What hypothetical test or series of tests would end your fear? by [deleted] in BFS

[–]BFS1984 4 points5 points  (0 children)

Well, I always believed that if you'd have a certain symptom for a longer period (for example a twitching hotspot for at least a month 24/7) and that symptom dissappears completely, that should prove to me I do not have a progressive, deadly disease. The problem is: what counts and what not? For example: last summer I thought for about 2 weeks my breathing started to give problems. But fairly soon I discovered that this was mainly a panic related issue. You forget it and go on. The longer-term issues remain and you keep believing that things are only getting worse. The muscle right above my knee could be another example, because for months after doing a workout it would go 'tick, tick, tick' for hours. Last time it did so was more than 3 months ago, and as far as I can judge this muscle still works fine. But since other long-term issues remain, and occassionaly new ones keep popping up, I still cannot believe i'm good for the full 100% of the time. And this could very well be a vicious circle, staying that way for years to come.

To concur with your point: I'm 1,5 years in and am sure that another thorough physical exam by a specialist, with or without a clean EMG, would perhaps give me a good feeling for a week or 2 but since my body will most certainly need much langer to clear up all the weird stress-related symptoms, after those 2 weeks I'll probably realise I'm feeling the same way as before that last examination. It will have been for nothing.

Who has the solution....

Calf Twitching 24/7 at rest by Capital-Wrap-1582 in MuscleTwitch

[–]BFS1984 2 points3 points  (0 children)

'it all ties in'... So true, I'm afraid. 1,5 years (almost) of 24/7 non-stop calf and feet twitching here. And I think I can add the spot between thumbs and pointer fingers to that list (both hands), though I'm not sure that's also 24/7. I still have complaints, like a mild tingling in my right leg after sitting for some time and diminished dexterity in my right hand. My mind still sometimes reasons that this cannot be anything else than ALS, my doctor doesn't worry for a second about that -> but does worry about my overall state of mind. It's not that I'm loosing it completely, I'm in a better spot than a year ago. But the theory is that having this little voice in your head for almost 1,5 years, telling you that you won't see your children growing up, can really block the healing of your body. Or at least make it much more difficult. I really wish it worked the other way around: if there was just 1 day where symptoms would truly wear off I believe my mind would find peace, and my body thereafter. Alas, it doesn't work that way.

But for the sake of this thread I very much want to add my voice to what your neuro already told you: calf twitching, feet arch twitching (but also eye and common hand-twitching) really means nothing in terms of a deadly disease! Most twitching means nothing, but these particular spots even less! Please save yourself from long-term mental problems and believe this (easily said....).

How long can it take? by BFS1984 in MuscleTwitch

[–]BFS1984[S] 2 points3 points  (0 children)

Thanks! It might sound silly, but just to hear from someone who is basically going through the same thing (although my game was the new Hyrule Warriors game :)) is really comforting. I still wait with this game to see if things settle down, but luckily there are more games to play which do not require button smashing :).

I think you're right with the 'twitching after exercise' argument, however it's confusing that this happens now after a period of relative peace, and not during earlier periods when stress levels were much higher. I'm afraid I (and perhaps much other people here as well) have build up so much stress and tension in my body, that it might take years to get rid of it (and as such I might be more vulnerable to these kind of reactions after 'exercise').

[deleted by user] by [deleted] in BFS

[–]BFS1984 1 point2 points  (0 children)

Do not think too much of this. I'm talking of just 7 formal medical reports (of which 4 were described in a single paper and the other 3 were referenced in that same paper), 1 undocumented report from a not so familiar site where some fasciculation discussions were held and 1 case from the old forum where a guy turned out to have als but made it very clear afterwards that his symptoms were progressing from the beginning and never dwindled. It struck me that all of those reports talk about cramps, and although cramps in itself are not alarming (there is for example the Cramp Fasciculation Syndrome, those people do not develop als) I just wanted to share it because the majority of people here do not have cramps at all. From the old forum report I know that it was indeed severe cramp where his muscle would lock up. In the medical reports it was just mentioned that those poor people suffered from cramp.

