newbie fasciculator seeks reassurance

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newbie fasciculator seeks reassurance

Postby dwl99 on September 22nd, 2002, 5:12 am

Hi,

I'm fairly sure that my symptoms are due to BFS but would like to run them by other members of the forum. I'm from the UK but I don't think BFS has been invented here yet.

I started noticing odd twitches 2 months ago in various sites of my body every few hours - arms, legs, chest wall etc. As the weeks progressed, these became more noticeable and they are now coming every few seconds. In the last few days, both calves have been "buzzing" almost constantly. Most of my symptoms have localised to both calves, and there are almost constant fasciculations visible to the naked eye, not all of which I can feel. The fasciculations are sometimes worse after coffee.

I also developed a bumping noise in one ear, which I presume is due to fasciculation of my middle ear muscles.

I have no weakness or difficulty speaking/swallowing. In the last day or two, I have noticed mild cramp in one calf which comes on with walking and goes away after resting.

I saw a neurologist a couple of days ago, who examined me & said that he thought MND/ALS was extremely unlikely but if I was sufficiently worried, I could have an EMG.

I'm obviously still concerned about the possibility of MND/ALS and am sort of sitting about waiting for new symptoms to develop. Do my symptoms (esp. the cramps) sound like the sort of thing you would get with BFS?

Thanks a lot.
dwl99
 

Postby Guest on September 22nd, 2002, 10:50 am

You have very typical BFS symptoms. There isn't anything in your description that sounds out of line for a typical case of BFS. Even the ear thumping - I've had the exact same thing. I'd get the EMG though. Just for your peace of mind. Many people let the fear of ALS ruin a year or so of their lives. Remember this (info from one of the major ALS clinics in the US), once fasics start, a clean EMG always means you don't have ALS.
The less you worry about them, the less frequent they will be. Welcome to the club!
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Postby Paranoid on September 22nd, 2002, 1:06 pm

I too have your symptoms and am waiting to see a neuro. It is almost the exact same. I started in June, mostly calves, spread to entire body, now back mostly in my calves esp the right one. Does one of your legs bother you more than the other? Also when you felt Weakness was it on the inside of your leg calf muscle. Mine always seems "spongey" and slightly weak yet I can still walk 2-4 miles a day? You probablly feel as I do. A clean EMG would be great, but it is the waiting for one that is hell.
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Postby dwl on September 22nd, 2002, 2:34 pm

My symptoms are pretty much symmetrical, but I don't know how much to read into that. I've found that there is a great temptation to try to interpret even the tiniest detail & blow it out of all proportion.

I'm guessing that you're from the UK - if so, have you thought about asking your GP for a private referral? You would probably get seen next week and it would only be a hundred quid or so. That's what I did anyway.
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Postby paranoid on September 22nd, 2002, 5:36 pm

No, Im from Canada. It is nice having your health care paid for but the waiting time is tremendous. This appt for me has taken 3 months and lord knows how long after the initial visit I will have to wait for further testing. Its the waiting that kills... that and the fact that my mind keeps playing tricks on me (at least I hope it is just my mind.) Im pretty sure my right leg feel weak. Ive heard the neuro can tell a lot from the initial visit, What exactly do they do?
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Postby dwl on September 23rd, 2002, 8:35 am

The neurologist asked me about my symptoms & general health, then examined me all over for fasciculations. Next, he checked my reflexes. As you say, they have a pretty good idea whether it is or isn't ALS/MND when you are seen. I've gone ahead & booked an EMG (hopefully) for reassurance.

I would still definitely think about getting seen privately - in my case it was well worth the money to avoid months of worrying.

Good luck.
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