A fellow twitcher

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A fellow twitcher

Postby swisstwitch on July 2nd, 2014, 2:28 pm

Hi everyone, sorry for the long first post but I felt I needed to tell people about all of this :) thanks for reading

I've been twitching for almost 9 months now and have been creeping on this forum for about 6. I tought I should share my story. (Thought please excuse my english as it is not my first thongue, I am Swiss and speak french).

I am a med student who has always had a bit of health anxiety (just a tad, I would not call it hyponcondria) and about 9 months ago I had a quite stressful period at the university and had trouble sleeping for a few days, and out of nowhere came the twitches. I had had a few in the past, mainly in the shoulders but never more than for a few seconds so at first it did not worry me overmuch. It started in my left biceps and went for a whole day on without missing a beat, then slowly calmed down in a few days. But then it flared up in my other biceps, then the shoulders and just above the knee. At the time I told one of my neurology teacher (a neuromuscular specialist who gave us a class on the subject) who dismissed it with a "that's absolutely nothing, nothing at all".


As I said I did not worry at first, took magnesium (which my soon-to-be neuro who is a neuromuscular specialist later said was never proved to have effects) and went about my days. I new about ALS and MS but did not worry because of my young age (19 at the time now 20) as it is exceedingly rare at this age. I slowed down to only a few bouts of twitches a day after a month or so and I slowly forgot about them. But then I read an article about an early onset ALS case and went looking in my books... bad idea...

The fear started to creep in, I tested my muscles every day (Knowing how to realy do so did not help, I do not have the experience to tell if there's a problem) and as the fear came the twitches started flaring again, mostly in the neck/arms/shoulders and a bit in the upper leg/back/feet never in the calves thought. I finally called my GP (who really is one of the best doctors I know) who told me "that's BFS" but who nonetheless sent me to a neuro. The said neuro told did a full clinical and ended up telling me "BFS" I insisted on the EMG and she accepted after a few "just to be sure", She only did 2 muscles : right biceps and middle chief of the left deltoid (shoulder) not even a fasciculation showed up (at the time I had them a bit everywhere, moving from one spot to another and never staying for more than a few minutes). She saw a few on my quad just above the knee and told my that this was a "myokimia type fascic" so it was witnessed and aproved. my CK CPK were within normal range.

This all was 6 months ago (I had the EMG almost 3 months in), I have cooled down a lot, but it is still in the back of my head, everytime I see at the hospital a person with paralysis I think of it. It is far from crippling and I know that it will take me years to accept that this is really benign but I'm making progress.

As of now I have only a few bouts of fascics a day, mostly in the upper legs, a bit in the shoulders/neck, had a few in the calves. theses "bouts" as I call them last only for a few seconds (rarely a few minutes) and I haven't had a true hotspot for a few months. I see atrophy everywhere though (I know it's just in my head but often cannot avoid looking at it).
I felt vibrations a lot of times (mostly on the face and ...hum... *beep*) had an eardrum twitch once of twice (annoying those...) never cramped since it all started and had a few rare pins and needles feeling (not associated I think).

I read all the "worrying" articles, felt convinced by none of them (I guess that the other people who are in the medical area probably told you that some of those where so FULL of bias that they should never have been accepted for publishing, but I guess it's because BFS is not widely known) but still they are somewhere among all this worry.
Tdenver also gave me my share of worries, and I truely hope things have worked out for him/her.

Anyway, I am rambling and probably boring you so I'm gonna end the story to why I wrote today. It's been a long road to where I am now and I feel I made progress but still do not feel fully secure, not half as much I I'd want to be at least. Sharing all this to the people who indirectly helped me a lot through all this is helping a lot.


To finish this post I'd like to ask you a few questions (because as my teachers say : the best source of information on a rare/unknown syndrome is the patients)

1) Do I look like a typical case ? (even though I do not have as much twitching and sensory symptoms than most, very very rarely in the calves/feet)
2) Was the EMG I got enough ? or should she have tested more down the spine nerves (legs) ?
3) I know about the 8 months "safe zone" but read an article speaking about 4-5years, what do you think about that ?

PS : just wanted to tell you also about a tought I had some time ago about "vibrations", I do not know if there really is truth to what I say or if it has already been said. I read about it here as being a "sensory" symptom and do not think it is, I felt it like a tiny-tiny very-very fast fascic (a vibration yes) but belive that it is way more likely that it is indeed a fascic but of very small muscle bundles (only 2-10? muscles cells (fibers)) and are very fast because the muscle fibers (beeing tinner) are much more easy to exite (for reasons which I might develop but are a bit technical and boring) which are then felt as being different from normal fascics.

Anyway, thanks A LOT for reading this big post and for helping me all these months :)
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Re: A fellow twitcher

Postby Yuliasir on July 3rd, 2014, 12:52 am

Hi,
first of all anyway you know more than most of people here :) becasue of being a medical student.
Then, as a medical student you must know that doctors are extermely prone to rtwitching syndromes probably due to high stress during studies and when working. Almost all neiros went through this syndrom of 2nd term student:) and many doctors of other specialities.

As for 4-5 years of twitching before MND... considering that twitching is generally wery common... how could we know if there is a RELATIONSHIP or not? having a running nose does not mean it delelops into MND, same for twitching... we just have no idea right now how to distinguish between possibly malignant or innocent twitching.
While we have here on site dozens of people reporting safe life after 5, 10 and even 20 years of twitching. We have several cases when 5-7 years of twitching result in some secondary bout or more symptomes, some people report they developed (or were finally diagnosed with) Isaak syndrome. We have at least 1 case of benign MND (raindog) and tons of users who just left the site after year or two for never coming back because their twitches become a background noise or wanished.

As far as I understand, nowadays medical consensus still acknowledge that in 6-8 % of all further MND diagnoses twitches with no weakness are first noticeable symptom leading to medical referral and that ususlly in case of routine followup it takes not more than 2 of visits (6 months) to notice malignant signs leading to diagnosis.

We also must remember that this site also has a bias - it is a site for twitchers from al the world with no filter therefore we have more chances to see here people from this unfortunate 7 % :(
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Re: A fellow twitcher

Postby swisstwitch on July 8th, 2014, 10:08 am

Hello ! Thank you for your reply.

I agree with everything you said, especially the bias part, I think this is why in only about 5000 members there where a few cases of nasty diseases that are normaly a lot rarer (I lately followed Ian's case here and was very sorry to hear about how it ended).
I also read about doctors/nurses/med students beeing prone to BFS, my GP told me about it too. I think that self-consciousness about our bodies is a big part of the problem, that and the stressful life in general.

But even knowing all this I still worry a bit in the back of my head, I don't feel I am very similar with most people here (Having twitches mostly in the arms/shoulders and less than most people), I know this should reassure me but weirdly it doesn't. I am unsure if my twitching have really become a background noise, It seems to have stabilised these last few months.

Has anyone had a similar pattern of twitching ?

Have a good day :)
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Re: A fellow twitcher

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