Update on my status

Information about how to manage or reduce the severity of BFS symptoms

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Update on my status

Postby Noturnus on January 29th, 2014, 7:04 am

I stopped comming here for a time because I want to avoid thinking about this twitches all the time.

More than 4 years later (can say I am a long timer twitcher now):
The bad news for me is that I am still twitching and I am still having the aches on my arms.
The good news is that there is no new symptom or sing to indicate that I have something serious.
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Re: Update on my status

Postby leaflea on January 29th, 2014, 10:35 pm

Thanks for stopping back. Having the vets come back is great and this today was just what I needed. I had been doing really well after neuro exam and EMG, and sure still am a lot better than I was before them still, but all my symptoms are back in full force. Twitching all over and issues with my arms/hands and perceived weakness and atrophy. My forearms (most especially left) and hand feel week and twitch like crazy. I try not to look for fear of seeing atrophy. I was convinced I have it. Others also see what I'm talking about, quite easily. But the neuro just said "there is no atrophy there." I am convinced this BFS can actually change the appearance of our limbs. Thanks again for stopping back, you obviously know it is helpful even if it is only for one person.
Matthew 6:27 Who of you by worrying can add a single hour to his life?
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Re: Update on my status

Postby Noturnus on January 30th, 2014, 7:06 pm

Was your EMG clean?
If you think your muscle have atrophy and the EMG on this muscle is CLEAN, It is not atrophy.
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Re: Update on my status

Postby leaflea on January 30th, 2014, 9:38 pm

Yes, thank you for that reminder. When it is all going on, it never hurts to be reminded of the facts. EMG of that limb was clean (only limb tested and the most symptomatic one so I am okay with that). I am sure it is my mind. I have what looks like swelling in the forearm above the wrist, making the wrist look really skinny and atrophied. No one can tell me what it is, but it is evident to anyone who looks and happened over last summer. It looks like "pseudohypertrophy," something that happens with muscular dystrophy, neuromuscular hyperexcitability, and "rarely other neurogenic diseases." I don't have MD (though I do have some of those traits), and I don't think I have a neurogenic diesease, so this leaves "neuromuscular hyperexcitability" and I can't get a handle at all on what exactly that term means. This is about all I can find about it. My neuro looked over my wrists and told me that there is naturally very little muscle there, and the hands and wrist are not atrophied. My left one feels strange and twitches a lot, especially the thenar and some pops on the one between the thumb and forefinger. The both forearms (top) ache quite often and left thenar titches and aches quite a bit.
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Re: Update on my status

Postby TwitchyDoc on January 31st, 2014, 7:37 am

Noturnus, good to hear from you! If I remember correctly, you were the one with tongue twitching and few fasciculations on his calves?
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Re: Update on my status

Postby edado69 on January 31st, 2014, 11:10 am

Noturnus wrote:I stopped comming here for a time because I want to avoid thinking about this twitches all the time.

More than 4 years later (can say I am a long timer twitcher now):
The bad news for me is that I am still twitching and I am still having the aches on my arms.
The good news is that there is no new symptom or sing to indicate that I have something serious.

Many thanks for the update. I am having difficult times lately (last week has been characerized by profuse twitches) and having posts from other long-term twitchers does help a great deal.
Have a nice day
Fasciculating from the 25/03/2007 (as accurately as I can recall!...)
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Re: Update on my status

Postby Noturnus on February 2nd, 2014, 6:24 am

TwitchyDoc wrote:Noturnus, good to hear from you! If I remember correctly, you were the one with tongue twitching and few fasciculations on his calves?


Yes. I am having tongue twitches.
90 percent of my twitches are upper body.
I have very few twitches on calves.
Last week i got a terrible cramp on my right triceps.
There are weekes when I twitch like hell. There are others when I rarely get them.
When I am on a bad day, my muscles become very painfull.

Today, I am on a good day. Very few twiches. Almost no aching on my muscles.

More than 4 years later, my strengh is the same it was before this started.
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Re: Update on my status

Postby TwitchyDoc on February 2nd, 2014, 6:33 am

Thanks Noturnus, I am having bad days recently so it realy helps to hear that. I too barely have calf twitching and do have tongue twitches. Recently, I have pretty frequent abdominal and chest ones...
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Re: Update on my status

Postby Noturnus on February 2nd, 2014, 6:54 am

TwitchyDoc wrote:Thanks Noturnus, I am having bad days recently so it realy helps to hear that. I too barely have calf twitching and do have tongue twitches. Recently, I have pretty frequent abdominal and chest ones...

Do you get Cramps sometimes? I started to get them. 2 or 3 per week.
I am the man who did 6 clean emgs. My last was 2 years ago.
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Re: Update on my status

Postby TwitchyDoc on February 2nd, 2014, 8:50 am

Not really, I have had 2 cramps since this started (which was 6,6 years ago).
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Re: Update on my status

Postby angelormr on February 5th, 2014, 4:43 pm

leaflea, my story is like yours. I also have what appears to atrophy in the forearm, very thin hands, a big dent between the middle finger and little finger. I also have pain, burning, cold in those places. My neuro said that I have BFS, but I can not find all that normal.
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Re: Update on my status

Postby edado69 on February 20th, 2014, 10:35 am

Noturnus wrote:I stopped comming here for a time because I want to avoid thinking about this twitches all the time.

More than 4 years later (can say I am a long timer twitcher now):
The bad news for me is that I am still twitching and I am still having the aches on my arms.
The good news is that there is no new symptom or sing to indicate that I have something serious.


Thank you for the update. This is always helpful, particularly for those who have been twitching for days or weeks.
Fasciculating from the 25/03/2007 (as accurately as I can recall!...)
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Re: Update on my status

Postby keomagnes on March 27th, 2014, 10:36 am

The bad news for me is that I am still twitching and I am still having the aches on my arms.


Hey, I was wondering if this pain affect your quality of like?! Is this a constant pain or just when you press the spot?

I ask you that because I'm really afraid of having muscular pain. I've been twitching for the past month, no pain yet.
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