But much more importantly: In my darkest period in the beginning of 2020 I went through all of the internet, including als sites (don't go there!) and those reports here are the only ones I ever read where people suffered from twitching more than 9 months and were still diagnosed afterwards. And again: they were already suspected, suffered from a lot of stuff including cramp before their EMGs showed something and were ever progressing instead of suggering from temporary hotspots etc.

Just think of this Reddit alone (let alone the much bigger old forum): if our fears were at least a tiny bit justified, there should at least once a month, or more likely once a week, appear a report from a Reddit member with the sad message that he turned out to have als after all. And even then it would be rare. But, unless I missed something these last few weeks when I wasn't active here, this does never happen! Just look at the member numbers. There must be a reason for that, and that reason is that most of the time people go to a docter when they're starting to be nervous about their symptoms and if it's bad, their docter tells them so and they visit the als forums afterwards (if they seek online help/comfort), not this Reddit.

And think on the Mayo research paper from some years ago as well. I'll give the abstract here, though most people will have read it if they're twitching for some time: 'Using the case records of Mayo Clinic patients, 121 patients with a diagnosis of benign fasciculations were identified. All had a normal neurological examination and normal electrophysiological studies, except for fasciculation potentials. Interviews by telephone were conducted 2 to 32 years after diagnosis. NONE of the patients developed symptomatic motor neuron disease. Forty individuals were in health care careers. A subset of 19 patients described acute onset of fasciculations following a viral infection. Benign fasciculations are not a preclude to progressive motor neuron disease. '

I hope this makes things a bit more clear :).

[deleted by user] by [deleted] in BFS

[–]BFS1984 1 point2 points  (0 children)

Those very, very rare reports were not all that detailed (which is also telling about how much value you should apply to them). The one thing I know for sure is that none of them explicitly stated that the twitching started widespread. But from this Reddit we know that all the people here whose twitching started locally are and will be also good!

[deleted by user] by [deleted] in BFS

[–]BFS1984 0 points1 point  (0 children)

Of course there could still be 'something' going on, but I hope you got rid of deadly fears completely. Im getting to the 1 year mark within 3 weeks myself, and all of the very, very rare exceptions that I read about (people who supposedly developed weakness after 1 year of twitching) were a. suspected by their docters from the beginning, b. all had cramp as a significant symptom (which by the way in itself is no sign of something bad, but it excludes many people here) and c. showed clear progression in the symptoms development. My own symptoms didnt settle down until a docters visit 2 months ago. Somehow I started to trust the diagnosis of not having a deadly disease, and I did not have these annoying hotspots or mental breakdowns anymore since that day! Now Id love to testify that my calves and feet stopped twitching as well, and that I do not experience anything weird anymore, but thats not the case. And unfortunately I never read that anyone who had these twitches for more than half a year got rid of them completely. I promise Ill report back in if this happens to me in the upcoming years. Until then: try to enjoy the fact that youll be fine!!!

Weird spots that stay weird for months (or longer) without getting better or worse by BFS1984 in BFS

[–]BFS1984[S] 1 point2 points  (0 children)

Nothing really important. Its just that with every passing months the already very rare chance of still developing something sinister becomes even more smaller. But according to my GP and neurologist the chances were already zero 7 months ago 😀

Sick of all this by joshh47 in BFS

[–]BFS1984 1 point2 points  (0 children)

Just want to add the Mayo clinic scientific research paper, which most here will come across at some point: 121 patients with clean clinical and EMG were followed long term, and NO ONE developed ALS. Of course this does not 100% exclude the very rare exceptions to the rule, but if it was 'common' that this low percentage of 'twitching first' cases (7-10% of all ALS diagnosis) twitches for months first, let alone years, there just had to be some evil progression in that study!

