One Year of Twitching - A Story

[Soupy27]

Exactly a year ago today I noticed a vibrating sensation in my right thigh, as though my mobile phone was going off. No mobile phone there, though, and when I got home, and Googled, a whole drama was unleashed that continues to this day. Within twenty four hours I was twitching in both calves, and they've been twitching more or less constantly ever since.Of course, the twitching didn't stop there. Within a few weeks it had also spread to my arches, and while calves and arches are my dominant twitchspots, I get random 'hitters' almost everywhere.I have no idea what caused my twitching, although I did undergo a rather traumatic withdrawal from benzodiazepines just a couple of months before the twitching started, and it's well known that withdrawal can cause fasciculations. For two months before I started twitching I had intense burning sensations in my left arm and both legs - the places, strangely enough, where I twitch most now. I saw a neurologist on account of the burning and came away with a 'clean bill of health'. I saw a different neurologist a few days after I started twitching, and again he deemed me free of any neurological condition apart from twitching.Two weeks after I began to twitch, I had an EMG, which was also 'clean'. The neuro-muscular consultant who did the EMG said that what I had was 'consistent with benign fasciculation syndrome' and sent me on my way.I have had a further two neuro clinicals since then - one in May, another in November. Both times I was 'cleared'.So how are things now, a year down the line? Well, I was hoping that the anxiety would have disappeared by now, but unfortunately that's not the case. While I have no discernible weakness, I do have muscle and joint pain, and this gives me cause for concern. My main issue is the mixed messages that I get about twitching in general.The twitching in my arches, for example, comes and goes. This surely must be a good sign? Yes, say some; not necessarily, say others. My twitching is largely confined to my calves. This surely must be a good sign? Yes, say some; not necessarily, say others. Some of my twitches are so severe, they actually lift my trousers. This surely must be a good sign? Yes, say some; not necessarily, say others. Then there are the reports - scarce though they may be - of people who twitch for a very long time before developing weakness. The question I always ask is, "If it can happen to them, how can I be sure it won't happen to me?" The guy who did my EMG, two weeks into twitching, said that if I wanted to have a second EMG, I should come back in six months, because - and I quote - "if anything was going to happen, it would happen within six months or thereabouts."This wasn't particularly helpful, and for the next few months I was ticking off calendar days until I reached the six month 'cut-off'. But then there was "thereabouts". What exactly did this mean? Six months and a few days? Six months and a few weeks? Seven months, eight? When the six months had passed, I thought I'd have some kind of mental closure on all of this, but it wasn't to be. And now, a year down the line, I find myself almost as anxious as I was in the run up to the six month mark.Of course, logical me says that there is a general pattern to the 'nasty disease', and that most people who are unfortunate to contract it will develop weakness long before they start twitching. And even those who do twitch first will usually become weak quite soon afterwards: the Mayo clinic mentions a three-month period; Forbes mentions six, and so on.Unfortunately, it is the non-logical me that often wins out, as it is winning out today, on this, my first 'twitchiversary'. It should be some kind of comforting milestone, but I have to admit that in reality, like all birthdays, it's just another day.

 

[ftheatre]

I am only 3 month in, I understand your point and maybe in 9 month I will be thinking just like you (in fact it would be quite good sign for me )This is the main problem with the "nasty disease", there is no way to prove you have it or you dont have it. When I discovered the absence of real test for it, I remember that I though it was the perfect trap for someone with anxiety trouble. It's a mind trap and only time can help you to escape.Another thing that can help to escape this trap is statistics. Remember it's 1 out of 100 000 that have the disease. Remember that if you are less than 40 years old is even less than that.Also remember that there is maximum 1% or 2% of people that could have the disease with only fasics for more than 1 year. I suppose it could still be you, but if I had to bet my house on You have the nasty diseaseB: You DO NOT have the nasty diseaseNo matter how bad you twitch, I would bet on B without a doubt.

