFS - by a 3+ year veteran

Postby wjjw on August 4th, 2012, 3:01 pm

pdodge715 wrote:I am about 6 weeks in with a normal EMG at the 3 week mark, but a less-than-sympathetic neurologist who has left me with some residual fear (explained in more detail in my most recent post).

Patrick, not only was he less-than-sympathetic but he apparently had his head up his ass. I just read that post. At your young age, I would bet your neurologist my over priced house in NJ any day that your twitches are nothing serious. Please disregard his stupid comments.

Cheers,
Bill
A knowledge of the existence of something we cannot penetrate, of the manifestations of the profoundest reason and the most radiant beauty, which are only accessible to our reason in their most elementary forms--Albert Einstein
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Re: How you can beat BFS - by a 3+ year veteran

Postby Kamila on November 3rd, 2012, 10:04 am

Hello!
Mario after read Your post i felt calm. Also neurologist makes me calm. He make really long checking- even check all fingers. He said till now is no really serious weakness of muscles. So its hope its BFS not ALS. But he said dont know what it will after few month.So also about EMG he said to wait some time because its can be too early to show damages. For sure it will show changes because i have fasciculations in all body 24 hours.But for see damages its can be too early.
I have fasciculations more than 1 month.
But now i start worry again. This is reasons:
1. I have clonus:especially in left hand and left leg ankle. Neurologist also said its clonus. And 3 days ago i was read on net than in BFS clonus sholud not appear. But clonus is common simptom of ALS.
2.When i move or massage muscle where i have fasciculations-its not stop. Example my fasciculations in foot. When i make circles with foot massage muscle which fasciculate its not stop.
But more i woory about clonuses.
I will aprreciate for any answer from Mark or other person. I wish You all good health.
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Re: How you can beat BFS - by a 3+ year veteran

Postby Yuliasir on November 3rd, 2012, 11:30 am

Hi Kamila,
not sure about what you mean as clonus, but my condition for example is diagnosed as benign myoclonia which means that my muscles often make repeated discharges after strain or tapping on them. So it is possible to have myoclonus which is benign.
We also could have hotspots wich do not go away with massage. Even my regular twiches never went away with massage.

And I am not sure that ALS could be presented at the same time in leg and hand. Usually it eats one limb, then goes to other - quickly but not simultaneously.
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Re: How you can beat BFS - by a 3+ year veteran

Postby Kamila on November 4th, 2012, 9:54 am

Hello Julia!
I am appreciate for answer. About my clonus is hard for me to explain in english how its looks but neurologist said for sure its clonus.Its looks like this http://www.youtube.com/watch?v=8GC8F2UMYbQ -example in sit possition when put food on fingers-all leg start shakeing. Or when neurologist put 2 of my fingers together (example thumb and ring finger) and he try with his finger -open this two, my finger was shaeking in clonus again.Soory my english is not good.
And makes me scared that i read in BFS clonus not appear. I dont know how about myclonus- but You said its part of BFS.I thought in BFS appear only fasciculations. So maybe i am wrong? I hope it.
About muscle which not stop after massage i also hope then that its just hot spot.
Now want ask about this sentence "And I am not sure that ALS could be presented at the same time in leg and hand. Usually it eats one limb, then goes to other - quickly but not simultaneously"
Because in my story: it was start in left leg, then after maybe 5 days its goes also to right leg, and then affter some time its goes to hands and all body.So its not start simultaeously in all body. Just now its simultaneously. So in ALS when it already eat one limb and go to other will its stop fasciculate in this first limb?
Soory if my message not clear- just language problem.
Again thanks and and wish You good day and health.
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Re: How you can beat BFS - by a 3+ year veteran

