David's story

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Please use this forum to post give and recieve encoragement and reassurance from sharing the trials and triumphs you have faced.

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David's story

Postby dwl on October 6th, 2003, 2:54 pm

Pretty much a carbon copy of everyone else's stories, which I think is very reassuring. I'm a 41 year old who started twitching in July 2002. It started in my upper lip and hung around for a couple of weeks but I thought nothing of it. Over the next couple of months I started to notice odd twitches popping up in all 4 limbs and an occasional tongue twitch. I did the by now famous Google search on "muscle twitching symptom" and turned up page after page on als. Then my life sort of fell to bits. I couldn't eat, sleep or concentrate without thinking about how I had als. I worried about how I would miss seeing our new baby daughter growing up.

I saw a neuro after about 10 weeks of twitching and he said that based on his examination I did not have als but that he would not give me a 100% guarantee and offered me the chance to have an emg. This was completely normal and things settled down for a few weeks. Then I started to develop muscle pains & cramps together with perceived weakness afftecting my legs, tongue and hands. I felt as if I was tripping over my words and that my tongue was getting too weak to push food around my mouth. One of my legs felt rubbery. These symptoms felt very real and they came & went. Needless to say, at no time did I have any loss of function. Every time I picked up a coffee cup I was testing how strongly I was gripping it. I walked on my heels on a daily basis. I did push-ups, hopped on one leg, sprinted up stairs and walked for miles to try to check myself for weakness.

I worried that my first emg had been done "too soon" & saw another neuro in November 2002 who examined me and agreed 100% with the first neuro that I did not have als. Again, I calmed down for a few months.

In March of this year I started getting big twitches in my upper lip and tongue. This lasted for 3-4 months and when I showed my GP the twitches he arranged for neuro #2 to see me again. I had another normal neuro examination but he arranged for another emg which was normal (of course!).

So, I have bfs and not als.

I sincerely hope that these words can help someone else feel a bit better about their symptoms. I have certainly learned a lot from people like Arron and am immensely grateful to him and the other contributors to this site.

I think the most important things I have learned are:

1. Believe and trust in what your neuro tells you. They're not in the business of telling people they don't have als if there is a chance that they might. Doctors like to cover their a$$e$.

2. Don't believe everything you read on the web about anecdotal stories of people twitching for years and/or having normal emg's and then going on to develop als. Do believe reputable scientific information published in peer-reviewed journals. One of my worst periods was after someone posted on this site that they had gone on to develop als. This proved to be untrue.

3. Stay away from those scary als sites. If you don't your symptoms will feel a million times worse and you will be even surer that you "have" als.

4. Don't constantly check your strength. This alone will make you feel weak & just fuels the obsession that you have something wrong with you. If you had als you would notice that you were unable to do day-to-day stuff such as dressing, eating or walking.

5. Once you have a bfs diagnosis, move on. Get on with your life. You don't need to keep on reading medical websites (including this one) because you do not have als. This came close to ruining 15 months of my life - don't let it happen to you.

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Postby Jenn311 on October 6th, 2003, 3:13 pm

Great post and great advice Dave!

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Postby twitching man on October 7th, 2003, 9:48 am

Davd-I'm glad to hear you are fine. After reading this I feel like I looking in a mirror, the onlt difference is I'm 39 and I live across the pond. I am goining through the all the strength testing and I' going through the mouth thing right now. thanks for putting your story up and good luck.
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