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AboutBFS.com • View topic - Widespread fasciculations

Widespread fasciculations

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.

Moderators: JohnV, Arron, garym

Re: Widespread fasciculations

Postby fox2run on August 14th, 2009, 2:45 pm

Try surfing the word "headache"...
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Re: Widespread fasciculations

Postby edado69 on October 5th, 2009, 10:26 am

Fasciculating from the 25/03/2007 (as accurately as I can recall!...)
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Re: Widespread fasciculations

Postby monr905 on November 22nd, 2009, 8:52 pm

Where to begin?

Well Since I posted last, things calmed down a bit. I want on a diet and exersise regimen and lost that 35 pounds. (I'm hovering at about 175 to 180) yay! Anyway. After a HORRIBLE allergic reaction to PPD, the chemical in dark hairdye, and a week of the hystimenic reaction to that, The fasiculations are out of freaking control! Calves, feet, right eyelid are consistant, while other places, abdomen, thigs,etc are sporatic. I can pull my pantleg up at any time, day or night, and show people the "bugs crawling under my skin"

I scheduled a appt with the neruo again who put me though a bunch of physical tests and told me once again, BFS and said see you in three months. He prescribed Gabopentin (sp?) which I am now ramping up on and adding to my 72mg of Concerta, 10mg of diazepam and self-prescriped magneisum suppliments. WTF!?!

My mother-in-law noticed that I have a butterfly rash across my nose and upper cheeks and told me to go to get checked for Lupus. I went and got the bloodwork done. I was actually DISAPPOINTED that the results were negative...and just Rosaceia.

Currently I am waiting to get on the schedule of another neuro for a second opinion and I want to be tested for Lyme Disease. I figure, if a seperate and distinct neruo classifies this as BFS and my Western Blot comes back negative. I can finally relax. Maybe exen ween off then damned benzos!

I know what you guys are thinking and I know inthe back of my head I just need to get the BFS club membership and relax, but it is really hard. I twitch ALL the freakin time! It consumes my life. I feel bad for my wife and kids. I am constantly on edge and miserable.

I feel like a nut job. Eight months since my first twitch and I am still testing for foot drop by hoping up stairs and testing hand strength when no one is looking. I assume that if I had <that which shall not be named>, I would see wasting and definet muscle weakness, by now? ( This is where you guys reply with incredible reassurance! ) lolol

Anyway thanks for listening to me ramble.

-AC
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Re: Widespread fasciculations

Postby jro on November 23rd, 2009, 10:30 am

I like many others have been told or have reason to suspect that our twitching is related to an autoimmune response (antibodies interfering with or irritating the nerves). If I am understanding you correctly, you had an allergic reaction that resulted in increased fasciculations. You should let your neuro know about this and ask what he/she thinks is the significance. There may not be anything to do but documenting a possible cause may be worthwhile since there are immune modulating treatments that can be effective. These are reserved usually for people whose symptoms are progressing to a life interfering point and other symptom relief is not helping. They are also used if any weakness develops. I doubt you will need this treatment but if you ever did it is expensive and if insurance is involved you want the documentation that there is likely an immune-related connection if your neuro agrees.
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Re: Widespread fasciculations

Postby monr905 on November 26th, 2009, 1:41 pm

JRO -

Thanks for the heads up.

I talked to the neruo about the immune relation and he discounted the possibility?!? :oops:

Anyway, The Lyme test came back negative, my standard bloodwork all set and even had a CPK which was normal.

One curisouty I anted to run by the forum though. I have been taking 128% of the daily rec of Magnesium (2 tabs per label) of MagOx. for about 2 weeks now. My Mag result on my bloodwoork came back at 1.8??!?!? Would that mean that I am supplimenting a defencey? Would the number have been really low had I not been supplimenting? Or is it a non-issue.

Major second EMG study on Dec 3rd and then a eval by a ALS committee of ALS "wise men" on Jan 27th,2010.

Changed from Diazepam to Clonezepam at night. It SEEMED to reduce facsics.

Happy Thanksgiving by twitcy support-group!
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Re: Widespread fasciculations

Postby jro on November 26th, 2009, 6:40 pm

I'm glad to see you are going to be seen by some experts. I am sure the reassurance you get from them will help you a great deal. Regarding blood tests and autoimmune issues. I had two tests that showed severe autoimmune issues then weeks later they were normal and have been ever since. The raji cell tests I have had have always shown a problem with circulating immune complexes but I don't think this is part of a standard blood work up. My CPK was actually on the low side of normal. I'm glad to hear that Klonopin (this is the brand name for what you said you are taking) is working better for you. I found it to be the best of the benzos for twitching and trying to sleep. Please let us know if the magnesium supplements help. That is one supplement I haven't tried and I'm not even sure I've been tested for a deficiency. If I haven't been tested, I think I will do it. It would be so great is something simple like that made a difference.
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Re: Widespread fasciculations

Postby monr905 on May 20th, 2010, 11:24 am

*** 1 YEAR ***

Well, as promised to the day, I am back at the forum one year since my first twitch.

