Widespread fasciculations

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Re: Widespread fasciculations

Postby mommylondon on November 21st, 2010, 1:26 am

No you posted it in the rite place. Thanks for coming back to answer that for me. I'm sorry your twitches are so bothersome for you, but yes, you should feel fortunate to not have the sensory stuff on top of the twitches, it can be quite disturbing :roll:

Please take care, and welcome aboard :D



Robynn :D
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Re: Widespread fasciculations

Postby billydog on November 23rd, 2010, 10:28 pm

I try to always respond to people's posts. I'm just glad there are people like you that actually take the time to listen and ask questions. I'm the same way. I ask a lot of questions. I have a question for you. Do you experience a lot of different, weird twitching everywhere or is it usually in certain areas? Just curious!
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Re: Widespread fasciculations

Postby mommylondon on November 23rd, 2010, 10:55 pm

My feet get quite a few and I have a hot one in my forearm the past few days. All the rest and just random pops every where else, they can really hit anywhere, and I do mean anywhere :lol:

Feel free to ask what ever you want, I always respond back.

Take care

Robynn :D
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Re: Widespread fasciculations

Postby MangiPNG on November 24th, 2010, 2:35 am

Londonmommy...I presume you deal with sensory issues, right? I've delt with a ton and it sucks. What did your neuro tell you about the possibility of having widespread twitching as a result of MS? My neuro said it wasn't possible bc people don't get widespread twitching with MS, which was confirmed by people I chatted with on an MS forum. Have you ever heard of an MS case with widespread twitching?? I've had so many sensory issues that resemble MS (minus the diffuse twitching), it's hard for me to totally rule it out.
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Re: Widespread fasciculations

Postby mommylondon on November 24th, 2010, 11:38 am

Mangipig, I dont even worry about MS, My sensory issues were to widespread. The only one that likes to stay in one place is the numby type feeling that I get in my right foot, but it comes and goes. They all come and go, come back worse when I get anxious or stressed about something. My neuro said there was no way I had MS, symptoms were all over the place, twitching all over the place, and he did say that people with MS get twitching and atrophy but it is in a muscle that has been severely damaged by the disease. Plus I had no and still do not have any weakness, I felt and still sometimes feel weak, but he said with MS the weakness is in one limb or just on one side of the body, and its measurable by a physician, not just a feeling of being weak or feeling weak all over.

People dont realize how important the weakness factor is with Neurological disease. Its a neuro's red flag to look for, its on almost every symptoms list for neuro disease, not just ALS. And if you dont have any measurable weakness when you show up at a neuro's office, they may run appropriate test to reassure you and to cover there butt, but they are not going to be real concerned about what may be going on with you. Thats how important it is.

I know the sensory stuff sucks, but its not ALS and its not MS, you dont have it and I dont have it, so try not to worry about that one.

If you want to PM me, you are welcome to any time you like and I will answer any questions you may have, I hate to think that you still worry about MS, let me know if I can help in any way :D
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Re: Widespread fasciculations

Postby skoliv on December 6th, 2010, 1:45 pm

" As of today, fasculations are mostly in my right calf, and thigh, sometimes left, right arm, abdomen, right shoulder and right eyelid and ONCE between my left thumb and index finger(that freaked me out! )"


Oh my god why? that is what I have (right hand) ....

really freaked right now....
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Re: Widespread fasciculations

Postby sadiesmummy on January 6th, 2011, 5:18 am

[color=#FFBF00] All the rest and just random pops every where else, they can really hit anywhere, and I do mean anywhere :lol:

Feel free to ask what ever you want, I always respond back.

Take care

Robynn :D[/quote][/color]

Robynn,

I hope you don't mind me directing a query to you directly but I haven't had much response to my 2 posts so far and as I am new to this site, I have looked to see who responds sympathetically and your face keeps popping up, so am hoping that you will be able to re-assure me. I have twitching all over but my main place is my tongue which freaks me out no end. I even get a pressure sensation near the back which makes me feel like I want to vomit. My neuro has never heard of tongue twitching before, but in the UK, it does not seem to be an acknowledged sensation. I have been given a very low dose of valium to take in the morning to try and help me to 'cope' and get through work etc (2mg) but it doesn't take it away. Have had MRI which came back normal, and I seem to get it worse when I am stressed/tired/under the weather. Am hoping that you can suggest ways for me to learn to live with it as I am struggling right now and with work (UNniversity Library), studying for a degree and bringing up 2 children, I need to keep positive. it worries me that no-one else on here seems to have pressure on their tongue?

Many thanks,
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Re: Widespread fasciculations

Postby monr905 on November 13th, 2011, 5:54 pm

Well Hello ABOUTBFS!

I figured I would touch bases since May 2009.

I am still alive! I still twitch and have been looking into the connection of flu shots with BFS.

Very interesting...

If you got the H1N1 vaccine back in 2009 and starting twitching please let me know on my facebook page:

http://www.facebook.com/groups/88467288815/

God bless!

Anthony
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Re: Widespread fasciculations

Postby SuziQ on November 14th, 2011, 10:40 am

monr905 wrote:Well Hello ABOUTBFS!

I figured I would touch bases since May 2009.

I am still alive! I still twitch and have been looking into the connection of flu shots with BFS.

