Had a letter today saying my EEG was normal, so epilepsy is not an explanation for my jerks. It says that I had a couple of jerks of trunk and limbs but they were not linked with electrical activity. Good to rule out epilepsy but I still need an answer.
Who gets fasciculations? My left thigh was going bananas earlier. I’ve regulalry had little twitches since all this began in Novemebr but these were quite big, you can watch them clearly.
My legs are still buzzing too - have been trying to think how to describe it and best I can think of is if you watch all that black and white stuff on the tv flicking about it looks like I feel. Is that too pecualir a description?!!
I get lots of little twitches around my face, upper back, hands, feet and legs. On my neurologist examination it said I had no signs of fasciculations but I do get them, just wasn’t experiencing them at that moment in time. Mine are clearly visible (and I can feel it happening) and they make my fingers or toes move. I’ve been told M.S is the likeliest diagnosis for me so I guess mine are just benign.
I’ve had periods when I’ve had a lot of fasciculations (mainly in my legs, but also fingers), but I don’t get them any more. They are found in quite a few things I think, including various vitamin deficiencies (e.g. my daughter used to get them a lot because of B12 deficiency). It would be worth seeing your GP to get the various options tested, just in case.
Not so sure about the black & white telly explanation, but I understand “buzzing”!
Karen - I take a reputable B-complex every day. Realistically, with all the other symptoms past and present, it’s not vitamin deficiency. I can’t think what else I could have wrong bar MS, especially with my GP saying the same. The fact I had 6 weeks of hell Nov-Dec (which is when the twitches and myoclonic jerks started) and slowly got better but not entirely better and now have new symptoms such as the buzzing makes MS seem pretty likely. I’m not stressed about whether I’m diagnosed soon or it takes a while. The symptoms I have now are peculiar but ok, the fatigue isn’t anything like it was even a month ago so I can cope. I think if it is MS it’ll make itself apparent soon enough and if it isn’t it’ll go away soon enough!
utterchaos (fab name!) - are you not sure I understand why if MS is most likely for you the twitches are benign??? That surely means they’re not benign?
jen - having them in the scalp sounds weird! Poor you . Video sounds a good idea, might do that on my camera.
I realise that it is more than likely related to all the jerks etc, but it’s sensible to get new things checked out, just in case. One of the things that really struck me from the very first book I read on MS was the statement “the most common cause of death is patient assumption that a new symptom is due to MS when it is not”.
Not that I’m saying that fasciculations are lethal mind you! They can be caused by defiencies of all sorts of things including magnesium, vit E, selenium, calcium, B12, sodium,… and although this would hopefully be relatively easily fixed, if it’s the reason, it might also be a sign of a more problematic underlying cause which isn’t.
Still, I’m sure your GP has done loads of bloods since this all started!
Thanks Karen - I hope you’re enjoying the sunshine. I read that about puttin geverything down to MS when you wrote it once before and, yes, it still rings in my head when reading other posts; it’s very good advice. I will ask for a vitamin specific test, it’s about time I catch up with the GP anyway and hols are looming so I’ll have time to do so. I have had thorough tests, including for tropical things, but I’m not sure if the vitamins are included routinely?
Jen - my kids and friends score my jerks out of 10!! It’s become a party piece too
By utter coincidence, I just read that some people with vitamin B12 deficiency have normal blood tests! How confusing!!!
What the paper (Wong et al, 2008) actually says is:
“B12 deficiency causing neurological problems may occur without any haematological abnormalities, even sometimes it seems with normal serum B12 levels. With a typical clinical presentation in the presence of a normal or borderline B12 level, helpful confirmatory investigations include raised urine methylmalonic acid and fasting serum homocysteine.”
It’s no wonder neurology is a bit of a minefield and diagnoses can take ages! If I remember right, your neuro is a good one - so I bet he’s checked already if he thought it was needed.
Hey Deb! The sun is lovely - but now I’m hiding in the shade because it’s too hot for me already lol !!! But it sure lifts the mood eh!!
I am wondering about your query about blood tests too. I’ve been presuming these tests are routinely done? I’ve had quite a few blood tests with the GP but I was also under a haemotologist for 18 months having blood tests done every few weeks - so I’m hoping I’m right and the vitamin deficiencies etc have been ruled out?
I’m going to ask my GP next week to clarify what has and has not been tested - I’ll be really annoyed if they haven’t & I’ve been going trough all this - when a simple supplement would have stopped it!!!
PS - on abeautiful day like this I’m thinking Pimms!!! xxjenxxx
Hey Deb! The sun is lovely - but now I’m hiding in the shade because it’s too hot for me already lol !!! But it sure lifts the mood eh!!
I am wondering about your query about blood tests too. I’ve been presuming these tests are routinely done? I’ve had quite a few blood tests with the GP but I was also under a haemotologist for 18 months having blood tests done every few weeks - so I’m hoping I’m right and the vitamin deficiencies etc have been ruled out?
I’m going to ask my GP next week to clarify what has and has not been tested - I’ll be really annoyed if they haven’t & I’ve been going trough all this - when a simple supplement would have stopped it!!!
PS - on abeautiful day like this I’m thinking Pimms!!! xxjenxxx
I believe with m.s they are deemed benign rather than a sign of something more sinister like ALS. When trying to understanding this symptom I get lots of conflicting information when I try researching it some saying it isn’t a sign of m.s and others saying it is.
Yes - some kind of ‘gremlins’ crawling under the skin!!
The only other way to describe it is when you are carrying a baby & it’s moving and shifting around - with the odd kick thrown in!
Come to think of it - the early days & first ‘flutterings’ of pregnancy can also describe the sensations that I’m having - particularly in my chest and uper abdomen!
For ages I was wrongly calling these palpitations - but I’ve recently realised that actually they are nothing to do with my heartbeat - they are fasciculations in the very top of my abdomen and under my ribcage.
One of my most distressing and debilitating symptoms has been the girdle-like banding and spasming around the chest and upper abdomen - that comes in waves - and has been so violent and constant that it’s put me out of action for weeks!
I’m not diagnosed with anything yet but I don’t think anyone can deny that these things are all related somehow!!!
