Denmark calling here....:)

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Denmark calling here....:)

Postby DanielDK on April 21st, 2003, 9:13 am

Hi Everybody!

I´ve been a *beep* mess (pardon my language) for the last 6 months, and when I stumbled across this excellent opportunity to share my experiences & worries with fellow Twitcher´s , I just couldnt help it:)

My name is Daniel, I´m 17 years old, and I live a happy, busy, uncomplicated life here in Denmark with a wonderfull girlfriend ....Yeah right! At least that's what i thought untill the BFS-hell or whatever-you-wanna-callit struck me 6 months ago. So please, please let me tell you my story - I really need to hear from you guys that everything is gonna be okay. Because, well, doctors, do we trust them? :) (Haha)

It all started about 8-9 months ago, when I noticed a rather disturbing tremor in both my hands. The tremor increased, and the doctor diagnosed me with Benign Essential Tremor - And I´m currently on Propranolol, which actually helps on my tremors. Anyways, the tremors are still here, in no way are they debilitating, but still a great source of concern.


The `funny` thing is, that my Father (aged 49), has been having Fasciculations and BFS for 14 months now. And when I started getting the fasciculations all over my body after first noticing my hand-tremor (I know tremor and fasciculations are two completely different things), my Dad had already had it for about a year. So there might be some kind of hereditary aspect involved here.

Fact is now, that both my father and I are twitching away, although he has it a lot more severe than I do. As you all know, some days are better than others, and I survive on a day-to-day basis. Of course both my father and I have been through all the neuro-exams, we´ve both had the EMG (Although none of us have ever been scanned....dunno, doctors didn´t find it necessary), and all our tests came out fine. I´ve been to 4 diferent neurologists, and they all say it is NOT DANGEROUS, and simply just something I have to live with. However the greatest concern, the biggest source of distress, is not my body having a will of it´s own, it is the darn thoughts I produce deep inside the dark corners of my mind. I´ve been convinced that I suffered from ALS, MS, Parkinson's, Muscular Atrophy, rheumatism, you name it! ANd the worst thing is, I can understand why some people have called me a hypochondriac! But let´s face it - we´re all concerned, and untill anything has been diagnosed, (And usually, NOTHING dangerous is ever diagnosed) -we´re hypochondriachs.

I´ve started noticing every single little movement in my body. My neurologist (Haha, MY neurologist - well, judging from the ammount of times I´ve been to him, it´s fair to call him `` mine`:) told me that I might be connected to some kind of brain-activity-level, that your brain is on high-alert, and therefore you notice things that are harmless, maybe even not excisting. I´ve been worried A LOT. Thing is, before all this atrted, I have NEVER EVER suffered from any health problems at all. All of a sudden, during the last 6 months, I´ve had severe headache, back-pain, anxiety (It´s still very hard for me to sitt or even stand still, i consantly have these non-fasciculation small movements of say belly, torso and arms) colds, vertigo, joint-pains and you name it....Thing is, I dont know if all this is just normal, or indications telling me that I´ll die in a few years, I´ll become immobile, I´ll be like this every single day for the rest of my life, or that I wont be able to function normally. Not a day goes by without me checking & worrying about my body. I´m constantly scared to death.

I hope I didn´t bore you all, but that you might be able to recognize any of this, and calm me down. Please?

Lots of warm greetings from, by they way, a beautiful spring-Denmark!


Daniel
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Postby Jenn311 on April 21st, 2003, 10:06 am

Hi Daniel...

You write very well for someone who is only 17! I'm sorry to hear about your health problems, I know it is very frustrating not to have a diagnosable, treatable condition, always wondering if there is something they have missed...but you've had a clean EMG, and you are way too young to have ALS, twitching isn't a sign of MS...if your neuro tells you that you are fine, be happy!

Hypochondria is a condition characterized by the belief that you are ill despite being told by a doctor (or usually, multiple doctors...) that there is no organic basis for your illness. Simply put, you refuse to believe that there is nothing wrong with you. That is a hard thing to accept when you are having symptoms all the time...I know! I am a big time hypochondriac! And we do have a diagnosable illness...BFS, but it is harmless. Just bothersome. So try hard to not think about your body all the time. Try and ignore the twitching, and you'll find that you hardly notice it after a while. It may even go away! The way that BSFers suffer the most is always thinking in the back of their mind that something bad is going to happen to them and their twitches were ominous...even so! You need to stop wasting your life worrying. BSF has a lot to do with anxiety, there is a direct relation there: THe more you worry, the more you twitch, the more you twitch, the more you worry.