Postby SuziQ on November 4th, 2012, 10:00 am

Kamila wrote:Hello Julia!
I am appreciate for answer. About my clonus is hard for me to explain in english how its looks but neurologist said for sure its clonus.Its looks like this http://www.youtube.com/watch?v=8GC8F2UMYbQ -example in sit possition when put food on fingers-all leg start shakeing. Or when neurologist put 2 of my fingers together (example thumb and ring finger) and he try with his finger -open this two, my finger was shaeking in clonus again.Soory my english is not good.
And makes me scared that i read in BFS clonus not appear. I dont know how about myclonus- but You said its part of BFS.I thought in BFS appear only fasciculations. So maybe i am wrong? I hope it.
About muscle which not stop after massage i also hope then that its just hot spot.
Now want ask about this sentence "And I am not sure that ALS could be presented at the same time in leg and hand. Usually it eats one limb, then goes to other - quickly but not simultaneously"
Because in my story: it was start in left leg, then after maybe 5 days its goes also to right leg, and then affter some time its goes to hands and all body.So its not start simultaeously in all body. Just now its simultaneously. So in ALS when it already eat one limb and go to other will its stop fasciculate in this first limb?
Soory if my message not clear- just language problem.
Again thanks and and wish You good day and health.


I had clonus and brisk reflexes with my BFS, but I'm trying to understand what you wrote. When you put food in your fingers, your LEG shakes? I'm sure you didn't mean that and it is just a language barrier, but please try that again. :) It sounds also like you have tremors, which can certainly occur with BFS. Do you have any clinical weakness? Have you had an EMG? What does your neuro think is going on?

Blessings,
Sue
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Re: How you can beat BFS - by a 3+ year veteran

Postby Yuliasir on November 4th, 2012, 10:21 am

Hi, supposing that you meant foot, not food - I can tell you that I have that type of shaking FOR YEARS. if i put my feet on the tiptoes even sitting, my legs become shaking crazy - not every time, but quite often, especially when i am tired or nervous. I have that type of muscle reaction since I remember myself - and I am 42 now :))) That type of clonis does not hirts definitely. As for fingers, I have that type of reaction too, but only after BFS onset and very very seldom (in fact only twice and each time i was SOOOO nervous so I consider that as a good proven sign of hyperexcitation).

In BFS every symptom exists, except clinical weakness ;)
as for BFS, it is well known for spreading quickly and occuring bodywide (in all the body simultaneously with hotspots). ALS spreads from one limb to another but nobody, as far as I know, could have paralysis symptomes at the same time in right leg, left arm and somwhere in a neck... it has a patterns, while BFS is sporadic, you could have today left leg twitching, tomorrow right hand and then left leg again, then abdoment, then again quads, tongue etc. No progression pattern, just a circus. Moreover, damage caused by B\ALS is irreversible, i.e., since the fingers are paralysed, they never come back to life. In BFS noone of symptomes causes irreversible damage.
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Re: How you can beat BFS - by a 3+ year veteran

Postby Kamila on November 7th, 2012, 9:57 am

Hi Sue!
Thanks for answer. Yes lol I didn't meant food but foot- like Julia said.
About tremors i don't have. I have clonus.My hands not shakeing in tremors.Neuro called is as clonus.He said we will wait some time before make EMG because now its can be too early to show serious damages. He said for sure EMG now will show some changes (because of fasciculations) he saw it even when i was on visit because my fascicuatlions ate 24 hours.
About wekaness- he said till now is not really clinical weakness. I felt some loose of fellings in left leg but not so much.
Have nice day!
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Re: How you can beat BFS - by a 3+ year veteran

Postby Kamila on November 7th, 2012, 10:15 am

Hi Yuliasir!
Thanks for answer again. Its meakes me more calm when i read You also have this clonus in legs when sitting. I have it always. Also in hands fingers. But now i am more calm than its can appear in BFS too. Just in my cases even in legs is everytime- stress not make it worst.
About paralyses i dont have clinical weakness till now. I had some loose of feelings like i told in post to Sue-in left leg. But it was even more on begining, now i dont fell it so much. Neuro said anyway sometimes its can come later. Sometimes in ALS first come fasciculations then weakness because its need time to real damage.So i just wait to make EMG.
About fasciculations i dont know if it was not progression pattern. Because its start only in left leg then after few days in right leg then after few days in hands and now its everywhere-like simulatnsionely. With this bad hotspot in foots which never stop fasciculate.Soory for my bad english again.
Wish You have nice day. Hope one day Your BFS will gone like in Mario story-its stops for some time.
Regards!
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Re: How you can beat BFS - by a 3+ year veteran

