20 so far today - and counting

This forum is for posting your personal experiences with BFS: symptoms, doctor visits, fears, etc.

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20 so far today - and counting

Postby sarahtonin on October 30th, 2003, 9:36 am

:)

At last - people who aren't going to think I'm completely insane!

After reading many posts yesterday I have been counting my twitches today - it's 2.30 p.m. and I've had about 20 (though just had a cup of tea and they seem to be getting a little more excitable).

My neurologist told me 2 weeks ago that I had BFS, that it was very common and that it would go away. Like almost everyone else, I was convinced I had MND. Still am, even though he categorically told me I didn't (but didn't do EMG). And before MND I was convinced I had MS because it all started with tingling in my hands and feet.

Anyway, I'm trying to be positive but I have had a tingling, crawling feeling in my right foot (base of big toe) almost constantly these last few days and if I sit and watch the muscle will twitch ever so slightly and move my big toe - it really gives me the creeps. Must be sinister!

I am sitting here at work staring at my foot - everyone must think I'm crazy (and sometimes I think they're right!)

Sarahtonin :wink:
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Postby Jenn311 on October 30th, 2003, 10:12 am

Hey Look Marcin....

Another person who was afflicted with tingling first! Welcome Sarah :D !

Isn't it a relief to find out you are not going crazy? I've heard that it's both common and that it's rare to be afflicted with BFS....not sure which to believe. But I've never met a person in real life who was a twitcher like myself...but then it's not something you bring up at a party either. One day my dream is to have T-shirts printed up for all of us that say: "Do you twitch, too?". Well, that's pretty corny....how about: "Ask me about my BFS!", "Twitchers Unite!", or "I twitch for fun!"

OK...just kidding. Kinda....

ANyway, welcome.

Jen :wink:
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Postby garym on October 30th, 2003, 4:07 pm

welcome to the group. sorry you're here, but glad you found us. Just have to say, be glad that you twitch so liitle. I twitch twenty times from the time I wake up until I make it to the shower.

Good luck,
Gary
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Postby nickic on October 30th, 2003, 5:00 pm

Mine too started with temporary numbness and tingling! I too was convinced that I had MS and then MND or ALS as it's known in America. I still sometimes think that I do have it no matter what my gp or neurologist said. Which nerologist did you go and see in London? Is he an MND specialist. I went to see one in Harley Street who apparently is top in his field.

Anyway, welcome! It is a joy this site and my anxiety has been greatly reduced since finding it!

Nicki
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Postby sarahtonin on October 31st, 2003, 3:57 am

Hi and thanks all for making me so welcome - though I too wish I weren't here!!

For all you thousand times a day twitchers, you'll be pleased to know that after my last post I went into mega twitch overdrive and had another 100 odd yesterday.

Just one question, which I'm sure has been answered a hundred times before but which is concerning me - is it "usual" to get a couple of twitches in your foot which just don't go away (i.e. at least a week now) and your foot feels like it's twitching even when you can't see anything?

Nicki - I saw Jeffrey Gawler - not sure if he's an MND specialist but he told me that he sees about 4-5 medical students a year who come in about twitching so I'm assuming he knows what he's doing. Apparently, he was the first neurologist in the UK to diagnose CJD - not related I know, but interesting. Who did you see? Might go and see them next if I can't get over my paranoia.

We may all be twitching but at least it's Friday :)

Sarah
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Postby sarahtonin on October 31st, 2003, 3:57 am

Hi and thanks all for making me so welcome - though I too wish I weren't here!!

For all you thousand times a day twitchers, you'll be pleased to know that after my last post I went into mega twitch overdrive and had another 100 odd yesterday.

Just one question, which I'm sure has been answered a hundred times before but which is concerning me - is it "usual" to get a couple of twitches in your foot which just don't go away (i.e. at least a week now) and your foot feels like it's twitching even when you can't see anything?

Nicki - I saw Jeffrey Gawler - not sure if he's an MND specialist but he told me that he sees about 4-5 medical students a year who come in about twitching so I'm assuming he knows what he's doing. Apparently, he was the first neurologist in the UK to diagnose CJD - not related I know, but interesting. Who did you see? Might go and see them next if I can't get over my paranoia.

We may all be twitching but at least it's Friday :)

Sarah
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Postby garym on October 31st, 2003, 10:40 am

The arches of my feet twitch in the same places all the time and they have been for nearly three months now. I cannot see them most of the time, just feel them. Every now and then they are barely visible. The best advice I can give you is to try and stop worrying. I almost laugh when I say that, because I'm the king of worry. Wish I could follow my own advice :lol: , but I'm trying like heck.

Good luck,
Gary
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Postby sarahtonin on November 3rd, 2003, 11:32 am

Thanks Gary

Just one more itsy bitsy comment about my foot I promise (maybe?).

It seems that it is normally fine but if I put my foot up on my other knee (obviously to get a good look at the foot :? ) or sit cross legged it starts to tingle - all pins and needley- and then it starts twitching - I can feel it coming :shock:

I wonder if this is due to my position - the nerve getting trapped or something, or just a BFS symptom? Whadya reckon?

Sarah
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Postby garym on November 3rd, 2003, 1:53 pm

I think it is just part of this craziness called BFS. Nothing to worry about, IMHO.

gary
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