Need some encouragement...I'm new here

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Need some encouragement...I'm new here

Postby BTS on March 12th, 2004, 1:01 pm

Hello All,

First off, I'm new here and am really glad I found this board. It is a great feeling to know that I'm not alone. Anyway, too my story.

Currently, I'm a 40 year old professional male with a wife and 2 children. Unfortunately, some past ghosts of anxiety are creeping back into my life and I don't want that to happen.

Back in 1999, I was out in Las Vegas giving a professional presentation and happen to catch a snippet on the news about Catfish Hunter and his diagnosis of ALS. Now, I'm kind of a worry-wart, and this little incident precipitated a 6 month journey through a personal hell.

I've always been a little twitchy, and have had them for many years, but this took me over the edge. I immediately became convinced that this is what I had and I was going to die...period. Upon my return, I immediately made an appointment with my physician at the urging of my wife. He did a thorough physical and nuerological examination and said my symptoms were related to anxiety and prescribed Xanax. Of course, I was unconvinced. I went back a second time, same conclusion but he agreed to refer me to a Neurologist. The neurologist came to the same conclusion and presribed Paxil. After 3 days, this medication did more harm than good and caused severe myclonus upon my trying to fall asleep. This led to 4 straight days of sleeplessness that resulted in a syncopal-like episode (I passed out) and resulted in my being taken to the Emergency Room. The Neuro who saw me before saw me again and did another THOROUGH neurological exam and came to the same conclusion. However, he ordered an MRI, EEG, EMG and an EKG...it was a testing hell. After 1 day in the hospital, all these tests came back normal but the jerking caused by the medication continued. He referred me to another Neuro that did a sleep study and ANOTHER THOROUGH neuro examination. Sleep study and examinations were of course, normal.

To make a long story short, the first half of 1999 was horrible. I thought I was dying and not until 2000 did things get back to normal and I just lived with the twitching.

Well, after turning 40 in October I've seemed to twitch more, but in reality I think I'm noticing it more. Shortly before Valentines day, I noticed an irritating waxing/waning twitch in my left tricep plus another less severe one in my right quadricep in my leg.

I'm obsessing again. Not even 5 years ago, I went through this, and it feels like it is coming on again. I visited my doctor, and he straight out said "What are the odds, that you have ALS, after such incredible testing you went through not too long ago? What are the odds of you having a self-fullfilling prophecy? I can tell by looking at you, that you don't have it, it is anxiety and they are benign."

Well, I'm half convinced, but I could really use some help. Now, I know, the rational part of my mind has done the math. The odds are super slim. Plus, I have no weakness, I do taekwondo, balance is fine, etc.

After all the testing, not too long ago, and considering my history, I shouldn't worry. But I do. When that happens, twitches are worse, hot spots stay longer.

Suggestions appreciated and encouraged. Sorry for the long post, but I had to vent, and this seemed the place to do it.

Thanks much and God bless.

BTS
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Postby thetwitchkid on March 12th, 2004, 1:30 pm

BTS:

Sorry you are so stressed but let me make you feel better.

READ THIS OVER AND OVER :arrow: "he straight out said "What are the odds, that you have ALS, after such incredible testing you went through not too long ago? What are the odds of you having a self-fullfilling prophecy? I can tell by looking at you, that you don't have it, it is anxiety and they are benign."

Given the tests, you would be a medical miracle if you had anything else but stress.

It's amazing that we BFS's go through incredibly sophisticated tests, are seen by extremely competent and educated physicians and neuro's and yet we cannot except the finding that we have a BENIGN condition.

See.. you're fine. :D
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Postby uber on March 12th, 2004, 1:34 pm

Well there is no way that this is ALS...its not even BFS, we are all here to offer out support but really you are at the wrong forums. You should try to get involved with forums more focussed on Anxiety Problems.

I know exactly what you mean about the anti-depressents causing nocturnal myoclonus, they did that to me too, I even got sleep paralysis from 1 drug I was prescribed.
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Postby scaredtom on March 12th, 2004, 1:49 pm

Hi BTS,

I think we all understand where you're coming from. When you're in the middle of health anxiety it is all-consuming. I've been there. My worries have taken me to serious heart problems, cancer, brain tumors, etc. It's crazy - I'm sitting here laughing at these past worries, but in the past, I sure wasn't laughing. When I had these worries, it was stress that was actually causing a variety of pains that made me think that I had these problems. Then the anxiety of thinking I had the problem actually made the pain even greater. It was a snowball effect situation. I think this is called somatization and prior posts on this board have discussed this. (Probably a fancy word for hypochondia!) Anyway, now it's BFS for me too and it started over 18 months ago in the middle of another horribly stressful situation. Now the BFS in itself is the cause of some stress and letting go of this is most difficult, even with the negative neuro exam and negative emg/ncs. I encourage you to get help from this forum. Whatever is the focal point of your anxiety (bfs maybe) is what you need help with. As others have said, just try and hang on to the negative diagnoses you've gotten from the doc's. Hang in there and try and enjoy the weekend! Try to divert your attention to something besides yourself. I know this is difficult.

