Scottish BFS - Any Help is most Welcome !!!!!

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Scottish BFS - Any Help is most Welcome !!!!!

Postby colind1876 on October 21st, 2003, 2:02 am

:wink: Good Morning all, please let me introduce myself, my name is Colin, Im from Glasgow, Scotland and have been twitching now for about 8 Months, first of all Id like to say that this Website has been a God Send to myself, I thought I was going crazy until I found it, here is my story.
The twitching started, first off in my calves, then slowly progressed all over my body, thighs, arms, buttocks, feet, I left it for weeks then went to my Doctor, I initally thought it was MS or some form of tumour, I was sent for an Evouked Response Test and an MRI of the Brain and Spine and Lumbar Spine (on my request), all came back fine and I was told that Neurologically, I was fine, but BFS was never mentioned to me by the Neurologist, I was just told that there was nothing worng with me !!!.

I went back to my GP who then did tell me I had Benign Fasiculation, but never mentioned any of the other Symptoms, the pins and needles, the numbness (or loss of sensation), which I have sometimes, is it normal for these symptoms to be associated with BFS?

Also (sorry for rabbling on), when Im sleeping, I always wake up, and if I have fallen asleep on my arm on either side, I wake up with numbness and pins and needles, is this normal????, it does go away within mins. Another thing which I have had for the past few months is floaters in my eyes (little black things which dart across your eye), I had my eyes tested last week and was told that there was nothing wrong with my eyes !!, anyone else had this????.

I used to be very active, playing football, going to the gym, but Ive stopped it all because I was so worried about what was going on in my body, as from next week, Im attemping to go back and pump my first iron of the year and try and get fit again, he's hoping !!!!!!!.

The annoying thing for me is, I dont feel ill, just all twitched out and numb sometimes !!!.

Any comments would be most welcome, thanks for listening.

Col D.
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Postby dwl on October 21st, 2003, 2:35 am

Hi Colin,

Welcome from a fellow weegie twitcher. Which hospital did you go to - the Southern General I presume? Neuro's see a lot of people with medically unexplained symptoms. If you're still worried I recommend asking for another appointment with the neuro to discuss your worries. It's MUCH better than sitting fretting for months.

David

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Glasgows Twitching

Postby colind1876 on October 21st, 2003, 2:48 am

David,

I went to Ross Hall, I paid for it myself, it wasnt cheap!!, but for the peace of mind it was worth it, it just horrible everyday waking up with the twitching, although having said that, when I dont think about it, or think about my second love (Partick Thistle), the symptoms are not as bad, do ya think alot of the BFS stuff can all be in the heid???.

Thanks for your advice re the Doctor, I go back regularly to keep them updated, he just wants me to get fit again!!!!! and tells me Im fine!!!.

Did your Doctor recognise BFS as a proper disease??

Cheers CD. :lol:


dwl wrote:Hi Colin,

Welcome from a fellow weegie twitcher. Which hospital did you go to - the Southern General I presume? Neuro's see a lot of people with medically unexplained symptoms. If you're still worried I recommend asking for another appointment with the neuro to discuss your worries. It's MUCH better than sitting fretting for months.

David

PS gawnyerselbigman
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Postby jcavan4125 on October 21st, 2003, 5:31 am

Hi Colin,
All of your symptoms sound very consistent with BFS. You might want to read the articles on this web site that talk about the various symptoms that are common with BFS as well as the post from Arron "BFS in a nutshell" which will give you more insight. Welcome to the board.
Joe... "That which does not kill us makes us stronger"! - Nietzsche
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Postby Greata on October 21st, 2003, 8:28 am

Hi Colin,

I have numbness in my hands when I wake up,{ right hand is far worse} and when I run or walk for long periods. Yesterday the Neuro {during my follow up 3 month appt} tested me for Carpal Tunnel which it turns out I do have in the right wrist only. I have a lot of tingling and numbness in my feet as well, they can almost feel prickly. He had no real explanantion for this. His conclusion to all of this twitching and numbness is that I do not have anything serious....
I exercise every day, lift probably 3 days per week, plus kickbox, run, step class etc...OK I am a little fanatic. This has only helped my condition. One the twitching is no different afterward, and secondly I truly forget about it while I am busy and moving. My advise, is to go to the gym and have fun!!!
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Postby colind1876 on October 21st, 2003, 11:56 am

Greata & Joe,

Thanks for your thoughts and advice, it just makes more sense when you talk to fellow twitchers, thanks again.

CD :)

Greata wrote:Hi Colin,

I have numbness in my hands when I wake up,{ right hand is far worse} and when I run or walk for long periods. Yesterday the Neuro {during my follow up 3 month appt} tested me for Carpal Tunnel which it turns out I do have in the right wrist only. I have a lot of tingling and numbness in my feet as well, they can almost feel prickly. He had no real explanantion for this. His conclusion to all of this twitching and numbness is that I do not have anything serious....
I exercise every day, lift probably 3 days per week, plus kickbox, run, step class etc...OK I am a little fanatic. This has only helped my condition. One the twitching is no different afterward, and secondly I truly forget about it while I am busy and moving. My advise, is to go to the gym and have fun!!!
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Postby Pole on October 22nd, 2003, 3:07 am

Hello Colin
Good luck today in match with MU :D (or maybe you are a Celtic's fan?)

regards
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Postby colind1876 on October 22nd, 2003, 3:16 am

Marcin,

Good morning, contorary to public belief, there are actually more than two teams in Glasgow, Im a follower of "The Great Glasgow Alternative", Partick Thistle (Season ticket holder), we are smaller than both the other Glasgow Giants, but our Club is more family orientated, and non-bigoted !!, which in Glasgow is something, believe me !!!!, I wont be cheering for Rangers this evening !!!.

