No Clue on BFS/BCFS Causes

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DrewPanncys

Well-known member
Niteangel: No one really knows what causes BFS/BCFS. Some potential causal factors include over-exercise or a preceding viral illness (cold or flu). There is some belief it is related to potassium channels in the nerve pathways and this could be why magesium supplements have been helpful to some. However, you probably already see that anxiety plays a big role in the suffering that goes along with it. You have been given excellent news! YOU DO NOT HAVE A DEADLY MOTOR NEURON DISEASE you have a benign syndrome that is made worse in its symptoms by allowing anxiety to cause doubt in your doctor's opinion and to inspire internet searches and so forth in an attempt to understand what your body is doing. No need. Just eat right, make sure you are getting plenty of sleep, take a daily vitamin and maybe some additional magnesium, relax, indulge in a hobby or two, get out and socialize, have faith and enjoy your life with your body that is relatively well by medical standards. Choose to be reassured by your physician's assessment and if you find this to be impossible, seek psychological help because it may indeed be an anxiety disorder that is at the root of your concerns.
 
Hello Niteangel!

I am new to this site also and my symptoms are very similair to yours!

Mine started with a wicked eyelid twitch that stayed for a month or two and then overnight I developed the twitch everywhere! I suffer from anxiety quite bad and my symptoms are so much worse when I am upset.

As mentioned try to relax, I take a good long walk or I go to the gym. I hope you get some reassurance from this site as I have. This BFS is pretty common.

Take care!
Sandra
39 yo twitcher
Australia
 
Thanks for the replies! :)

Nancy, you are so right about not doubting my doctor, but that's hard to do when I've turned into a hypochondriac. I have really been doing that even after I went to see him. Especially since he didn't refer me to anyone else or even seem concerned enough to do an exam.

He had done bloodwork and called me back today with that. Not sure what all he checked, but told me specifically that my heart, liver, kidneys, magnesium, sodium, glucose, and some other things I can't remember are all normal.

He's moderately young for any doc I've had (late 40's) and he is a hoot.
I told him that over the weekend I noticed that one of my calves (the left weak side) was smaller than the other, so I measured it and it was about 1/4 of an inch smaller than the right. I asked if I should be concerned. He said "Really?" and I was thinking OMG and said yes, really! He asked if I'd measured my thigh. By now I was getting freaked out and said no, but I will. He said "Yeah, go ahead - it's going to be smaller, too. Almost everyone has a dominate side of the body that is larger than the other". haha Mr. MD, very funny. He told me to take my anti-depressents and stop doing searches for ALS. :mad:

I'm trying.
 
Dearest Niteangel: If you think you are a hypochondriac, then by definition you need a psychologist or other psychotherapist to help you. It will not necessarily get better on its own. There is no need for you to suffer this alone. You can call and talk briefly with potential therapists to see who you think you might work well together with or get a referral from a friend or referral agency.
 
Your Dr isn't worried so neither should you be, end of story.

This was my attitude 12 years ago and it's never let me down. A simple straightforward effective approach to dealing with this condition from day one. Try it and you'll bypass the worries suffered by many on here.
 
Now Nancy, you're not prejudiced towards psychologists because you are one, now are you? ;) That's twice you recommended one here for niteangel2 already. Since you're are a psychologist with BFS did you see another psychologist, too?

I had all over body fasciculations that came in one horrendous storm that scared me half to death. They got worse following blood work and get much worse when I'm sick (like I was this weekend). They started following some viral illnesses and stress this spring, but have never been as bad since. They have never gone away either though and I am being treated by my neurologist with neurontin to help control the cramping that I get. It was scary at first, but then it got easier to live with and I am not afraid anymore. Just cranky, like Steve, but he's got 12 years of BFS/BCFS/PNH on me, so I guess we'll have to cut him a break on that one. Besides, he's right.

Hope that helps,
Sir_Trouserz
 
Well Sir_Trouserz, for the treatment of a psychological condition (Hypochondria) I can't think of a better professional for Niteangel to see. I'm responding to her own diagnosis of which she may be quite correct. Who knows herself better?

Meanwhile, I am sure that you noticed that I did include some other recommendations for Niteangel in my first post.

And to answer your question, over the years I have indeed made use of psychotherapy, there is no shame in it for me and I found it to be a great help.
 
Well, her hypochondria happened after the symptoms started though Nancy. Severe and sudden neurological symptoms can do that to you I think. Some of us may suffer from post-traumatic stress syndrome actually (my pet theory as a nonspecialist) because of the intense fear and anxiety the symptoms cause. You may be quite right that she wants and needs the psychological help.

