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:arrow: calling Jenn311 or anyone else....:)

PostPosted: April 25th, 2003, 2:19 pm
by reneeintx
This is Renee in Houston..again. I was curious.. what did your doc(neuro) say about your BFS. Do you have to go back for other appt's, what do you do for the symptoms?

Today's been rough :( I was outside pressure washing my house..getting it ready for painting. The neighbor was mowing his lawn. These people moved in at Christmas time. I never introduced myself because of my health concerns(freaking about ALS) I didn't really feel like talking then. Well today we introduced ourselves. I told him why I haven't spoken to them being concerned over my "new syndome". I told him BFS people often think they have ALS. He told me his co-worker was diagnosed with it 3 years ago. He was in his late 30's(same as me). His friend was a jogger that started falling down while running. He went to the doctor they told him to cut back on running. Well he was still falling. I guess then he goes to a neuro.My neighbor says the guy has tests done...conclusion ALS. When he said that word my heart starts flip-flopping, my legs are getting wobbly and I feel like I'm going to pass out. I hope he didn't see that I was freaking out. I had to come in and rest after that.. emotional overload :(

Well it's been a couple of hours, I've calmed down. I finished my house washing. GUESS WHAT.. I didn't fall down. WHEW :)

Just goes to show yes I have BFS and yes I still panic over the what if's.

Renee(wiping the sweat from my brow from working and emotional panic)

Why did the subject put (arrow) there? Oh well stupid me

PostPosted: April 25th, 2003, 2:22 pm
by reneeintx
no msg

PostPosted: April 25th, 2003, 2:45 pm
by Jenn311
Hey Renee...

I have to purposefully avoid even thinking about those three letters or I get weak in the knees! And seaty, and get palpitations... I totally understand where you are coming from! Sorry to hear that your neighbor was being insensative. But you know you don't have rejoice! You are much more likely to die from a plethera of other causes...but you don't think about those do you? Personally I have known lots of people that have died in car accidents...but quite guiltily I don't always wear my seatbelt, even though it saved my life in a head on collision once, and my older brother had his chest crushed in a minor accident and died as a result of not wearing his.

You asked about what the my neuro said: Actually I have never been to see the neuro. My PCP told me when I went in with all over twitched in late August of 1998 that unless I had associated weakness, that it was benign and I didn't need to see a neuro. She even said that she sees people all the time with benign twitching, and it doesn't worry her one bit. She put me on Effexor which I took for 2 years, in which time my anxiety and even my twitching went away. However I gained like 50 lbs. while on it. So I am not willing to try SSRIs again.
So even though I go for long periods of time without twitching, and freak if it starts up again...I have still never been to see the neuro.

The bottom line is: You need to go out and enjoy life! You are young and healthy, and if you let this twitching control you, you might as well have ALS...because being in constant fear is no way to live! I know, I know...easier said than done: I constantly replace one health anxiety for another! I am a hypochondriac extrodinaire. There have been times in my life when I was sure something terrible was wrong with me, so I would avoid going out, making plans for the future. But the truth of the matter is that I am one of the luckiest people health wise that I know!
Thank God for that and Knock on Wood!
Here's looking forward to a long life, even if it is with these pesky twitches...!

PostPosted: April 25th, 2003, 9:18 pm
by kim
Hi Twitching Buddy! :D

She's right! Get out there and live! I've said this quote a millions times, but I truely believe in it!

" We can't choose how we will die, but we can choose how we live!"

We only get one shot, make it the best life you can!



Hi kim and Jen

PostPosted: April 27th, 2003, 11:17 pm
by reneeintx
Jen and Kim

You two are both so comforting. I hope to be like you guys someday...soon I hope. I try to comfort people here when I can but sometimes I feel like a fraud, because I shaking in my boots myself.

You're right on Kim. We can choose how we live. The daily struggle with these symptoms seems to decrease but very slowly.
I painted the outside of my house today for 7 hours. I can honestly say while I painting and had the radio blastin' (listening to 80's music..Duran Duran, ACDC, ABBA , John Bon Jovi(OMG)..You get the picture... I didn't think of my symptoms once. I don't even remember twitching.
My retina's were burned by the sun(ouch) even though I had sunglasses on. This Texas sun is brutal sometimes.

I'm sorry if I've been whining lately. My husband has been in Russia for the last 2 weeks. When he's here, he can calm me down. You see I live in this huge city of 4 million and I have no family here to lean on. These forums are all I've got, and it's worth it's weight in gold when wonderful people post such as you two.

Thanks for being here!

Renee :)

hi renee

PostPosted: April 30th, 2003, 1:23 pm
by Renae
hi renee (it always seems weird to spell it that way, by the way, thanks for the compliment on the spelling of mom had to be different, i guess)

anyway...i'm so sorry to hear that you had a little scare with your neighbor. we all have our days, i know! sounds like you're doing pretty well for the most part, though. good music to paint your house...:) gotta love that old 80's stuff...that will help you forget your worries :)

i know what its like to have no family around, too. i live in massachusetts and my family is in vt/nh...about 2 hours away and the rest in florida. so, its not like i can jump in the car and be there in a few minutes for some moral support and i always feel guilty worrying my mom or my sisters about my health probelms anyway. they're bigger worriers than me!

well, you hang in there and continue to be strong!! i don't know that i really had a point with this post other than to give you a little encouragement!!

take care...
renae :)

PostPosted: May 1st, 2003, 12:13 am
by reneeintx
Thanks for replying Renae. Sometimes it gets a little lonely down here. I guess you know what I'm talking about. I do have a sister about 4 hours away in Austin but her and I never saw eye to eye when growing up and we still don't. She's an RN and I wouldn't dare tell her anything about this or I'd never hear the end of "poor renee with her hypochondria". She's so shallow it's sickening. Most of my other family memebers live in Tennessee. It's a 16 hour drive so when I visit it's a mini vacation.

I don't like to worry my mom either. She goes nuts when anybody tells her about health problems. She worries more than the person with the problem! I have two other sisters one in MN and the other in MS. We're spread all over the country. My other two sisters are supportive. They're also RN's.. but with a different attitude than my older sister.

Again thank you for replying. Just knowing someone out there is experiencing the same thing.. be it BFS or just plain old loneliness is so comforting.

Renee :)