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Postby Dale on December 13th, 2002, 4:39 pm

My name is Dale. I am a 36 year-old white male. My symptoms started at the end of September 2002. I was in bed one evening & noticed my left index finger was twitching. It only lasted a few seconds, but it sure got my attention. Over the next few weeks, that same finger twitched about a dozen times. Nothing major & again only lasting a few seconds. They occurred at varying times – during activity & during rest, but mostly during rest.

This is where the “fun” starts…

Last summer, I read an article in Readers Digest about Michael J. Fox & his battle with Parkinson’s. I remembered that his first symptom was a twitch in his pinky finger.

I started looking up PD on the internet & before long I was absolutely convinced that I had PD. I made an appointment with my GP. We talked & he said the chances of me having PD were low. I had some blood work done to check my B-12 & thyroid. All came back negative.

Fast forward a few weeks to mid October. I am now experiencing vibrations in my left hand, specifically my thumb & index finger. Also have the same vibration feeling in my left foot & occasionally my right foot.

My GP makes an appointment with a Neurologist. It’s in early November – about 3 weeks away. By now I am doing every kind of finger tapping, wrist twisting, hand writing test imaginable. I am absolutely convinced that I have PD. I’m married to a beautiful wife & have 2 young children. I decide I should start to make a video of myself for the kids so they can see Dad before he was in a wheelchair. I start making plans to sell our 2-storey home & move to a bungalow. I call my brother over & make him promise to take my son to hockey practice when I can no longer drive. I WAS ABSOLUTELY DRIVING MYSELF CRAZY.

The weird thing is I’ve never been paranoid. I’ve always had great health. I lift weights regularly, play sports & eat great – no smoking, very little drinking, etc. My wife was really loosing patience with me. She works in the medical profession & kept telling me that you can’t self-diagnose yourself based on one symptom. Bottom-line, you shouldn’t be diagnosing yourself at all – that’s what the Doctor’s are for.

Made another appointment with my GP (this is about the 10th appointment in 3 weeks – I’ve seen my Dr. more times in the past few weeks than in the past 10years combined!) to discuss my anxiety. He prescribes Paxil. I take that for 2 days & REALLY start feeling terrible. I check out the side-effects & go off it immediately.

It’s now the 3rd week of October & I get a call from the Neurologist’s office. They have a cancellation. My wife & I see him the next day. I get into the office & explain my symptoms to him. He looks at my wife & asks if she has noticed any changes in me. Other than my obsessive behaviour & total preoccupation with having PD, she says no. He asks me to take off my shoes & socks & puts me through a series of tests. At the end, he sits down with my wife & I and says that he sees absolutely no signs of PD, that I have a benign twitch. I ask him if he’s sure, he nods his head & I start bawling like a baby.

You would think everything would now be ok, right? Wrong.

About a week later, my left forearm starts twitching – I’ve never twitched there before. It’s twitching so hard that it actually makes my left hand shake. I become completely crazy again. I make another appointment with my GP who sets up an appointment for an EMG the next week. I become so fixated on this that while at work I spend an hour easily each day on the can just sitting there watching for my hand to move. Pathetic, eh?

I go for the EMG. The Doctor asks me a few questions about my symptoms & puts me through a series of reflex, strength and co-ordination tests. He tells me he sees nothing wrong. He says that I have the same twitches that he’s seen in many patients & that an EMG is not warranted. Again, I’m relieved & go home to tell my family the good news.

It’s now mid December & I’m twitching like crazy. My left eyelid twitches off and on for a week. My calves are twitching, my arms, my upper lip. I’m also starting to get muscle cramps. They come and go. Sometimes it’s my left bicep, an hour or two later it’s my right forearm (I’ve experienced few little twitching in my right arm), a few hours later it’s in my calves. The cramps are not debilitating – they are more like having a mild headache. You can still function, but you feel kinda crappy.

Am I worried about ALS. Yes, although thank God I haven’t experienced any weakness yet. The positive thing about this is that I’m having great work-outs. I want to keep lifting heavier & heavier weight. I can still walk on my heels & toes.

Because my symptoms have changed since my first appointment with the Neurologist, I’ve made a follow-up for the 24th of December. I also called the Dr’s office where I went for my EMG & insisted on having the actual test done. That’s scheduled for January 8th of next year.

This site has been very helpful to me. Especially the article on BFS which was written my Arron. I’ve probably read it a hundred times.

I’m sure everything is going to be ok. I’ll keep everyone posted. Thanks for listening.