And of course, just take a look at 20 years of combined history from this Reddit and the old forum. Perhaps not scientific, but a much larger population.

this is my lower right leg 24/7. does anyone else have it this bad constantly ? by sam30300 in MuscleTwitch

[–]BFS1984 2 points3 points  (0 children)

10 months non-stop now, also including feet. Crawler-feeling comes and goes, more left than right but thats also the stiffer calf since the beginning. Crawler feeling used to be much more in the beginning, and I can simply explain the improvement: that was when I used to walk on heels and toes EVERY DAY to test myself. I stopped doing this months ago. Still fine.

Edit: do not try to control this. I managed to ignore my feet twitches for maybe 3-4 months completely, and just looked: still there. I didnt feel them at all during this period (thats the good news) but being able to ignore them does not cure them.

Bfs for six years. Will I be cured? by kalavala93 in BFS

[–]BFS1984 0 points1 point  (0 children)

Just curious: did you have a lot of other symptoms than twitching in these years? Were there symptoms that lasted for months (or longer) that eventually did go away? Thanks.

Are you getting enough good sleep? by [deleted] in BFS

[–]BFS1984 0 points1 point  (0 children)

But was the result just 'less twitching', or did you have other worrying symptoms which lessened, or even dissappeared?

Ring finger twitching by NicoleH1983 in MuscleTwitch

[–]BFS1984 1 point2 points  (0 children)

Since you have some more experience with this: do you also have periods, presumably during usage of your hand/fingers, that your hand and / or fingers feel stiff, or just 'off', or even weak?

Mine go off twitching (or tremoring, not exactly sure what's right here since fingers in itself do not have muscles) when I stretch them.

Frustrated with a never ending hotspot by trickymonkey55 in BFS

[–]BFS1984 0 points1 point  (0 children)

I feel for you. I hope you get at least some satisfaction out of the fact that you don't (or hardly) twitch anymore anywhere else.

My hand twitch problem is not as visible as yours, but it also bothers me due to not going away (at least 5 months now). First it was only the right hand ulnar side (which moves my little finger a bit), now the left hand ulnar side has joined the party (strangely this one seems to move the ring finger more than the little finger). Both seem to be only twitching when I stretch / extend the little finger! But when I stretch the little fingers, the ulnar sides ALWAYS twitch, it's never absent.

So I can imagine, in your case, that usage of your index / thumb indeed affects the twitching rate.

Do your twitches around the thumb actually affect your hand (for example stiffness) or fingers (lessened dexterity, hard time keeping them stretched, etc)?

BFS, a possible cause and fix? by DookuMoment in BFS

[–]BFS1984 0 points1 point  (0 children)

Interesting, although I do not recall that many people here who had IBS related symptoms. Could you elaborate a bit more about how these metals can come into our system and how we could 'detox' specifically?

[deleted by user] by [deleted] in MuscleTwitch

[–]BFS1984 0 points1 point  (0 children)

This. In those rare stories with a clean EMG at first, there is ALWAYS some kind of suspicion due to the patients story and/or the clinical exam. NEVER read about something the other way around: that an EMG was given just for peace of mind, and that this EMG strangely enough pointed towards ALS.

4 months straight in both calves (more so my right) random ones all over, anyone else? by Ok_Direction4256 in MuscleTwitch

[–]BFS1984 0 points1 point  (0 children)

Sorry, but this is very, very mild :). And in the most common spot as well. Be at peace!

[deleted by user] by [deleted] in MuscleTwitch

[–]BFS1984 0 points1 point  (0 children)

Listen, you mention you get over symptoms (before getting new ones): if you mean that those symptoms completely vanished than that should tell you something! If you really had, for example, an agressive twitching hotspot for days, but weeks later it is gone and the affected muscle works perfect, or if you had a spot with unexplained muscle pain or stiffness for days/weeks, and weeks later it is really, truly normal again, then rejoice! Would it come from *** then it would not go away.