I only met with my psychologist once and she told me to get a new neurologist because he tried to tell me that my symptoms were due to anxiety and I knew they were not. She was very helpful that way and I am very grateful for her because now I am having my medical symptoms treated by a new neurologist and that has helped me a great deal. I know you mean well Nancy, but you did push the psychological help a bit hard, so you have to be prepared to be heckled a little bit on this forum for that.

I hope everyone finds whatever helps them learn to deal and cope with this syndrome because it can be quite challenging.

Cheers,
Sir_Trouserz
 
Well, if I offended Niteangel with my "pushing" I'm sure she will let me know. If I offended YOU, Sir_Trouserz, then accept my apologies. :oops:
 
I'm not offended at all. I don't know if I need to talk to someone or not, but at this point I think I have enough going on and am not really keen on having someone start picking my brain. Lord only knows what else they would find in there! :eek: But yeah, sure feeling like a hypochondriac in this particular situation - especially since it's hard to accept my doctor's laid back attitude when I feel that it's the end of the world. lol

I'm curious - for other twitches: Did your twitches just start all in one day like mine did, or did you start twitching in one area and it spread? Do you twitch constantly or just for a few minutes after you lay or sit down? I twitch for about 5 minutes or so and then it stops for the most part.

Do you guys also feel a 'perceived' weakness in one side of your body or the other?
 
I thought a hypochondriac was someone who had imaginary symptoms not physical ones. I also got the impression that Niteangel's anxiety/hyrochondria was post BFS given that she used the term turning. If this is correct, then 3 weeks hardly qualifies as hypochondria.

I think what people should be aware of is the fact that this site is just a snapshot of people with BFS, and while most if not all have anxiety issues, this gives the impression that anxiety is a major factor. While it might be a hot topic on here that doesn't make it so, and I can assure you for many it isn't worth a second thought.

As I understand it anxiety is psychological and it has been suggested therefore the brain is the origin of the signals that are producing the twitches etc. The problem I have with this is that the spontaneous signals that result in the conditions known as BFS, BCFS and NMT, originate in the PNS and not the CNS. Therefore anxiety influencing the brain causing it to produce random signals doesn't appear to fit the model.

I don't think anyone would argue that anxiety doesn't affect the symptoms, but it's a secondary factor, not a primary cause in my opinion.
 
You didn't offend me at all Nancy. The problem for a number of us however has been that since neurologists don't take this condition very seriously, since they deal with such other more serious condition on a regular basis, they too often look to patient anxiety as an easily explainable cause and are very dismissive of us. That's what I take issue with. I knew I was sick with something, but my old neuro wanted to write me off the minute I walked in the door and he was unhelpful, to say the least. I know everyone is sick of hearing about it, but the treatment we get varies so much by neurologist that it's nonsensical.

If anyone needs psychological help to deal with this condition they should by all means get it. My psychologist helped me enormously to sort through what was going on. No one here is free of general heckling however Nancy and I've found out from experience that this group will correct you, and fast, if they think you are mistaken or something of that nature.

My twitching came on pretty quick niteangel2. I was very sick last winter and couldn't shake it off. I don't think it all happened in one day, but it was a very short period of time and it was head to toe fasciculations. I have a perceived weakness on my left side, although my EMG was squeaky clean. This condition varies tremendously by person, so don't expect your symptoms to be the same as anyone else’s. Don't expect your symptoms to stay the same either from day to day either. Some people only have twitching while others (lucky me) have cramping, too. Over time I'm sure your symptoms will probably diminish some, especially if you follow Nancy's advise on lifestyle changes that assist with that, but they do come and go during times of stress and illness, too.

That's my take on it anyway. I hope that helps. Steve has always been my best source of information about this syndrome as well so I always trust his advise.

Take Care,
Sir_Trouserz
 
Thought I would jump in here. Hypochondria is a condition that deals with ills that are not physical. Now that being said that does NOT mean in any way shape or form that the person is not EXPERIENCING them. I think this is more a case of Health Anxiety or even a mild OCD. HOWEVER, this argument becomes chicken or the egg and in the end it really doesn't matter if the anxiety came first and then the phyicial condition or vice versa.

What you are concerned about niteangel is a very real condition called BFS or BFCS if you suffer from the cramping as well. It can be made worse by anxiety and there is not one post on this site that will not back that up. The anxiety comes from usually googling symptoms but it can also occur from the randomness of the symptoms as well as it's overall clincial course. I have posted eons ago it seems that I do believe that there is also some correlation to the anxiety and possibly the nerve hyperirritability. Again it doesn't much matter the why. If you need something to help you calm yourself, then take it. If you can do without it then that is just as well. What you need to realize is that all of this WILL settle and you will feel better whether the symptoms continue or not. Those on this site with Axiety Disorders will definitely need some intervention whether counseling, medication or therapy and that is fine too.
Kit
 
Hi Niteangel2.