I take it you are also a twitcher, how long have you had the symptoms? and were you as freaked out as me when they first started??, I find if I just accept it, for what it is, they dont seem as bad, maybe some of it is in the mind!!

Cheers CD :lol:

Pole wrote:Hello Colin
Good luck today in match with MU :D (or maybe you are a Celtic's fan?)

regards
Marcin
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Postby Pole on October 22nd, 2003, 4:06 am

I have been twitching for almost 7 months (all over my body). I had clean EMG and a few clean neuro exams. First months were the worst, now it's better despite I'm still not sure that my condition is benign.


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Postby colind1876 on October 22nd, 2003, 4:27 am

Marcin,

Think about it, the FACT that your EMG and your MRI's came back fine, you have nothing to worry about, my Neuro told me that if ANYTHING at all was wrong with you Neurologically. then an MRI would show this up.

I appreciate that some mornings it very hard to "get on with things" because you are twitching so much, I have it most mornings, but try not to let it bother or worry you, it could be a lot worse, life is for living, not sitting in !!!!!!, to the pub anyone ?????

Whats your football team????.

CD :wink:

Pole wrote:I have been twitching for almost 7 months (all over my body). I had clean EMG and a few clean neuro exams. First months were the worst, now it's better despite I'm still not sure that my condition is benign.


regards
Marcin
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Postby Pole on October 22nd, 2003, 5:12 am

Colin,
you're right - we should live our lifes not to worry, but if you check old posts here you will find that for many people it's not so easy. Human nature. Talking about MRI you should know that that's not a test for MND/ALS (even if somebody has ALS MRI is normal). The main test for ALS is EMG.

Football is much nicer to talk about. My club is Wisla Cracow (despite I live in Warsaw). They won Schalke and Parma last year in UEFA cup and now they are in 2nd round. Today's news in Poland is that Barcelona is interested in the best Wisla player - Zurawski.
And I don't like MU so tonight I will be cheering for Rangers :)

regards
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Postby colind1876 on October 22nd, 2003, 5:26 am

Marcin,

Thanks for the information, after both my MRI's and my strength tests the Neuro never even said anything to me about an EMG, she just told me that I was fine !!!!, Im wondering now should I go for one even after Ive been told Im fine!!.

I hope Wisla have a good season, Thistle are bottom of the Scottish Premier at the moment and playing very badly, relegation by Christmas I reckon !!.

Thanks again, CD. :)

Pole wrote:Colin,
you're right - we should live our lifes not to worry, but if you check old posts here you will find that for many people it's not so easy. Human nature. Talking about MRI you should know that that's not a test for MND/ALS (even if somebody has ALS MRI is normal). The main test for ALS is EMG.

Football is much nicer to talk about. My club is Wisla Cracow (despite I live in Warsaw). They won Schalke and Parma last year in UEFA cup and now they are in 2nd round. Today's news in Poland is that Barcelona is interested in the best Wisla player - Zurawski.
And I don't like MU so tonight I will be cheering for Rangers :)

regards
Marcin
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Postby Pole on October 22nd, 2003, 5:45 am

Colin,
I think that if your neuro told you that you are fine you shouldn't worry. EMG is very technical exam and neuros ussually don't do it if they think that there is no need to do that. Other way - if your neurological exam is OK (reflexes, strenght) there is no need to do EMG (EMG is stresfull because during that exam needles are put into muscles).
Despite that most of people with BFS (and most of this site users) had EMG on their own strong request. Neuros usually says: there is no need to do EMG but OK, for your peace of mind do it. That was exactly in my case.

But now I know, that even clean EMG is not enough for peace of mind. Doubts apears few days later - maybe too early, maybe not tested all muscles they should etc. You can meet people here which had several clean EMGs and still are afraid of ALS.

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Postby sheilainsa on October 23rd, 2003, 9:51 am

Hi Mr Partick Thistle

My dad was a great celtic supporter, but I'd still cheer for rangers against MU (didn't do much good though).

I'm a Scottish expat out here most of the time in Saudi Arabia (but head back to Largs whenever I have the chance). I have twitching, tremors and jerks but not much cramping, and have been through all the neuro/EMG stuff. I'm coming to the conclusion (like Aaron) that this BFS stuff is not neurological, maybe liver or thyroid or something else (maybe a rare form of midgie bite) but I don't go with the anxiety route unless its an allergy to increased adrenalin, as mine started while I was doing OU exams which I really didn't care too much about.

Anyway, nice to see more Glesca people about. Hear the weather's been kinda chilly for October.

Hope you hang around.

Cheers
Sheila
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