Maybe ask your doctor for some anti-anxiety meds and see if this helps you at all! It may help convince you that you are fine if you can find some relief through them. A LOT of people in this forum are on them. I was on anti-depressants for 2 yrs after I started twitching and it helped a LOT! ANd it sounds like a lot of the problems you are having are anxiety related. Anxiety can make you feel bad all the time. And anxiety usually starts in childhood or early adulthood...Just a thought.
Best of luck to you Danny boy!
Peace, Jen.
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Hello from one hypochondriac to another :)

Postby reneeintx on April 21st, 2003, 6:39 pm

Hi, I think it's a beeping shame you are only 17 and have to worry about this. I'm 39 and not ready to throw in the towel...just yet.
My twitching nightmare started in Dec 02. Same story here..emg clean(still worry I have a slow boat version of a bad disease). Nothing else to due but throw xanax down my throat on occasion and use the best coping skills I can muster up.

Over the past couple of months I've tried not to concentrate on my body so much and it's helped sooooo much. The first couple of months were the worst!!! I would sit on the couch and look at every twitch..looking at my feet, then calves, then my upper arm. Watching it jump here and there..like I could will them to stop :) The only thing it did for me was make my eyes hurt and give me a headache. :shock:

Live your life, love your girlfriend and dream of the future...

All the luck to you and your twitching daddy!

Renee

PS~ someone said on here the only way we will be convinced we don't have a neurological disease is if we strap a neuro to our back and carry him/her around with us. ;)
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Postby dave_stereophonic on April 22nd, 2003, 3:54 pm

Hi Daniel

I'm 19 and was 17 when my twitching etc started (I've posted before on this site about how and when it started if you want to look - save me re-typing it here!), so I know what you're going through. It's so scary when you're young and healthy. Unfortunately the twitching has taken away two years of my life in a way, because I've not stopped worrying since it started. However, I've recently noticed quite a big drop in the amount of twitches I experience, and I'm pretty sure it's because I've finally stopped worrying so much. If you read some of the posts on here, you'll know that you DON'T have ALS or MS or anything else - something I myself have only just begun to get over. My hypochondria and BFS really effected my exam performance during my last two years at school- thinking about it during lessons, excusing myself to go to the bathroom and check the muscles in my legs. I really don't want you to be affected by the same sort of torture - believe me mate, it's not worth it.

I know it's easy to say, but you just have to stop worrying, which is only possible when you truly accept that there's nothing wrong with you. Anti-anxiety meds might be good if you're really having a bad time, although they might make you worse in the long run, in that coming off them will be difficult, as well as any side-effects you may experience. Nevertheless,
I would urge you to try and calm down, and enjoy being a teenager. Are you a generally anxious person? I always have been, and I think that may have influenced this condition somewhat.

The other thing would be to try and cut down on caffeine and stuff - that also made a big difference to me. If you want to talk more, email me - [email protected] I'm glad you've found this board - I've only recently found it myself and it has become extremely comforting.

All the best

Dave
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I NEVER thought...

Postby DanielDK on April 23rd, 2003, 3:07 pm

- That I would ever be able to find such a peace-of-mind!! Ever!

All of you guys in here are just fantastic! Ever since I found this forum, told my story, and was calmed down and `comforted` by other wonderful people, I think I´ve started to realize that having BFS is not a disease, not an obstacle, and not even a problem - You guys are really amazing.

I would especially like to express my gratitude to `Jen`, `Renee` and `Dave`. I really think it is amazing that you guys actually have the time, strength and reserve of energy to help others like me, by telling your own story and making me feel releaved, and certain of my good, `twitching` health!

I´ll definitely keep myself around and oriented about this forum and site, and especially if any worried, distressed BFS-newbies peep in, cuz listening to other people with the same proplems etc., is really a better assurance than anything a million neurolgists could give!

So again, my most profound thanks to you people that took time to read & answer my message - and the best of health to EVERYONE!!!!!!

By the way - ever wondered how danish sounds?



`Life is wonderful, and everything will be allright in the end"`

=

`Livet er vidunderligt, og alt bliver godt i den sidste ende!`


Warmest greetings - Daniel
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Postby Jenn311 on April 23rd, 2003, 3:18 pm

Hey Daniel...

