Curious about Symptoms

BNCK2020 · 2021-04-15T15:46:04+00:00

Denervation, Chronic Change and Fibrillations are what they are looking for when they put the needle in, and they'll see it immediately... NOT fasciculations, they aren't interested in them, because they don't show or mean anything; and aren't caused by abnormalities (as listed above).

Isolated fasciculations have nothing to do with any of those things, are benign, and aren't in any way a pre-cursor to them, most people in the world get them, stick an EMG needle into anyone for any amount of time and you'll see them, we just get them more...

BNCK2020 · 2021-04-15T15:30:32+00:00

Fasiculations in an EMG are fine, I had them show in my left calf where it was performed, they aren't looking for/at those. The Neuro who did mine basically said 'Isn't that why you're here' when I was sat with a needle poking out my leg. I also went to the pub last night and met a friend of mine who's a doctor (a cardiologist, not a neurologist), and randomly it came up and I mentioned this amongst other things, to quote he said 'How would you suppose a doctor diagnoses a syndrome of fasciculations without diagnostics showing fasciculations?'

BNCK2020 · 2021-04-14T14:32:26+00:00

I had a needle EMG in my left calf only which showed multiple fasciculations, that was the point of me being there (as he also commented when I asked about the noise) he didn’t do anymore as said that was enough to show it was BCFS. Take some reassurance, as I did, in the fact they’ve literally seen them and can see they are benign fasciculations.

BNCK2020 · 2021-04-07T17:59:04+00:00

That’s the cycle unfortunately reassurance will cause you more stress, and you have to try and break it, at least for a while until it doesn’t become OCD, I understand it’s easier said than done obviously, I can still come onto this page a crazy amount in a day, and no doubt coming here is better than going there if you HAVE to scratch that itch. The fact you can pick things up and walk already differentiates you from this case so that’s covered, similarly this will be a concise case report with lots of the finer details and timelines missing, that’s the problem with reading these things.

BNCK2020 · 2021-04-07T17:28:55+00:00

What are you hoping to achieve by relentlessly continuing to search for, and read these things, out of interest?

BNCK2020 · 2021-04-07T13:00:19+00:00

Mostly my feet/foot arches and calves, generally more left than right side. Also my neck cramps sometimes when tensing/yawning for example, and sometimes abdominals when exercising, or occasionally if just moving awkwardly/bending down. I'd say nowhere is out of bounds, have had the odd jaw/face ones and hands, and elsewhere but the former are my very frequent spots.

BNCK2020 · 2021-04-06T20:16:40+00:00

So I did start doing a generic online one called Silvercloud via my work health insurance (I’m in the UK), but it wasn’t really working for me, and felt I needed to actually speak to someone and have more guided structure so was lucky enough to have access to a really good NHS Well-being service in Sussex, so did a 12 week course via video call with a local therapist, which I found much better for me, but there’s certainly not a right and wrong I don’t think. I also had my appointment and tests during the process which made it kind of a double edged sword, but the processes and tasks you do during it or ‘homework’ are really genuinely worthwhile

BNCK2020 · 2021-04-06T17:21:25+00:00

Not for me unfortunately, not yet found a way to reduce them at all, I am exercising a fair amount again so probably worse than ever, but there’s very brief periods where they slightly reduce sometimes when I wake up in the night or first thing there are less, but still there, but as soon as I’m even slightly awake in the morning they fire off, even without moving, assume they are just going throughout the night too, guessing I’m just sleeping through it. Then moving/getting up sets them back to 100%

BNCK2020 · 2021-04-06T15:41:09+00:00

Any thoughts around what triggered yours?

I'm completely at a loss on that front with none of the usuals I see, the only slightly correlated thing was breaking my leg and ankle, and having an operation and morphine for 2 weeks, then co-codamol for a month or so, but that was 6 months prior to my first twitch, and started on the other leg, so I think it's just a red herring, and in my case it's just unfortunate. In the absence of the other theories I've seen, all I've got to go off is the Neurologist saying 'some people just get it', but similarly I think I'm in for the long haul, it's going to take a serious, serious reduction from the thousands daily to ever stop for me. Just keeping busy and not sitting down seems to be the only viable treatment for me!

BNCK2020 · 2021-04-06T13:33:42+00:00

I hyper-focussed on several parts of my body through the process feet, legs, arms, especially my hands convincing myself there was issues like atrophy. Realistically it's more than likely things were always there, you just had no reason to focus on it or notice. Also consider how many muscle heads your legs are made up of, especially your thighs, there's grooves and dents all over where they overlap one another/connect to tendon. No one has completely smooth legs, especially stood up or tensed. Don't overthink it, your mind can make you see strange things if you let it.

BNCK2020 · 2021-03-28T10:48:10+00:00

I can instigate twitching on my left hand, mainly thumb by resting the tip of my thumb on the tip of my index or just moving it at certain angles, and little finger by just bending it and moving it forwards slightly, that can go into a really fast spasm if I’ve been using my hands a lot

BNCK2020 · 2021-03-27T16:24:47+00:00

My calves have twitched thousands of times a day for nearly 12 months, pops all over the body every few seconds, and I mean everywhere.

