Dale's Story

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Dale's Story

Postby Arron on December 14th, 2002, 10:25 pm

This is another great post that was in another topic area, and I didn't want it to get lost.

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
Arron
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Postby DogBone on January 6th, 2003, 5:06 pm

Dale,

I sat and read your post and I am sorry to say I just busted out laughing. I laughed because I know exactly what you are going through. It is so similar that it is funny. BTW - ask them about the mild headache type cramping. My neuro, head of 1 of 17 ALS clinics in the nation, said that those types of pains are not cramps unless the muscle hardens and becomes tight. You can usually see and feel it he said. Ask you neuro if you are really having cramps. I doubt you are.

Also - I would bet some money on the fact you have a clean EMG. Few hundred bucks anyone?? Actually, no one on this site would be that crazy because we all know very well the signs of an overactive mind. Good luck and keep us posted.

BTW - You realize how low your chances for ALS are? 2 of 100,000 (high estimate) get ALS, of those 80% are from 40-70, that means you have 1 of 250,000 by just your age. Finally, you are presenting with twitching first which is estimated at about 7% of all cases, so now you are at 7 of 25 million. Figure, there are 275 million in the US. So, in the US there will be about 77 people present with your symptoms/age. Realize, that this is not per year, but rather of all the people alive today in the US (including babies), about 77 will present like you. That 77 number will slowly be whittled away until everyone alive today dies and the population is replenished and then we will start with another 77. I do not know if that was confusing of not -- but in any case -- It does make a good case for my bet on your clean EMG. Keep us posted.
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