Dale
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Postby Joanne on December 13th, 2002, 7:56 pm

Dale,
Thanks for sharing your story...I know the feeling about freaking out over PD I did the same thing....even posted about it. I started with a finger twitch 17 mths ago and have since twitched every place imaginable and some you couldn't imagine :)
It can consume your life but it sounds like you are doing the right thing get it all checked out and get piece of mind.....I think after having this for 17mths i am just starting to accept it....i still freak out over different sx but what i notice for me with this and by the way i have been dx with benign cramping fasciculation syndrome....which means i cramp along with my twitching ...which sound like what you described...anyway i have noticed that mine comes in cycles and some sx stay for awhile then leave and another appears and then they start all over again....like going full circle.
Hang in there, your not alone. Good Luck
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Postby tlotoxl on December 14th, 2002, 11:26 am

You're from Ottawa? I was born in Wakefield, Quebec and lived in Ottawa for around eight years. Your story sounds very familiar to me, Dale. I worried about Parkinson's at first, too, when I first started experiencing symptoms over two years ago and only started worrying about ALS this summer after my first visit to the doctor about the twitching when he brought it up (previously I had complained about pins and needles instead) -- and then they made me wait a week for the appointment with the neuro. My life was flashing in front of my eyes too -- I have no kids but I was thinking if I should do my best to convince my girlfriend to have one (somewhat irresponsibly, but natural, I guess ;) ) Oh, it was a very bad week. A few reflex and strength tests later and the neuro told me it was benign. It's been over two years now and I guess things are pretty much the same as ever. I twitch less than I did this summer (and it doesn't keep my up at night), but I still twitch a fair bit and late at night, by myself, I often get to worrying.

Well, I hope things go well for you, Dale. It's starting to get cold now, even in southern Japan, and I get to thinking about the Canal. Have a good Ottawa winter.
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Postby Arron on December 14th, 2002, 10:10 pm

Dale buddy, our stories sound SO much alike it is scary, with the single twitch in one finger for a while, then the Parkinson's scare, the anxiety, the 20 doctor visits in one month, the dreaded Paxil, the "I'm going to make-out my will, sell all of my stuff, call my friends and family to make sure they will help my wife and kid once I've shribbled-up" and so on...

Please come back and post your EMG results and other experiences you have. It only helps the MANY other's that come here for support and relief that there are other things out there with twitching, other than ALS or Parkinson's. Thanks again for your GREAT post!
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Postby jblack on December 15th, 2002, 2:09 am

My worries started with Parkinson's too, for a number of reasons. Just so you know, fasciculations are not indicative of Parkinson's. I've read posts from neurologists saying so. Tremor is something else - it's certainly possible that someone could describe a tremor when it manifests in a finger as a "twitch", but it is NOT a muscle fasciculation. So Dale, now that you've been experiencing fascics (not tremor) you can at LEAST put PD out of your mind.

Of course, the day I managed to put it out of my mind was the day I started worrying about ALS. It's just so typical of anxious people like us -- find the disease to fit the symptom, and fixate on it. Dale -- you're fine, your symptoms describe BFS aggravated by anxiety to a T. That's what you're struggling with, so try to concentrate on making that better, and you'll be amazed at how the more serious fears take care of themselves!
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Postby Annie on December 15th, 2002, 1:09 pm

Dale, thanks for posting your story. I almost cried, your story was so similar to mine. I hope it will help you to hear that for me, this has been going on for 8 months, and I am 100% fine. Exactly the same story: started in my left index finger. Twitch, twitch. Then in my forearm. Then, all over - legs, instep, buttocks, hamstring, chest wall, you name it. I too, had read about MJF in People Magazine and was convinced that I had PD. My GP told me I didn't have PD, so then I started reading medical books and the Internet and discovered ALS, and at that point I wished it WAS PD, because I was convinced that I was going to die from a horrible wasting disease! I actually DID rewrite my will!!! (Maybe not a bad thing to do, but definitely the wrong reason). Finally I went to a neurologist who checked me out thoroughly and told me I had... benign fasciculations! I still had major doubts and anxiety until I discovered this site and found to my amazement that there were many other people with the same weird symptoms I had. I'm still twitching. My left index finger still has a mind of its own. But you know what? No pain, no disability, no weakness. I am swimming, biking, lifting weights, doing my job, and enjoying my family. My friend, believe your doctors. This is a benign condition. Go out and enjoy your life. Thanks for sharing.
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