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LONG TIME TWITCHIN

PostPosted: July 7th, 2003, 9:05 am
by KERRI
I have been twitching for over a year as much of you know, and I had my 4th emg rescheduled for the 22nd. I am tired, tired of worrying, and then being happy tired of just about everything. I have seen so many doctors, I have a total of three neuros and about 10 other gp, pain management guys. They all say it is nothing and by now ALS would have progressed but I still have trouble getting all of this out of my head, I twitch twice a day and on my worst day maybe 10 times that was the 4th I had some decaf coffee in the morning and then the twitching began.

I am tired of taking Xanax and wonder if some of the symptoms are not related to the drug, hence the feeling of bugs crawling on my skin sounds like a drug symptom.

Everyone tells me to stop worrying about ALS, but I read posts like POLES that talk about twitching or nerve irritability being the first sign of ALS and then I flip, I have no neuro friend to speak with because he has lyme disease and took three weeks off to rest. I need a friend I mean, maybe I should stop coming here maybe it does make me worse, between Carol and Pole I think I need to be admitted, I am going to go completely insane, am I the only one who feels like this, it seems like I just get my head above water and then I begin to sink again.

4 body parts tested by emg, several months apart, one more emg coming up of two body parts.

AM I OKAY OR WHAT, SHOULD I BELIEVE MY DOCTORS OR NOT. I FEEL LIKE I AM IN A BAD DREAM AGAIN AND CANNOT WAKE FROM IT.

HELP!!!!!!!

P.S. I go to the gym, and my trainer says I am getting much stronger, I can squat with 90 pounds, I push 200 on the leg press and I keep moving up on arms, I went up 10-20 pounds on most of my circuit just last week. I can run a mile and a half, and I have never been able to do that, I am a horrible runner, I can never control my breathing I over compensate, and hyperventilate.

If I can do all of this am I not okay :?: :?: :?: :?:
Kerri

PostPosted: July 7th, 2003, 9:18 am
by Pole
Kerri,

you are OK. I am SURE. You dont even have nerve irritability or excitability or otherbility :))

Don't worry. We just discuss. It has nothing to do with your case.

The only thing I said is that PNH might be a sign of MND (I dont know that, that is my question). But propablly the most cases of PNH is just BFS (and we all know that BFS does NOT lead to ALS).
Do not worry. And I am really sorry that my posts scared you.
Marcin

PostPosted: July 7th, 2003, 9:41 am
by Dale
Hi Kerri - sorry to hear that things are not going well.

For what it's worth, here are my suggestions:

1. Try to stay off the internet. Specifically this site and any others related to any type of medical topic.

2. Try to focus your energy on something else. Didn't you mention in an earlier post that you were engaged & getting married? Try to focus on the wedding plans. What about becoming a volunteer? I volunteered with Big Brothers for several years & was amazed at how much it helped me (all along I thought I'd be helping someone else!). What about the gym? Sounds like the work-outs are going great!

3. Try to change your behaviour patterns. Obsessing is kinda like learned behaviour. You start doing something (looking up ALS stuff on the internet) & it starts to become part of your routine. You need to try to stop that. When you feel the urge, try going for a walk or call a friend.

4. Try relaxation techniques. Meditation, praying, yoga. It sounds corny, but for obsessive types, it works - I do it myself...

5. Try to make an appointment with a therapist. You've made many appointments with Neuro's, GP's etc. & you seem to be getting consistent responses. Try seeing a therapist.

6. Be patient. Realize that you have this hang-up & understand that it's going to take some time to get things straightend out. You seem to have spent a great deal of time and energy getting yourself to the point where you are now. It's going to take a lot of time and energy to get yourself back.

7. Be happy that you live in a great country. Be happy that you have a job. Be happy that you have, what I believe to be, a very understanding boyfriend/fiancee. There is so much to be thankful for!

Sincerely,

Dale

I scare easily lately

PostPosted: July 7th, 2003, 10:11 am
by KERRI
Pole wrote:Kerri,

you are OK. I am SURE. You dont even have nerve irritability or excitability or otherbility :))

Don't worry. We just discuss. It has nothing to do with your case.

The only thing I said is that PNH might be a sign of MND (I dont know that, that is my question). But propablly the most cases of PNH is just BFS (and we all know that BFS does NOT lead to ALS).
Do not worry. And I am really sorry that my posts scared you.
Marcin


I remember being at the early stage like you are, but actually in the very begining I was not that crazy, I mean I did not really worry about it until the twitches became frequent and until I had my 2nd set of emgs and one fasciculation appeared.

I can only say this is a sickening cycle, you never really know if you are okay.

Kerri

PostPosted: July 7th, 2003, 4:13 pm
by Brian_B
if anything you should not be as worried now as you were when it started. if you have been twitching for a year and have no weakness then you need to accept it that it wont get any worse.

I think they are right, if after 4 EMG's you can't accept that you dont have anything serious then you should seriously seek counseling.

PostPosted: July 7th, 2003, 4:23 pm
by Asterix
KERRI.

you had 4 clean EMGS over 10 months, right ?

Dale suggested
1. Try to stay off the internet.


I say: Before you do this, do yourself a big favor: go to the internet one last time and re-read and print out the Mayo Study:
[url]
http://www.nextination.com/aboutbfs/artmayo.htm
[/url]


Here is the abstract for everyone to print it out, frame it and hang it above the bed :)

Conclusion
The syndrome of benign fasciculation, often associated with muscle cramps, appears to be a distinct entity. The historical data suggest that it is multifactorial in origin. The important conclusion is that if the physical examination is normal and the EMG studies are normal or do not suggest motor neuron disease, the patient can be reassured of a completely benign prognosis.

PostPosted: July 7th, 2003, 4:29 pm
by Jenn311
Great post Dale! You too Asterix (I love that cartoon by the way....).
You are fine Kerri. You are the only one who isn't convinced. Start working towards that.
Love ya, Jen