Glad to hear that you are feeling better. Now go out and enjoy your life! You may find that your twitching goes away as you don't think about it... :wink: By the way...Danish looks pretty cool! ~Jen
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A BIG HOWDY FROM TEXAS

Postby reneeintx on April 23rd, 2003, 5:49 pm

Daniel I can't even imagine how it would sound, but it looks like poetry. I don't know about Danish words but I love to eat cherry danish's ;)

You want to hear a texan...
1.Never insult 7 men when all yer pack'n is a six shooter.
2.If you climb in the saddle be ready for the ride
3. and always, always remember to drink up stream from the herd.

Now jump on your trusty steed and ride into the sunset holdin' your sweetheart.

Renee :D
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Postby Jenn311 on April 23rd, 2003, 11:48 pm

Jesus, Rene! Now everyone's afraid to come to Texas! and you forgot this one: famous last words :"Hold my beer and watch this!"
:wink: , ~Jen
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Postby reneeintx on April 24th, 2003, 12:56 pm

Jen OMG, A whole lotta things come to mind with those famous "last words". :eek: I don't know where you are in TX but I'm in the smelliest part....and it ain't horses neither. ;) I live in Houston and since you're in the central part I'm sure the nice aroma's from the oil refineries drift your way... ewww that smell... can't you smell that smell... :)

Maybe all the chemicals in the air that I breathe damaged my central nervous system? Did you hear on the news that they tested the air here and found fat gobules from all the BBQin'

Fat in the air...what next????

Renee( from a very perfumed city)
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Postby Jenn311 on April 24th, 2003, 1:16 pm

Hey Renee...

I feel for you, I will never live in HOuston (again...). I live in New Braunfels, but I'm sure you've never heard of this place...
Houston is stinky, I remember when I was little we lived in Pasadena (we called it "Stinkadena"...We would cry everytime we had to drive past the refineries...it smelled so bad.

Who knows if all those pollutants caused your twitching...I think some people are born twitchers...and it's just a matter of time before they start twitching. Mine has even gone completely away, and come back :( . I know mine is set off by anxiety. THis is a funny story...and it really illustrates how much anxiety controls my twitching. I hadn't twitched much at all yesterday. Then when I fell asleep last night I started having this dream about my sadistic ex-husband. In my dream I was having a major anxiety attack, and I started twitching all over! Then in my dream, a button appeard on my skin, and it was an on/off button for the twitches! I was pressing and pressing, but it didn't work! Finally I woke up, and I really was twitching like crazy! Once I calmed down though, it went away. Geez...what a bad dream!
~Jen
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Postby reneeintx on April 24th, 2003, 1:49 pm

A former Houstonian..HAHA That's hilarious. I worked with this guy that called pasadena that same name LOL and you used to :cry: when you went through it...LOL again

Your dream was crazy! I wish we could just press a button and it would all stop.

Yes of course I know where New Braunfels is.. SHLITTERBAHN!!!!I love that place. I went there a couple of years ago and am yearning to go back. What a beautiful, beautiful place. What a water park! best I've ever been to. My sister lives in Buda... Do you know where that is? I'm so jealous you live near sea world and San Antonio. Actually it's not that bad where I live. Yes, we do get the pollution but I don't smell the stink... I live in the Woodlands...and we're getting our own "river walk" here. They've started building it already. It will be ready in 3 years I think. It won't look as nice as San Antonio, but I'll take it.

My husband works in the oil industry. He's around that stink alot.
Pasa-stinkin-dina is what he calls it. Sometimes I make him change his clothes in the garage because I don't want him bringing that odor in the house. EWW I always wash his Fire proof coveralls immediately and by themselves. I can't have them infecting the other clothes.

BTW~I hope you don't dream that way often. ;)

Renee
*come on you know you want to move back here*

gotta run I need to pick up my son to get some warts burned off..YUCK!
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Postby Jenn311 on April 25th, 2003, 10:44 am

Hey Renee...

The Woodlands aren't too bad...if I had to live in HOuston again that is probably where I'd go. That is cool that you are getting a River Walk! The one in San Antonio is a lot of fun :) .
And Yes I know where Buda is...I pass through there all the time on my way to Austin...that's pretty country out that way!
Sorry , too , that you have to deal with a stinky husband! My twin brother is a chemical engineer there in HOuston, working for a company that goes in and cleans up oil refineries and various other types of plants. He gets to travel all over the world doing that! Scary work though...
~Jen
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