Postby Kamila on November 8th, 2012, 12:52 pm

Its again me
Omg i am scared!!!!
I had visit today to neurosurgeon (i goes there mostly about my backbone case).
By the way i told him about fasciculations and all.
He make some checking (neurololgical) and.... he said I have PARESIS weekness in my legs.
I thought WTF- few days ago when i visited neurologist he said i dont have clinical weekness and now neurosurgeon said something totally different.
He make paper to direction me to hospital.(By the way in my great country time to wait for place it will around one year).
When i left his room i was crying.
Then i back to home and stat thinking. And i was think why he said i have paresis- he said it after one exercise. I start thinking "*beep* it, i dont think so for anybody is easy to make it. And i reember even in yoga where i was few years ago was some exercise like this and its hard."
Then i told to my parents at home to try do it. And wow my mom could not make it even a little. Even i make it more- and he said i have paresis.
Now- how this exercise looks? I was lay on my back and he said me to raise up both of my legs in one moment. Not first right leg then left. But both together.And I could not raise them up so much just little, not too much hight. But yes of course i can raise my left or right leg. So how its can be paresis atony weekness?!
I know example in dislordosis in backbone (whcih i have) its hard to raise up one leg -very hight. I ask now my friend can she raise up both legs in one time really hight to air (in direction to ceiling) and she also could not.
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Re: How you can beat BFS - by a 3+ year veteran

Postby Kamila on November 9th, 2012, 12:20 pm

Did anybody have idea if this checking make sense? Really who not have problem when laying on bed to raise up both legs hight? (without bending kness-just in straight position). From yesterday i asked many friends and they also have problem.So how based on this neurosurgeon told me i have paresis atony in legs and clinical weekness? I can normaly raise up left or right leg but not both together- i mean i can but not very hight. Why he makes me so scared?
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Re: How you can beat BFS - by a 3+ year veteran

Postby Yuliasir on November 9th, 2012, 12:29 pm

kamila,
not being a neuro, I can only suggest to send PM to our fellow TwitchyDoc (as far as I know he is studying medicine professionally) or to SuzyQ (she is a registered nurse). I remember that there is a test with raising legs, but can not remember which exactly and what is a sign (I rather remember that the issue is wheter a person can raise ONE leg independently of another or something like that). For me raising both legs from laying on the back position is rather a matter of abdominal muscles, not lower limbs ;)
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Re: How you can beat BFS - by a 3+ year veteran

Postby Kamila on November 13th, 2012, 1:51 pm

Hi Yuliasir!
I am very thankfull for answer!
I answer late because i was in nervous that even not open net heh. I also think that problem is when person can not raise one leg and riase 2 legs can be hard. Also one of my friend said to this must have strong muscle of abdominal- like You said.
I thought wait for time to EMG and visit neurologist which i saw first before saw neurosurgeon, but today i got call from neuro Hospital they told wait for me. Strange because this neurosurgeon said free place will be around after 1 year. But anyway i am happy because they will also make MRI of head and all things. I dont know how many days i will spend there.
So i will go to hospital in Thursday. Thanks for tell me to who on this page i should send messages with questions.
I will let know when will back from hospital what they told.
Will appreciate for any praying for my good results :-).
God bless You!
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Re: How you can beat BFS - by a 3+ year veteran

Postby Yuliasir on November 13th, 2012, 3:23 pm

Oh my best wishes Kamilla,
by the way I often see here that people having initially wait for weeks and month got their appointments much faster...
I hope you would be much reassured after the exams and checks (holy god what a strange should be a HC system in order to have wait for one year for hospital appointment!!! But I have heard about this, too)

have my hugs,
Yulia
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Re: How you can beat BFS - by a 3+ year veteran

Postby Kamila on November 14th, 2012, 12:01 pm

Hi Yulia!
Thanks for answer!
Yes i live in Poland and system here is wow slowly. Thats why i was shocked they call me so quickly to come to hospital espaccialy that i been told wait 1 year.
I visit today again neurologist just to tell him i go to hospital but he also again make some checking (he is great man really care about people)and in some test this this time it was not good with my muscles, also i react to much by this checking with small hammer ( i dont know english name) so still its no said 100% that its not ALS.
I know now i will go to hospital for 7-10 days. Will let know results. Thanks for all.
Hugs!
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Re: How you can beat BFS - by a 3+ year veteran

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