Introduction.... and a couple of Questions

This forum is for posting your personal experiences with BFS: symptoms, doctor visits, fears, etc.

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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Introduction.... and a couple of Questions

Postby jamesm on January 14th, 2005, 2:25 pm

Hi everyone,

I'm James, 25, and have been fasciculating since April 2004. Diagnosed with BFS in September, after EMG, clinical exam and blood tests found to be normal. Calfs constantly twitch, with every other body part going occasionally. Just wanted to ask:

1. To those of you who twitch in the calfs and thighs, does it become more intense/frequent after, say, walking for 20 minutes and then sitting down?

2.I also developed a very slight tremor 2 weeks after fascics started and often my fingers/thumbs will just suddenly flex or flinch. I think this could be myoclonus. Does anyone else get these symptoms?

3. For 10 days before my fascics started I was taking creatine monohydrate for the gym. Does anyone else think their BFS began because of something they had taken previously?

Cheers everyone

PS. I can't believe its taken me 8 months to find this forum, most of which has been spent thinking I'm a walking dead man! :)
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Postby amy_twitch on January 14th, 2005, 2:43 pm

Welcome James---Like you, I didn't find this board til at least six months after I started twitching.

Welcome to the BFS club,and have fun reading all the posts. There have been tons of discussions as to what causes this phenomenon. Seems like there might be different causes for everyone--and for the vast majority of us, we just don't know, we can only speculate.

There have been discussions about dietary supplements and exercise regimens preceeding BFS....but for the majority of us, those are not links to our symptom on-set.

I wanted to address the tremor you brought up. After about six months into my twitching--and when I was at my most anxious over my health (you know how that feels), I had a tremor in my left hand for about two weeks. Every time I'd go to type, my hand would shake. It passed, fortunately. There are quite a few people here who have experiences with essential tremors. They seem to be fairly common--especially when people are experiencing high anxiety.

I hope you feel much more relaxed after finding this board---it certainly helped me truly believe that my condition is benign---nothing else.

Cheers!
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Postby jamesm on January 14th, 2005, 4:05 pm

Hi Amy,

Thanks for replying. To be honest I know my tremor isn't really that bad (I have a friend with benign essential tremor and it's so much worse!) but I suppose you just wonder if it's part of the whole symptom picture, or, like you say, down to anxiety. I think I know deep down that BFS is truly benign, but it still doesn't stop the occasional anxiety attack! Perhaps the longer I have it, the less I'll worry - I hope!

Thanks again
James
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Re: Introduction.... and a couple of Questions

Postby Ish on January 16th, 2005, 12:10 pm

You sound normal to me. I mean a normal BFSer.

1. lots of us find exercise increases twitching and soreness.

2. Some of us have tremors, I developed a very faint tremor in my left arm

3. re "Does anyone else think their BFS began because of something they had taken previously?" The new jocular example a conjectured trigger is "meat pie". Creatine? yes, come to think of it I was taking creatine around then ... protein powder too (another popular conjecture). I also changed my tooth paste, mouthwash, etc.

Me: twitching 1.5 years. 2/sec in calves 1/10 secs elsewhere; soreness, stiffness, buzzing, etc. Neuro exam at c. 1 year: normal; EMG: "normal except for fasciculations". Diagnosis: BFS.
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meat pie

Postby stevepaul on January 16th, 2005, 1:36 pm

Ish.

Honestly. It started directly after eating the pie, mind you, I had had a lot of beer the night before so maybe dehydration or chemicals come in to the equation, take you pick.

What I can say is that the muscles are twitching because they are receiving continuous signals to do so.

Regards Steve.
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Postby garym on January 16th, 2005, 11:34 pm

Steve,

The muscles are either receiving continuous signals to twitch or they are losing conduction of the electrical impulses at the cellular level.

Gary
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Postby stevepaul on January 17th, 2005, 6:17 am

Hi Gary.


Perhaps you can help me to gain a better understanding of the process that is going on regarding these impulses. I'm talking about the VGKC defect here, it was explained to me in a simplified form by Hart back in 2000 but I could do with in upgrade in the memory department. I'll give you my interpretation and would value your or anyone's feedback on any corrections that I should know about. I want to add an explaination as to what is happening on the new website and would like it to be accurate and in a simplified form.

When the nerve cells are working properly the cell is negatively charged on the inside and positively charged on the outside. When a signal comes along the sodium gates start to open to allow the flow of sodium into the cell/neuron which then starts to become positively charged. When a certain point is reached the neuron fires the electrical charge which then travels along and fires the next neuron and so on and so forth and this results in some form of muscle fiber activity. Shortly after the impulse is transmitted the sodium gates start to close and the potassium gates start to open to allow the cell to return to the resting state. Eventually both the sodium and potassium gates close. I know that other things like the cell membrane, sodium exchange pump, other chemicals and certain levels of milli-volts are involved but I want to keep this simplified.

Now, I've never had a full, simplified explanation as to what is happening with this VGKC defect but it seems to me that it is allowing the neuron to continually fire these impulses that are causing this constant muscular activity, which we experience. Maybe the NMT variant of PNH differs slightly to BFS but I believe the two are both caused by this autoimmune defect. Like I've said above I would welcome your understanding of this nerve cell process.

Take care Steve.
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Postby garym on January 17th, 2005, 9:58 am

Steve,

While your simplified analysis of the processes at work is impressive, and thoroughly educational, I can only repeat what has been told to me by one of my docs (not Hart, but a neuromuscular specialist none the less). I was told that the muscles aren't in every case receiving a signal to fire, but rather sometimes a loss of conduction between the cells causes a spontaneous release of activity. My doc pointed to potassium channel blockers as well, and you and I may indeed be talking about the same process, just using different terminology. But in the final analysis, I can't get past the fact that I was told that in my case, the muscle cells were losing conduction causing these spontaneous muscle firing in the form of twitches.

Someday, I would hope to know for sure which process is at work in my case. I've just about given up on trying to find the real cause because there are just to many variables amongst the sufferers of this condition. As Hart pointed out, not all have VGKC antibodies, and there are distinct differences on emg between PNH and BFS. I have true BFS based on my emg findings according to my doc. But i think that these differences should be noted and that we don't all get grouped under the same condition. If there are different processes at hand, I would like someone to continue to search for my answers, not group me with a condition with different origins.

Take care,

Gary
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Postby stevepaul on January 17th, 2005, 3:22 pm

Hello Gary and "ouch"

I was unaware of this other reason for muscular twitching, as I've not seen any reference to it before on the board, so thanks for the info.

I'm sorry but I can't help it if Hart is my Neuro and I use him as my reference. I don’t mean to sound as though anything that he or I say is absolute, but it is becoming obvious that with some people it is a source of irritation, this coupled to the fact that I'm not as skilled as others at trying to get my views across probably doesn’t help either. So I think it’s probably time to call it a day.

I wish you all the best for the future and I hope you find the answers you are looking for. Keep up the good work on the forum.

Best wishes Steve.
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