a question from Switzerland

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a question from Switzerland

Postby erikpetersen on June 23rd, 2003, 3:00 am

Hi,

I'm glad to have found this forum. I'm 34 and have been suffering from muscle twitching on and off for about ten years. It seems to be worse after a couple of cups of coffee or with stress. I love coffee (and the coffee is Switzerland is really good) but I think I need to give it up. My wife is a pharmacist and she recommended taking magnesium, but that seems to make it worse. Has anyone had luck treating BFS with potassium or some other natural dietary supplement?

Also, I asked my doctor about my symptoms and he diagnosed me with BFS, but I never saw a neurologist. Would anyone recommend seeing a neurologist? My doctor said serious neuromuscular diseases were usually progressive and I've had these symptoms for a long time. Sometimes it's aggravating enough, though, that I'm worried that I have something more serious.

Best regards

Erik
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Postby Jenn311 on June 23rd, 2003, 6:22 am

Hi Erik..

Welcome to the BFS forum! I love Switzerland!!! Such a beautiful country. You are so lucky! Renee recently suggested that B12 supplements helped her twitching.... or have you tried quinine? That might help. Giving up coffee and stress would help too....but who wants to live like that?

I have been twitching off and on for a while too, and have never seen a neuro. If you feel you need to go to put your mind at ease, why not? I think I will go ever so often when I get stressed, but then I calm down. Then I'll feel anxious....then I'll calm down. It is a vicious cycle.

Well, take care! Enjoy the beautiful scenery and great coffee for me, OK?!
Jen
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THANKS

Postby KERRI on June 23rd, 2003, 6:50 am

I am sorry you have been twitching for sooo long but it helps to see that people twitch for this long without any major problem.

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Postby tlotoxl on June 23rd, 2003, 10:38 am

Erik -

Just out of curiousity, where in Switzerland do you live, Erik?

Coffee also makes my twitches much worse, but I've found green tea is somehow less troublesome. Since I never liked coffee much to begin with and I've been a green tea fan ever since moving to Japan, the transition from one drink to the other was very easy for me. I can understand it must be much more difficult for you, but at least you'll still have great cheese and great chocolate ;).
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Postby reneeintx on June 23rd, 2003, 2:28 pm

erik~

Nice to see someone post that's had this for a long time, and nothing bad has happened.

So, you've been twitching since you were 24 :eek: I congradulate you on not spazzing about your symptoms,and just dealing with it.

You should bottle up that attitude and sell it here.. You'd make millions.

Renee ;)

IMO~ If I had 10 years behind me..I don't even think I'd be here. You're just a long term twitcher!
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Postby Arron on June 23rd, 2003, 3:51 pm

Erik, most people with ALS don't even make it ten years in any condition at all. Your doctor is right, you have BFS. If it were a NMD, you would have had serious troubles years ago, and by now, you would either be dead or a total mess.

I have seen people post on here that have had BFS for over 25 years and they are still just fine. Oh, they twitch, jerk, shake and all of the rest of the stuff that goes along woth BFS, but the fact of the matter is, they are still just fine, so don't worry!

And tlotoxl. my folks have been coffee impoters, roasters and tea distributer's since 1980 and I can tell you that tea has about 60% the caffeine that coffee has, so that may be why you can tolerate tea better than coffee.

Also, tea is very good for your system, especially green tea, which has higher concentrations of EgCg (Epigallocatechin Gallate). Also, Green tea is usually brewed less than traditional black tea. In other words, steeped less and with less amounts of tea, so you are probably getting even less caffeine than 60% of what coffee has. Just thought that would help. Enjoy it!
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thank you

Postby erikpetersen on June 25th, 2003, 12:55 am

Hi Jen

Thank you for your reply. Yes, Switzerland is beautiful. I'm an American, but my wife is Swiss and we moved here last year. I think the medical system here is excellent, but I'm reluctant to see a doctor until my German gets better.

I'm glad to have found this forum to talk to others because BFS is difficult to live with. Even though my doctor diagnosted me a few years ago, I didn't really take it seriously until now. I've been having symptoms for for about ten years, but it's gotten worse lately with the stress of moving to a new country (I hope that's the reason). Now I'm really realizing that this isn't going away! I just hope it doesn't develop into something worse.

Take care and hope all is well with you.

Kind regards

Erik


Jenn311 wrote:Hi Erik..

Welcome to the BFS forum! I love Switzerland!!! Such a beautiful country. You are so lucky! Renee recently suggested that B12 supplements helped her twitching.... or have you tried quinine? That might help. Giving up coffee and stress would help too....but who wants to live like that?

I have been twitching off and on for a while too, and have never seen a neuro. If you feel you need to go to put your mind at ease, why not? I think I will go ever so often when I get stressed, but then I calm down. Then I'll feel anxious....then I'll calm down. It is a vicious cycle.

Well, take care! Enjoy the beautiful scenery and great coffee for me, OK?!
Jen
Last edited by erikpetersen on June 25th, 2003, 1:11 am, edited 1 time in total.
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Postby erikpetersen on June 25th, 2003, 1:08 am

Hi Aaron

That makes me feel a lot better. It's been worse lately, probably because of the stress of moving to a new country, but I've been having more or less the same symptoms for a decade. Exercise seems to make it better as well, so I've been trying to work out more (for instance, it was bothering me a lot yesterday, so I did an intense work out and it was almost gone the rest of the night until this morning). The fact that it's been worse lately still worries me, though, so it's been really hard to cope with. There's been more muscle jerking too, which is annoying. Have people mentioned it getting slightly worse as they get older?

I've heard that about coffee. I've switched to decaf, which didn't seem to help much, so I may give it up all together for tea and see if it helps.

Thank you very much for replying.

Kind regards

Erik


Arron wrote:Erik, most people with ALS don't even make it ten years in any condition at all. Your doctor is right, you have BFS. If it were a NMD, you would have had serious troubles years ago, and by now, you would either be dead or a total mess.

I have seen people post on here that have had BFS for over 25 years and they are still just fine. Oh, they twitch, jerk, shake and all of the rest of the stuff that goes along woth BFS, but the fact of the matter is, they are still just fine, so don't worry!

And tlotoxl. my folks have been coffee impoters, roasters and tea distributer's since 1980 and I can tell you that tea has about 60% the caffeine that coffee has, so that may be why you can tolerate tea better than coffee.

Also, tea is very good for your system, especially green tea, which has higher concentrations of EgCg (Epigallocatechin Gallate). Also, Green tea is usually brewed less than traditional black tea. In other words, steeped less and with less amounts of tea, so you are probably getting even less caffeine than 60% of what coffee has. Just thought that would help. Enjoy it!
Erik
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Postby erikpetersen on June 25th, 2003, 1:22 am

I live in Basel, which is right on the French and German borders in the north of the country.

The food is definitely hard to resist here, especially the cheese, chocolate and coffee. I think going the green tea route might be a good idea. I used to drink a lot of green tea (and also twig tea and black tea) but then switched back to coffee.

Thank you very much for your reply.


tlotoxl wrote:Erik -

Just out of curiousity, where in Switzerland do you live, Erik?

Coffee also makes my twitches much worse, but I've found green tea is somehow less troublesome. Since I never liked coffee much to begin with and I've been a green tea fan ever since moving to Japan, the transition from one drink to the other was very easy for me. I can understand it must be much more difficult for you, but at least you'll still have great cheese and great chocolate ;).
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Postby Jenn311 on June 25th, 2003, 6:51 am

Wow that was so nice of you to respond to everyone's post individually, I have never seen anyone do that!

Hope you are feeling better!
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