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whatsgoingon

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Hi,

Over a year ago I got the diagnosed BFS. I'm twitching 24/7 in both calves and widespread a couple every hour.
Now my twitching has increased and mainly in my both arm. I now get twitches every 30 seconds in each arm. Does this increase of twitching point to ALS? Can in still be 'bfs' if you twitch this much?

Justin
 

Zaphoon

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With BFS, you can twitch like the devil for years. The good thing about it, though, is that the twitches stay benign and the syndrome does not morph into a disease. BFS can be a very troublesome, nasty thing to live with but you will not suffer progressive weakness and muscle atrophy with it.

Zaphoon
 
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BethU

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Yes, it is still BFS.

Additional twitching as you describe it points AWAY from ALS. Widespread twitching is NOT an early symptom of ALS.
 

whatsgoingon

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Hi ,

You say twitching doesn't mean anything but I just read Lori's story. Marc 06 fascics, clean EMG - later on cramps and in April 08 a bad EMG now in August 09 they suspect MND. So she had a clean EMG and just twitching... Can someone explain this?
 

MtPockets

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All I can say is as my ALS limb onset spread up my body, and the muscles became disconnected from the nerves, or whatever you call it, the twitching stopped. I have now lost the use of everything from the waist down and that area never twitches, yet my upper torso where the ALS is spreading is twitching all the time.
I know that is not much help from a technical point of view, but it is the results of what happened to me. As the muscles atrophied, they stopped moving, even twitching.
 

whatsgoingon

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Thank you MtPocktes
I'm twitching like crazy but neuro diagnosed me with BFS, but when I read Lorie's story I really doubt my diagnosed. Today I also read a story of a young man , Corey Reich - 23 who had symptoms for several years before his diagnosed. So I really question my twitches.

Justin
 

MtPockets

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I understand your concern. How long have you had the twitches and in what parts of the body?
Mine began in my feet, moved slowly up. Now they are all the way to neck, arms, hand, etc. It took since Jan of 2006 for this progression. I have been told I have a form of slow progression, Thank God.
 

whatsgoingon

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I got them for 1.5 year now,
where: everywhere! My calves are going non stop and widespread every two minutes - mostly arms , back and neck.
 

MtPockets

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Bfs?

If in that length of time you have not lost the use of your muscles, it sounds definitely like BFS. This of course is my opinion.
I would believe the Doctors diagnosed and be thankful. Worring about it being ALS is probably not helping either.
 

AndyDJX

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Some people who twitch get ALS, most people who twitch don't. Your only symptoms are twitching; please don't doubt your BFS diagnosis when all of your symptoms are consistent with it. Is it POSSIBLE that you will get ALS? I guess anything's possible and you can find a few rare cases to prove that. Is it LIKELY you will? Absolutely not. Try to focus on the scenario that is not only more positive, but also far, far, far more likely.
 

Zaphoon

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If you look at the criteria for diagnosing ALS, "twitching" is not on the list. Neither are fasciculations (or whatever else you may want to call them).

You have to have upper and lower motor neuron death with signs of such in several different locations of the body.

A few of the prominent hallmarks of ALS are progressive weakness and muscle atrophy. Lower motor neuron death is what causes the muscles to atrophy.

If you are not experiencing progressive weakness, you most probably do not have ALS. Give your neuro a big "Thank You!".

Zaphoon
 

Lorie

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Twitching/Fasiculations in ALS!

Amyotrophic lateral sclerosis

Please click and go down and READ Diagnosis!

Yes I went almost two years with Twitching/Fasiculations and Muscle Cramps! In Feb 08 my EMG started showing abnomalites! Then in June Abnormal from Neck to Feet! Atrophy in Left Foot and Calf. Severe Denervation in LOWER BACK! I am batteling Fatigue! Going to a Specialist next week at U.A.B. All other test has ruled out anything else!

Lorie
 

Blizna

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I dont read Corey's story but I guess the symptoms mentioned several years ago were not just twitching. About Lorie, its really sad but with familial ALS (since her poor brother got ALS too) it was observed more frequently.
 

MtPockets

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I am sorry to hear of your increase in symptoms.

I encourage you to focus on the fact that this world is not our home, we are passing through. Our trials seem so many now, but Jesus said:

John 14:1-3
1 Let not your heart be troubled: ye believe in God, believe also in me. 2 In my Father's house are many mansions: if it were not so, I would have told you. I go to prepare a place for you.
3 And if I go and prepare a place for you, I will come again, and receive you unto myself; that where I am, there ye may be also.
One day soon our trials will be over, and it will be worth it all.
I share your heartache and pray for peace in the midst of the storm.

Christian :: Jesus Loves You and So Do I. picture by ShakeyMarble - Photobucket
 

scootermax

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yeah i am scared this is
contagious

my mom has bulbar palsy
her slurred speech began after getting a amalgam filling in her metal teeth in november 08

now that she is not accepting a feeding tube and will
go to palliative care very soon

i have felt twitches in my calf and left rib cage and left shoulder (i had it them rarely come a month or more ago) but i would just hit the muscle and it would stop

now that they have started it has hit me more that this could be the begining of als

i mean my mom had it
and we live a basement and i think the mold in the bathroom has something to do with it

well there is no sure cause for als/bulbar palsy so why would it not be MOLD that is causing it or triggering it (aside from amalgam fillings)

when she would caugh her saliva would hit my face (by accident)
but i am truly afraid that could be the way i got it as well

#&)(*! i am just 22
she has it at 56 and her mom had bulbar palsy at 71

(holds head devastated)
but i can still move and i have no noticed weakness yet
so if i do develop als in 1-2 years i do not want to look back and know i wasted this time worrying and crying instead of enjoying life
 
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