Very interesting...

If you got the H1N1 vaccine back in 2009 and starting twitching please let me know on my facebook page:

http://www.facebook.com/groups/88467288815/

God bless!

Anthony


Hi Anthony,
I noticed that this thread got "bumped," and I'm glad to hear you are doing well.

We actually had a patient in our hospital who got Guillain Barre from this year's flu shot.

Yeh, no. I'm all set with the flu shot, even though we are told it's required in order to work at the hospital during flu season. Oh, well, guess I'll be getting the holidays off. :)

Blessings,
Suzi
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Re: Widespread fasciculations

Postby cincila on November 16th, 2011, 4:31 am

Dears,

I have twitching all over my body, everywhere. I've been twitching for about a year now. No weakness, no balance problems, no vision problems, just twitching and sometimes sensory issues like tingling, esp. my tongue, which is annoying :? . And sometimes I have sharp pains. And I realized I have tremor- my face (right side), when I am smiling, it starts shaking (sometimes). And sometimes I have tremor in my leg- when I push my toes on ground. But just sometimes.

I did not do any tests because I am scared- scared of MS :cry: , because I am female, around 30... I think I would not survive waiting for results. I need to tell that I thought I have MS even 5 years ago, my fears lasted for 6 months and stopped. But now, its been 1 year already!

However, I've visited my doctor and neuro-schrink: they are telling me its not MS and I beleive them, but still I am scared.
I have ups and downs- now it is not as strong as it was in the begining of twitching, but I think of it all the time :cry: , for about a year now, its always this fear of MS somewhere in my mind.

I am highly anxious- if I do anxiety test, I am in the highest group :cry:. I hope my twitching are from my anxiety, like my doctors are saying...
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Re: Widespread fasciculations

Postby mwagner on November 16th, 2011, 11:19 am

Cincila,

I just wanted to say a couple of things:

1. Trust your doctors. They would not think you had MS and just let it go. Because MS is treatable. Not curable, but treatable.

2. Let's say worst case scenario happened and you had MS. You would want to know. I know several people who have MS (I guess it's common in high altitude places like Colorado), including a good friend of mine. You'd NEVER know they had MS, they've lived very healthy and normal lives are still active. My good friend has the remitting/relapsing type (which is 85% of people who have MS), and she said that medication has come leaps and bounds to treat MS. It's not a death sentence, and while it can be debilitating and no one wants to have it (naturally), you'd want to get on medication asap.

Just some thoughts. Don't be so worried. I truly think your doctors wouldn't mess around with this.

Did you know that one of the primary signs of MS is if you have blurry vision? In my late 20s, I went through a bout where I thought I might have it (me legs were in horrible pain at night), and the doctor asked if my vision was okay which it was. She said that was such a major symptom of MS, that she wasn't worried about me. She gave me some blood test which I passed and that was that.
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Re: Widespread fasciculations

Postby cincila on November 16th, 2011, 2:47 pm

Thank you!

I am so silly- you know, after I've read your post I googled early simptoms of MS- I never did before... I googled twitching and when I saw something about MS, I couldnt open, I was scared... so I presumed that twitches are MS sign. But apartentlz and thanks to God they arent!
First signs are> blurred vision *like you said, balance problems, dizzines, heat intolerance, tingling/ that does not go away for several days&weeks... well, aparently its Bfs :D Thank you for your post! :D
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Re: Widespread fasciculations

Postby mwagner on November 16th, 2011, 3:32 pm

Yes, I'm quite surprised that there are any references to muscle twitching being a symptom of MS. I don't think they are at all. In fact, in the early stages of my googling craziness - I saw on an MS board that that the folks on MS that were twitching were afraid that they had &LS! Can you imagine - already having MS and being worried that you had &LS? Geesh... Awful for them.

So, hopefully you can just put MS and &LS in the back of your mind, and realize that you're part of the BFS club :) Annoying as it can be - just remember it's benign.

Mitra
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Re: Widespread fasciculations

Postby cincila on November 17th, 2011, 3:44 am

Thank you!

But you know what is funny- I am not affraid of ALS, just MS. I think I have MS phobia - 2 ex coworkers had it and I was always listening about it. Then after a very stressful period in my life, I got twitches, when I asked dr. google- bam MS :( . As I said I did not open the link, I was too affraid of it. So my twitches became more and more intense, I was a complete wreck, always thinking of MS, loosing weight because of my nerves...

As for my balance... its fine, I am doing pilates, which is actually based on balance and I think I am one with the most balance in the group :lol: .

But twitching is still here... I need to deal with it somehow. My fears are somewhere very deep in my head, because I get twitches even when I am relaxed...

However, I am really thankeful that you replied to me and confront me with some MS facts :)
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Re: Widespread fasciculations

Postby HypoKev on March 24th, 2014, 6:58 pm

So, if you have muscle twitching that is not localized and occurs all over your body, then it's even more likely NOT to be Multiple Sclerosis?

I have body-wide twitching that is minor, but still annoying. I can't find any definitive answers out there regarding the correlation between muscle twitching and Multiple Sclerosis.

I know it can happen with Multiple Sclerosis, but what differentiates it from BFS? Is it location and areas affected?
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Re: Widespread fasciculations

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