SORRY

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SORRY

Postby KERRI on June 18th, 2003, 10:57 am

I saw the neuro today, and he said basically, Kerri, I cannot even diagnose you with benign fasciculations, let alone MND. You do not have enough that warrants either, he said that if I truely had MND or BFS he would see the fasciculations, he had me sit in a gown and he staired at my legs, my arms and then my shoulders this went on for a while, he could not see one fasciculation, he said fasciculations are sooooo common especially when you work out or type like I do, you use those muscle for long periods of time and they are not used to it, then they twitch, he gets finger twitches to. He said he heard that blood pressure meds sometime help to relieve these problems and he is going to try them, he set me up for one more EMG OF THE LEFT ARM, and left leg, the arm is where it all began, so he basically said if they are negative we are definately in the clear :D, he did the basic neuro exam and said my muscle look great and I am actually stronger than I was. He told me it is natural to worry but, he has twitches much like these, he told me they are nothing, but he wants me to see another specialist, a friend of his, he hopes this will put both of our minds at ease, so I see the specialist on the 29th and have an emg on the 29th of July.

I am sorry if I upset you all, but this has been a long difficult road for me, and I do not think any of us will every completely recover from the psychological trauma of this entire ordeal , but if we help one another we can try. Thanks, and I am sorry Arron for my stupid waky posts, but Pole if you are scared contact me, you will be scared for a while but time will cure your fears, after a while you will see it is all okay. I thank god for neuros with care and compassion, but he would not be like that if it were not for my neuro friend who has spoken to him, my friend yesterday told me "kerri you are so smart and tough, how is this happening, how are you letting your mind get the best of you, you are fine". Another doctor friend of mine works in pain management and he is a fellow twitcher as well as an ER doc, and my best friend and my fiance all twitchers. They were all talking to me yesterday, I had a break down period I began to cry and they all joked and tried making me feel better, they said they are going to call me "twitchy woman" , they are all so great I love them and you guys.

I am sure I will have more crazy days to come, but I will remember that I am not alone, I have people who care about me. I am going to be okay.


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Postby Arron on June 18th, 2003, 11:22 am

Kerri, that's great news you had from your doctor. Didn't I say before that I didn't think you had BFS either because you said you only twitch every so often? Well, BFS twitches are pretty much constant and all over your body at any given time. And if it were a NMD, it would involve weakness and the inability to control your muscles.

It's OK to be scared when you think something is wrong or that you "might" have a serious condition such as ALS, even though whatever information you read on ALS was totally misleading. But when you have several neuro's tell you your are OK and you've had several clean EMG's and there is no clinical sign of any disease what so ever, yet you still "choose" to be freaked-out over something that clearly isn't there, it becomes a problem. Especially when it is running and ruining your life.

I hope now, you'll be able to move-on and forget about ALS and even BFS. It's OK to twitch! It doesn't mean anything is bad UNLESS it involves numerous other CLINICAL problems, which you certainly don't have.

Good luck to you :-)
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thanks Arron

Postby KERRI on June 18th, 2003, 12:15 pm

Arron wrote:Kerri, that's great news you had from your doctor. Didn't I say before that I didn't think you had BFS either because you said you only twitch every so often? Well, BFS twitches are pretty much constant and all over your body at any given time. And if it were a NMD, it would involve weakness and the inability to control your muscles.

It's OK to be scared when you think something is wrong or that you "might" have a serious condition such as ALS, even though whatever information you read on ALS was totally misleading. But when you have several neuro's tell you your are OK and you've had several clean EMG's and there is no clinical sign of any disease what so ever, yet you still "choose" to be freaked-out over something that clearly isn't there, it becomes a problem. Especially when it is running and ruining your life.

I hope now, you'll be able to move-on and forget about ALS and even BFS. It's OK to twitch! It doesn't mean anything is bad UNLESS it involves numerous other CLINICAL problems, which you certainly don't have.

Good luck to you :-)



I thank you for your post, that was nice of you, I am happy that everything is okay, and I think you are right we are all okay, I do plan on coming back to help people though, I know that this is a hard thing to deal with and I would never want someone to go through what I went through.

EVERYONE THIS IS GOING TO BE THE MOST IMPORTANT ADVICE YOU WILL EVER RECIEVE, AND I AM SURE YOU HEARD IT ALREADY.

1. If you have not yet typed twitch into your computer for a search, do not start now.

2. Stay away from the ALS sites those people have ALS and they cannot help you.

3. Ignorance is bliss, the less read the better you will get.

4. If you do not twitch everyday, do not worry and if you do, do not worry if you have seen a doc or have twitched for more than a year.

5. when you feel crazy send me a message because I have been just as crazy if not worse.

6. DON'T WORRY BE HAPPY.


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Postby jcavan4125 on June 18th, 2003, 4:29 pm

EXCELLENT ADVICE Kerri!!!
Joe... "That which does not kill us makes us stronger"! - Nietzsche
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Postby dave YY on June 18th, 2003, 5:06 pm

Kerri,

I didn't know you twitched that little! Hey no worries, I've read that fear of ALS is its own kind of hypochondria... even people who don't twitch can latch onto that particular disease and not be able to let it go...

Sounds like you ought to put this whole issue to bed, for good. You don't even have a good reason to worry about ALS!!!
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Postby Jenn311 on June 18th, 2003, 5:33 pm

Hey Kerri!

Glad to hear that! I hope you are feeling great right now! :D Good advice too....

Dave, I know what you mean about the hypochondria!
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To rest for sure

Postby KERRI on June 18th, 2003, 7:19 pm

I do not twitch nearly as much as you guys but even one twitch in a day is h*** for me, I did have times here and there where twitching was outragous, but I was always uptight and crazy when it was happening. If I had never typed "twitch" in the computer it never would have gotton this far.

I thank the lord for understanding friends and docs, and this site.

DURING THE NEURO EXAM TODAY, THE BRISK REFLEXES WERE GONE, MY REFLEXES WERE COMPLETELY NORMAL.

I asked my neuro why and he said, today you are not as nervous as you have been, and that makes a difference if your adrenaline is pumping your reflexes will as well.

He laughed and said, but Kerri it does not matter because your fine and I never had any reason to think you had pathological reflexes. This is not to scare you about reflexes, he also told me loud and clear and laughing YOUNG PEOPLE HAVE BRISK REFLEXES.

I feel like I have woken up from a terrible, terrible nightmare.


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To rest for sure

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