Tom
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Postby Dale on March 12th, 2004, 1:54 pm

That's right....you won't find anyone here who can relate to Anxiety Problems!

BTS: spend some time reading posts on this site about other people's experiences. I'm sure it will help you feel much better. Many of us have been in the same boat.

Dale

BTW, I also notice a flare-up in my symptoms just b4 Valentine's Day. I blame it on the women. They put far too much pressure on men around that time of year!
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Postby thetwitchkid on March 12th, 2004, 2:55 pm

Uh oh Dale... The ladies will not like that :wink:
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Postby Dale on March 12th, 2004, 3:30 pm

I'm sure the ladies know I'm just kidding!

Valentine's is a pretty important day at our house - it's great to be married.

Now for some serious holiday cheer - St. Patrick's Day is right around the corner. I've booked next Wed. off to enjoy the day. Anyone else doing the same?

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Postby BTS on March 12th, 2004, 4:05 pm

Just wanted to thank you all for your posts. I must say I was quite surprised to see them all so quickly and I really do appreciate it. :D

In regards to a comment earlier, I think the twitches are kind of the root of my anxiety problem. I then worry, and they get worse, worry some more, and the cycle continues. It's like my rational mind is at odds with my irrational mind--my rational mind says you had a battery of tests less than 5 years ago that said completely normal, so lay off. My irrational mind says the worst could come true, and that somehow I developed the dreaded disease in that short period of time. My irrational mind also says that even though you have no other symptoms but twitches, you still have it.

I know, it's silly, but that is what I struggle with. That is why you all have helped me a great deal already. Often, someone looking from the outside can tell you that "your smoking your socks, stop worrying :wink:

Have a great weekend.

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Postby Jenn311 on March 12th, 2004, 4:29 pm

Many people find that reading about ALS exacerbates their twitching. So wipe those thoughts from your mind. You don't have it, chances are good that you never will. Try heartily to think of something else whenever you start to think about your twitching and/or other health anxieties.

Welcome to BFS world.

J :wink:
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Postby karen_marietta on March 14th, 2004, 2:34 am

Hi BTS,

There are times when we all need reassurance to confirm that our worst fears have not been realized. Sometimes, we just need someone else's hand to grip...

Grip away, there are many strong hands here for you to clench...ouch!....not so hard...geez! I did not say to wrench it from my wrist...I said to clench it!

Hugs...it won't be easy, but you will get past this...your feelings are shared by many!


More hugs and prayers,
Karen
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Postby BTS on March 14th, 2004, 5:01 pm

Thank you Karen :)

I appreciate your words of encouragement...this board has DEFINITELY helped me.

Like I said earlier, what is rough for me now is the time that has elapsed since my last testing. It is silly though, for me to think that way, for that would mean I'd be getting EMG's every two to three years for the rest of my life, and that would do way more harm than good.

I think what is best for me is to accept the diagnosis I got back in late 1999, and continue to my best to relax, take it easy, and seek reassurance when/where I'm able.

I will most likely continue to use you kind folks as a shoulder to lean on, but like most things in life, the final arbitor of me getting out of this somewhat viscious cycle is to find it within me to stop the worrying.

Again, my heart-felt thanks to you all, and it has been my pleasure meeting you!

With thanks,
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Postby Arron on March 15th, 2004, 11:59 am

As you already know, Paxil can cause twitching and convulsive like body movements. I wa son it too for a short week or so and had to quite because I was a zombie with horrible body jerks.

My wife's co-worker has been on Paxil for years and years and you'd never even know it UNTIL the day he quit taking it cold turkey! You should have seen this poor guy (in his 50's) jolting, jerking and wincing. My wife asked him if he was OK, and he told her he quit taking his Paxil. She knew right away to get him to the hospital and get him back on it because you aren't supposed to just stop taking it like that, or it will do all kinds of nasty things to your system.

I read your story and I too see absolutely NOTHING that even remotely resembles ALS, what so ever. I do see everything that resembles BFS, or at least short episodes of BFS. We can all relate to your feelings, so tust us, we KNOW how you feel. This isn't our first day either :-) that's why we're all here. Hang in there, you have POSITIVE tests to prove you absolutely do NOT have ALS, or anythig like it. EMG's and the like don't lie.
You have no reason to be worried about anything like ALS, so go be with your family and kids, and keep your chin-up, you'll be fine :-)
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