To answer your questions:

1. The genesis and randomness of twitching has varied from one member on this board to another. With that said, frequency and severity one way or the other do not mean anything. I have read stories of people twitching 24/7, some with hot spots, and occasional pops here and there. As for how it all started, there are some people where single twitches in certain areas that then become widespread, there are others where it hits one day like a storm, and then there are others where the twitches came after another symptom like cramps. They all might have different stories, but they are all benign. My story started over three years ago with a perceived weakness and some numbness one month before the twitches started.

2. The perceived weakness can be body wide or located to just one area. Again, these stories are all over the board.

Relax your mind, you are fine. Too much anxiety just makes matters worse. Remember, until someone tells us that worry is an effective treatment...don't go there!
 
Actually, Sir_Trouserz, my neuro is quite aware of the hypothesis that autoimmune diease could be a possible etiology for BFS. When I first saw him, he reveiwed all the usual suspects. Today I asked him about his own clinical experiences with patients and this was his response. What he offered up is consistent with one of the risk factors I have seen referenced on this forum's sticky notes and elsewhere, so I do not imagine him so ill-informed or lazy in his study habits as it might be convenient for others to do. As I said in my post, I doubted it would explain everyone here on this website but there will be others who will find it does apply to them and that would be a good thing, I'd imagine.

I welcome the reserach being done but from what I have read of the articles so far, there is nothing conclusive either in understanding the mechanisms behind the syndrome, its course or its treatment. As is the nature of research, hypotheses are tested and built upon. There are almost always different groups challenging other groups about their findings. If you spend any time in scientific journals, the arguments there can sound much like this forum. :cool: Meanwhile, it seems a bit premature to assert anything about BFS and its causes and treatment that could beat the probability of 'heads" on a coin flip. That does not mean there has been no progress, it just means we should all be careful not to state in such absolute terms that this or that is or is not involved in BFS/BCFS. The data do not support it as yet.

And so, we are all left to find our "back" to wellness. The road back might be a bit different for each of us given the resources we have and the choices we make but no less valid for one than the other.

To all of you, peace and best wishes to reclaiming your wellness and peace of mind.
 
Ok first of all JerkyBoy, if you are coming to defense of Nancy, that is fine, but she seems to be quite capable of fighting her own battles ;) But I will take some umbrage with your opinion of Sir_Trouserz. She has done quite a bit of investigating and questioning and has weighed in on both sides of this issue. Sir_Trouserz, I apologize for attributing the neuros response to you as somehow I missed that it was Nancy's post. So Nancy, although I appreciate your neuros response, as a physician who also suffers from this I am less inclined to feel that this is just feeling some twitches more than usual, as I said previously my issue was less with twitching and more associated with other nerve sensations. I will however appreciate his opinion. I do happen to believe quite deeply in autoimmune response as well as inflammatory responses and am a firm believer in this for most conditions. The anxiety and psychological response will be different for everyone and I do not believe that Sir_Trouserz is falling on one side or the other as the cause or the cure just simply providing some thoughts. This is truly the chicken or the egg and ultimately it does not matter what comes first as long as the result is the same, namely that you prioritize this issue and give it the appropriate place in the heirarchy of your life. So medication, no medication, medication and psychotherapy, none of the above, counseling with a priest, talking to friends, communing with nature, natural remedies, yoga, boinking (that is for you Basso). Ultimately there is no need to pick a side or to get testy. This condition has enough emotion all on its own to add anymore.
Best to ALL of you!
Kit
 
OK, one more thing. I am very sorry Jerkboy, if that is your real name. There are a number of us who needed a doctors care and didn't get it because, I think, we were anxious about our symptoms. That does bother me and make me angry, but I will try to make a more pleasant delivery next time to be more soothing to the palette since everyone here is already a little anxious.
Sincerely,
Sir_Trouserz Jerkgirl ;)
 
Of course that's not my real name, thank God. Most here don't use their real names from what I've seen.

Why would you ask that? You're not trying to cause trouble are you? I know you wouldn't do that. ;)
 
Hi,
Just joined this site. Having constant twitches for past 1 month on almost every part of the body, except face. For past 2-3 days I have noticed that my left eye is flickering a little bit :confused: . All my blood tests, neck mri and EEG test have come out normal.
I have couple of questions:
1)Does the affected area hurts after twitching? - Mine does when the twitching happens in shoulder or upper arm area.
2) I don't feel any weakness or loss in strength , but have noticed that my upper arm hurts if I do any repetitive action, like shaving or hammering a nail. Also I can easily lift something heavy, but do get the pain after that for couple or minutes. (before all this twitching started, I never had this problem) - Is it normal in benign twitches or should I be concerned? Will it be considered as muscle weakness?
3)Sometimes I get muscle spasm or crawling like sensation in legs instead of twitching - are they also related to bfs?

HELP :oops:

Thanks in advance
 

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