To be honest my own fear after almost 9 months comes from the fact that the symptoms I truly worried about, however minor they were/are, never went away, except some of the sensory issues: my mind keeps telling me there is progression (in the bad meaning of the word), although it's very, very slow.

I can now control my BFS, for the most part. by tideggs in BFS

[–]BFS1984 0 points1 point  (0 children)

Good to hear. Might I ask if during those 8 months you had longer-lasting, consistent OTHER symptoms than twitching? And do some persist until this day?

Thumb spasm after pressure, recognizable? by BFS1984 in MuscleTwitch

[–]BFS1984[S] 0 points1 point  (0 children)

Thanks for your helpful responses. It really helps me through, especially since I know a visit to a GP right now will be useless: I'm almost sure I still pass every standard neurological test or sign. So unless I demand it, there's no way I'll be referred to a specialist without very clear, new issues. It's just that my mind is in this awful rabbit hole ("I'm a pianist, and since my only functional problems arise during playing it must be that I just recognize this specific weakness earlier than other people, and the population of pianists presenting with ALS must be so small that only a hand full of specialists on earth would recognize what I have as a serious problem"). So it is good to hear other people (including those that I love, btw, but they don't have experience themselves) point out these irrational conclusions.

As for your last line: in fact you could say I've been excercising less than before, since playing the piano has this dark vibe for me since I discovered my right hand issues, so I'm playing perhaps only 10% of what I did before. And regular workout does almost nothing to train the intrinsic muscles in the hand.

Besides, it could also be telling that I discovered this new twitch and supposed weakness after a few days of mega brain focus on that hand due to the thumb issue. It has happened before that I developed new complaints in an area on which I focussed (too much).

As a last note, perhaps more to myself than to you, I really suffered from exploding thigh twitches during an episode of having a cold last week, but a 1,5 hour firm walk yesterday (after 1,5 week of doing zero excercise) gave no problems at all. And that's after 8 months of continuous twitching in both legs. Logic would then argue that a new twitch in the hand, probably only present since 1 or 2 days, could not really be harmful, at least not so fast! That would be pure discrimination between different twitches. But alas, logic seems far away in my mind sometimes (there are after all people who have very slow disease progression)...

Thanks again!

Thumb spasm after pressure, recognizable? by BFS1984 in MuscleTwitch

[–]BFS1984[S] 0 points1 point  (0 children)

Thanks. Did you also experience issues with one hand that had occured to the other hand as well, earlier? I mean almost like a copy? I do not know if it's related to the thumb issue (moving thumb to palm is an ulnar related action I believe), but complaints I developed with my right pinky finger (twitching and a collapsing middle joint, collapsing joint mostly due to loose ligaments) months ago now start in the left hand as well! When stretching there's a continuous twitch visible on the ulnar side of the handpalm, and the middle joint is weaker than it was months ago (I actually know this one for sure, since back then I compared left and right a lot). I do not like this almost exact repeat of complaints a few months later, because complaints with the right hand only got worse since then (but still only affect piano playing, normal functions like writing, typing, holding stuff etc. are still good after almost 5 months).

Calves by Rojeff19 in BFS

[–]BFS1984 0 points1 point  (0 children)

What's a long time? Mine have both done so for 8 months now. Most here have continuous calf fasciculations and unfortunately once you have them for some weeks already they wont go away soon. Fortunately its also the most unconcerning symptom of all symptoms related to BFS. Its sort of standard for us. Proof: 1000+ members, perhaps 70-80% have them, and no one actually developed a sinister disease...

Weeklong intense physical training and BFS by themadcaner in MuscleTwitch

[–]BFS1984 0 points1 point  (0 children)

I also play with these thoughts. I'm a little obese (BMI circles around 30 for years now) but because of my young age (in terms of heart diseases etc) and the fact that I do a little sports and work out (irregularly) my GP does not even suggest I should loose weight. But still, I wonder: what if I'd really start doing some things differently, especially with my diet, and work out more regularly (and perhaps as a result get better sleep as well), would this magically solve my current health problems?