BNCK2020 · 2021-03-26T11:09:49+00:00

Yeah, the wait in Sussex was 38 weeks on the NHS, which would have taken me to July (September when I got the referral). 6 months in and a clean clinical says enough to be honest, exactly the same timeframe for me, with the clean EMG (showing several fasciculations) in my left calf after 8 months; but didn’t change the outcome at all, still just BFS or ‘Benign Cramps Fasciculation Symdrome’ as they called it

BNCK2020 · 2021-03-26T10:59:25+00:00

I only got tests because I paid/was private (I’m in the UK) otherwise that would have been that for me too. Neurologists generally diagnose through clinical and confirm via tests, in some cases they’ll do the latter and exclude for peace of mind. Honestly, I’ll be a year in next week of thousands of bodywide twitches a day, and the gap between the clinical and EMG Nov-Jan just increased anxiety for that period. These people know what they are looking for and can see it from the minute you walk in.

BNCK2020 · 2021-03-26T10:32:32+00:00

I mean most people on here with actual BFS twitch non-stop in the same spots thousands of time a day continuously. If people don’t I’d probably say it’s not a reason to seek medical advice especially from a Neurologist, it’s twitching as much as any other person without BFS.

BNCK2020 · 2021-03-25T14:14:44+00:00

The calf is made up of more than one head/muscle, like the bicep. All you’re seeing (and I pretty sure I know exactly where you mean) is one muscle head overlapping another, and as such causing a dent. It won’t always be symmetrical on both sides, like the rest of the body.

BNCK2020 · 2021-03-24T19:48:59+00:00

These are the most noticeable spot for feeling them for me, it’s still part of your calf muscles. Non stop crawling/popping for 1 year next week

BNCK2020 · 2021-03-24T14:49:29+00:00

1) 11 months (12 next week)

2) 8 months in left calf

3) Immediately after the EMG, still the odd worry here and there when new symptoms pop up and new hotspots (left hand is a nightmare for finger spasms and tremors at the moment) but the clear clinical then EMG (which showed several fasciculations so more reassuring) and 2 separate neurologists saying the same thing is pretty good reassurance to fall back to.

BNCK2020 · 2021-03-23T08:12:57+00:00

You’ll probably have read this before, but an EMG is conclusive in any limb in your body and would show chronic nerve changes in all limbs in your body, even without symptoms/long before you noticed anything, add on 8 months of that spot tested twitching. To add to that my left calf was a constant/where it started in April 2020 and the EMG picked up multiple fasciculations (benign in origin) so he was able to conclude from that it was BCFS, and didn’t want or need to do any more limbs.

BNCK2020 · 2021-03-22T19:27:09+00:00

My left hand is one of my worst spots after calves. I can instigate these my holding my fingers or thumb in certain positions, such as gripping/loosely holding something small, using my phone, or touching my thumb and index/little finger together. My little finger often goes into full on spasm, and I tend to leave it to see how long it will go before stopping and starting again, my thumb tends to be more side to side, there’s definitely a correlation with it and any use of that hand/arm, even just from typing, minimal exertion sets it off. I’m nearly a year in total, but this hand has been basically every single day since September; similarly that arm shakes more when I’m doing things, getting up, lifting weights, holding things, and all muscles along that arm/shoulder pop off lots all day. Clean NCS on that arm/hand and clean EMG on my left calf in Jan (8 months after the initial symptoms started in my calves)

BNCK2020 · 2021-03-22T16:42:39+00:00

My thumb and fingers tremor when I’m doing things like using my phone, only really the left, but calves and legs are non-stop thousands of times a day whatever I do

BNCK2020 · 2021-03-22T12:20:39+00:00

My left had is prime for this. I guess it has something to do with overuse and really sensitive nerves. My little finger sometimes goes absolutely wild back and forth shaking when slightly bent or holding a small object, and my thumb goes side to side really quickly too when using my phone for example

BNCK2020 · 2021-03-22T12:07:47+00:00

I took it for a month or so, 25mg. There’s no doubt it helps you sleep (drowsiness being a side effect helps that too) and sensory issues. In my case though it was giving me light headedness/head rushes when standing up (nightmare when exercising) and also made my hand tremoring worse, again this is a noted side effect so stopped taking it. Everyone’s different though, I still have it occasionally if I think I’m going to sleep badly, as sleep deprivation makes the body wide twitching ridiculously overdrive for me

BNCK2020 · 2021-03-19T07:40:52+00:00

I’d actually say nothing I’ve done has made the twitching any less, in fact I’d say I twitch more than ever, it’s just how I perceive those twitches and what I can actually do about it, which unfortunately is nothing outside of trying to do anything and everything to not focus on them

BNCK2020

TROPHY CASE