Here is the quick and dirty:

1. I know what it is like to panic, uneedlessly about bular-onset ALS. BFS can make your tongue twitch too!
2. I am still here, no musle atophy, twitching like a madman (especially calves 24x7)
3. Vitamins, Gabapenten, and the like? Waste of time.

The only thing that seems to help is actually stress reduction. PERIOD.

For those who got to this thread because they googled "twitching" because they had a random twitch and are now TERRIFIED ABOUT ALS? PLEASE TRY AND NOT REPEAT MY MISTAKES!

YOU DO NOT HAVE ALS. YOU ARE SCARING THE CRAP OUT OF YOURSELF, WHICH CAUSES MORE STRESS, WHICH AGGRIVATES YOUR SYMPTOMS, WHICH SCARES YOU MORE...AND SO ON!

I have a facebook group where I chat about BFS too...




Cheers and Relax!

Anthony
Last edited by monr905 on June 7th, 2015, 12:28 pm, edited 1 time in total.
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Re: Widespread fasciculations

Postby Sandra on June 28th, 2010, 7:07 pm

Hi Anthony!

Welcome, you sound just like all of us here! I am coming up to my 3 year anniversary with this crazy syndrome. And yes I have been where you are, and I can reassure you that it is just BFS. At the start of all this I got straight on the internet and guess what I came up with! This caused my anxiety levels to spiral out of control and in turn made my twitching worse. Anthony I twitch everywhere, everyday mainly in my calves. It all began with a constant twitch in my eyelid that just seemed to spread. I have seen a fabulous neuro here in Ballarat and it really is nothing to worry about. His advice to me was stay of the internet. This forum was my lifesaver in the early days and I come back every so often to try and reassure all the newbies. If you have any questions please dont hesitate to get in touch.

Warm regards
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Re: Widespread fasciculations

Postby franciscotuazon on June 28th, 2010, 11:37 pm

Here's how I currently deal with my BFS:

viewtopic.php?f=3&t=15059

Regards,

Francisco
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Re: Widespread fasciculations

Postby billydog on November 13th, 2010, 11:36 am

I am thirty-four years old and have been going through this irritating benign fasiculation syndrome for two and a half years now. I have fasiculations in the sides of my head, my face, neck, chest, abdomen, back, arms, legs, feet, hands, and pretty much any other place on the body that you can think of. I was also scared at first thinking it may be something life threatening, but I was sent to a great Neurologist at West Virginia University Hospital and she diagnosed me with having Benign Fasciculation Syndrome. Some times the twitches are worse than others but are mostly constantly there. I don't have any clue why I have them but sometimes I think it may be because I use to do a lot of cocaine possibly, but I'm not sure. I was on Xanax at first for about a year then I weaned myself off of them. Now since I don't have coverage, I basically can't do to much. They twitching seems worse when I don't sleep well or if consume a lot of caffeine. And definitely when I'm going through a lot of stress. I wish they would come up with a miracle pill that makes all this go away. Life would be much easier and less irritating. Just my experiences. If any one has any questions, they can post them here and I will answer back in a timely manner.
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Re: Widespread fasciculations

Postby mommylondon on November 13th, 2010, 11:40 am

I have a question...just been kind of taking my own little personal survey...but do you have or did you ever have any sensory issues or symptoms with your experience with BFS???

Thanks for taking the time, and welcome to the board :D

Robynn :D
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http://www.youtube.com/watch?v=Rd6BlNKCkRs
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Re: Widespread fasciculations

Postby billydog on November 14th, 2010, 10:36 pm

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Re: Widespread fasciculations

Postby mommylondon on November 14th, 2010, 10:55 pm

Quote: To mend the hearts of everyone that feels alone.
http://www.youtube.com/watch?v=Rd6BlNKCkRs
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Re: Widespread fasciculations

Postby billydog on November 21st, 2010, 1:12 am

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Re: Widespread fasciculations

Postby billydog on November 21st, 2010, 1:14 am

Sorry if I put that in the wrong place. Still new to this site lol
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Re: Widespread fasciculations

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