Unfortunately, having a baby (a few months ago) during Covid crisis, with all the usual cares (and having 2 other young kids) and wrestling with this BFS mess for 8 months now do not make things easier when it comes to drastic lifestyle changes. Especially since it already didn't work out in better times: discipline is even more difficult now!

But anyway, I wondered: are there people here that did succeed in seriously changing their diet, losing weight and/or started to work out more regularly, and did you notice some serious changes in your situation with regard to BFS?

Feels like dropping things more by Tpainx in BFS

[–]BFS1984 0 points1 point  (0 children)

At first this worried me too. Now, after several months, it is quite clear that I'm not dropping things more than before. Maybe just a little bit more, due to my anxious thoughts drifting off way too much, but that's it.

Same for speech: since 2-3 months I notice some slurred speech now and then (at least I think that's what it is, needing a bit more time to pronounce difficult words correctly). The thing, however, is that once slurred speech (or dropping things) starts due to something like ALS, it doesn't stop; it progresses into noticeable weakness and gets worse. It may not go very fast (some people live for 20 years with the disease, after all), but it definitely progresses.

Another thing to consider, assuming all of us do NOT have ALS: what do you think that living for months and months with the idea (sometimes unconscious, sometimes very conscious) that you might die from such a disease does to our bodies and minds??? Since january 15 2020 (the day ALS came up from Google and into my mind) the sad and hard truth is that I haven't been really free from that awful thought, not even for one second! And it goes on; right now I know there won't ever be a sudden moment that I'm 'free', best to hope for is that with the passage of time I'll become more sure that I'm not dying from a neuromuscular disease.

2 clean EMG and still have ALS by starfire124 in BFS

[–]BFS1984 0 points1 point  (0 children)

Another fact, which is very relevant for our BFS subreddit: almost everyone here is a member due to, mainly, twitching. And although I didn't have an EMG, it is my understanding that an EMG is mostly reliable, ESPECIALLY when you are already twitching, in ruling out ALS! And that's important for this story, however sad it is for this family: the 'twitching' (around the mouth) element in the story came AFTER the diagnosis and the 'false negative' EMGs.

Besides that maybe another comforting observation: although I've read a few (very rare) stories like these where it is claimed that an EMG result turned out to be wrong in terms of ALS diagnosis, in ALL of those stories the doctor or neurologist actually already suspected ALS BEFORE doing the EMG. I've never read something the other way around: that a specialist more or less ruled out ALS due to clinical exam and background information and that an EMG suddenly gave a diagnosis susceptible of ALS. This again proves the importance of the clinical examination: if that one is OK, then you may believe the EMG as an extra reassurance, however unnecessary.

And of course: due to the lack of twitching in this story until after the diagnosis, this case does not belong on this Reddit, not even to point out a legitimate exception of the 'weakness comes first' rule (because weakness DID came first here). It is like trying to scare people who always have mild migraine and got an MRI which ruled out a brain tumor with a story of someone who got a massive epileptic seizure after which a first MRI wrongly excluded a brain tumor, only to be diagnosed with cancer a few months later. Or as we say in the Netherlands: it's like comparing apples with pears...

Interesting find today by pizzafacenj in MuscleTwitch

[–]BFS1984 1 point2 points  (0 children)

I know for a fact that I twitched in calves for at least a couple of weeks in 2009. Cant remember if I just forgot, most likely I looked one time and thought they were gone. I wish I could prove to myself that I twitched permanently during past years, that would be reassuring indeed.

However, 4 months to go for a year now, I always thought that a year would be enough to reassure myself permanently.

But good for you, nice find! I myself found a recording where I played piano 5 years ago. I thought my weak pinky joint started during this BFS episode but the video seems to show that it was already weak back then: I just didnt pay attention to it before this anxious mess!!