 

[Gracer]

Hi Seepi, I must admit that many of our fellow BFSers have an idea that time itself might heal if not the twitches but anxiety. And that is probably one of the biggest mistakes that we can do.I clearly admit that not all BFS cases are accompanied with GAD or other anxiety disorders, but almost for all of us anxiety rises high in the course of even purely somatic syndrome, and we must know that this is what could really be treated and quite cured. Anxiety of that type - when one feels that the world is changed and never would be the same, anxiety related to the fear of doom - that type would never cease by itself. it makes a kind of strong and self-sustaining patterns in our brain, and makes it bloody quickly, really in few hours, while to shut them off might need month and years of steady efforts...good news is that it is curable even in those who suffer for decades, like me. And those who have less long account might hope for significant improvement.

 

[RockSolidGuy89]

one year in - so what?well......your odds have significantly reduced of getting the disease you fearyes there are rare cases, but then again there are rare cases of everything, of sudden adult death syndrome, of terrorist attacks, of people choking on cheese - we can't live our lives focusing on rare cases or we won't live our lives at allit's difficult i know when the twitches and strange symptoms are a constant reminder of "what if....." but we have to focus our minds elsewhere, that is on the 99.95% chance that we have nothing too terrible rather than focusing 99.95% of our mind's energy on the 0.05% chance we have something bad - and we also have to get over the fact that we will forever be invincible infallible superbeings and realise we are all going to die and we can't control that factlet's just try to live our lives while we can and yes I know it's incredibly difficult to train our minds to tell the anxiety to f-off and to ignore the weird symptoms but until that's the real battle i think

 

[GeoffWab]

Your right CP.........one year in, so what.you were benign at day one, and your benign at day three hundred and sixty five.

 

[smithylab]

Hey C,I can totally relate to what you are saying. When all of this started, I told myself that if I made it to 6 months without any major complications, then I was ok.Well I am about 7 months in and I still battle the what if's. I guess it proves that sometimes you can have all of the tests and doctors visits in the world, but it doesn't always put the mind to rest when all of these crazy things are happening to your body.Remember that saying you told me about hearing horses and zebras, etc...well stop thinking they are unicorns.

 

[anI3l3m4n]

I'm a few days from 10 months in...and still (or, more accurately, again) afraid... I think I twitch more than I used to (bigger thumpers), but it's hard to say. It all started with one little twitch between two fingers that exploded all over after a couple of weeks. Funnily enough that area between the thumb and pointer hasn't twitched in a long long time

 

[jerryTwo]

Glad you made it to here and for your honesty. Remember, timeframe will not heal your fears I had a 3 months when I thought I will be ok (mentally if I still have problems in body), then 6 months, then I read a year is a mark you can not have the disease if you just twitch, and I have this atrophy I looked, seemd bigger... THen I read some guy had 18 months of twitching with no other symproms and the developed ALS and then... I decided I don't have it. I wrote a A4 paper and I have to read it 50 times daily why I am forunate to not have this disease. I am 15 months, I can wait for 18 months and I am sure there is one guy who had it 2 years and had the disease (the BFS doesn't prevent you from getting it so there has to be somebody and I could find it if I searched long enough).I have some fuc*ing disease that I know. But I have to keep my fears under control. Every month atrophied hand seems more atrophied yet in 1 year and 3 months it is still working. Are my eyes seeing what it is or is my mind changing the picture. I like to think the second.I wish I had 3 neuro exams with all clear. You have to let it go. The mental part. And struggle "just" with symptoms. It is hard enough. This disease we fear is so terrible that one you get it in your head you can not get it out. It is a disease of itself! Luckily it is just a projection what could happen to you, it is not real. You can only cheerish life more, now you know what kind of diseases there are.Deep down you know you can not have it after 3 neuro exams all clear, after 1 year, with symptoms so pointing out (pain etc.). There is just one symptms that share you and this disease. Look the other facts and let the fear out of you. Else you will be 5 years twitching and still will not be able to rule out it. It doesn't have a definite test. Nobody knows. You could have it also without twtiching, anybody could. But the odds are almost zero for you and for others.Go to woods, yell and cry, let the fear out, but don't let it to control your life. Easier said than done, I know. And I am the last person to tell you how hard it is, I struggle every day. I think I will twtich forever and have pain, numbness, tingling etc... I just want to get rid of the fear. Dealiong with other things without fear is then much easier.Hang on there!