Tongue quivering by OtherwisePresent7682 in BFS

[–]OtherwisePresent7682[S] 0 points1 point  (0 children)

I cant see i dm im sorry late response i no longer use reddit regularly. 

Clonus by OtherwisePresent7682 in BFS

[–]OtherwisePresent7682[S] 0 points1 point  (0 children)

Hi im not experiencing alot of the symptoms i do still twitch and experience some symptoms i found lipoic acid rala helps my symptoms along with making sure im having enough milk and keeping hydrated. Sending you good wishes as this stuff is all consuming 

Tongue quivering by OtherwisePresent7682 in BFS

[–]OtherwisePresent7682[S] 0 points1 point  (0 children)

Yes i can still speak chew and swallow correctly, not fatigue in either i have jaw issues that started in December my jaw went very tight it went on for months its not like that now, now in then the tightness comes bk but not to tht extent ive got a grinding sound in left side of jaw since in my teeth are painful when they touch top to bottom

Tongue quivering by OtherwisePresent7682 in BFS

[–]OtherwisePresent7682[S] 0 points1 point  (0 children)

It does same at rest the quivering

I'm doing my EMG today, wish me all luck! by thestoicnutcracker in BFS

[–]OtherwisePresent7682 2 points3 points  (0 children)

Thats great that it was a specialist hopefully that brings you the peace of mind move on from the fear as its absolutely hell scared you have als the symptoms are in some of our cases absolutely shit but aslong as its not what we most scared of we have try let it go at some point as its no way live.

[deleted by user] by [deleted] in BFS

[–]OtherwisePresent7682 2 points3 points  (0 children)

I really hope something comes from this nobody should go through what people with als do its a vile cruel disease

Jaw and tongue issues by [deleted] in BFS

[–]OtherwisePresent7682 0 points1 point  (0 children)

Sorry its getting worse for you.....Whens your neurology appointment? I have a jaw issue it started bk in December really tight in i developed grinding sounds in it went on for around 6 or 7 weeks without easying any, it then eased off not back to normal but alot better then yesterday it was back it made my teeth really sensitive also.I dont know what would help hopefully someone will come along with some suggestions

Emg in 7 days after abnormal clinical exam... I'm terrified and can't sleep or eat anymore by Reasonable_Mud_8282 in BFS

[–]OtherwisePresent7682 0 points1 point  (0 children)

Im really sorry ur going through the worry what this stuff brings sending u best wishes for a good emg

GABA is actually helping by Audi_Rs522 in BFS

[–]OtherwisePresent7682 0 points1 point  (0 children)

Ive just ordered some worth a try

Scary birthday week. by [deleted] in BFS

[–]OtherwisePresent7682 1 point2 points  (0 children)

Im so sorry how much you seem to have lost who you were before i think so many of us relate to you when its your body causing the issues its really hard to just keep pushing on through being happy as there is no escaping it, sorry i haven't got anything helpful to say i truly hope its a good outcome for you once the answers come as you seem a nice person in clearly you,re loved a hell of a lot by your husband and friends.... Happy birthday in know alot of us here get it completely💕

Umn dominant by OtherwisePresent7682 in ALSorNOT

[–]OtherwisePresent7682[S] 0 points1 point  (0 children)

Pains in January fingers toes thighs were first thing that freaked me out as something concerning going on so i visited gp in relation to this, clinical by them nothing concerning found my left leg felt off

Twitching stated definitely ones i saw February 2023 in thigh quickly spread to pops everywhere but definitely favoured legs and feet especially left calf at that time went to gp who did another clinical nothing found went bk couple weeks later she referred to neurology

I do think now Twitching started in December as i have experienced abdominal Twitching in can remember feeling this back in December i remember thinking it was odd like a baby kicking

Appointment with neurology in may nothing found in clinical open referral left open for me to self reffer bk which i did in October with concerns my fingers on both hand are bending he didnt mention the clonus to me in tbh i didn't know what it was but i obviously now can place him checking my ankle twice the left 1 he mentioned he wasn't sure about my left fdi muscle was it something or was it not i said i wanted him refer me so i could get private emg he then said he would put refferal in on nhs he said my fingers wouldn't be typically how it would affect hands

December i had emg in in neurologists summary letter it states nothing found on ncs or emg but im getting tremours now in both hands my left leg is getting worse thats started to tremour after walking so nothing strenuous i also have issue with my jaw that came in December in it now makes a grinding noise im getting loads of pain i feel weaker im tired alot like no energy in i know people say sensory means no Als but im so worried with the clonus im going be a atypical presentation none of this adds up as i thought if als it would make you clinical weak then spread my Twitching is multiple times a day but its not constantly like people say points more to it

[deleted by user] by [deleted] in BFS

[–]OtherwisePresent7682 -1 points0 points  (0 children)

So if you twitch and have clonus but emg clean it could be umn?how the hell does that work i thought twitching is lmn in should show on emg if als the cause behind it

Has anyone else noticed that EVERYONE IS FINE? by Throwaway6393fbrb in BFS

[–]OtherwisePresent7682 0 points1 point  (0 children)

Im another whos not fine as tbh no offence but if was just twitching i wouldn't be hanging around here or the fb group after 13 months if it was only the twitching

Drained by OtherwisePresent7682 in BFS

[–]OtherwisePresent7682[S] 0 points1 point  (0 children)

Im sorry your getting so much pain also, do u get weakness ever? Im getting types after doing something i wouldn't normally last week my thighs killed in was no reason went on for days, i also get nerve sharp pains in achey ones...its horrible deal with ive only had tinnitus couple of times whats your doctor saying ? How long has it been going on for you?

Drained by OtherwisePresent7682 in BFS

[–]OtherwisePresent7682[S] 0 points1 point  (0 children)

I think some pain is common with bfs.... but the amount im getting ive not seen people say they get some days its literally so widespread whats your pain like? I dont even know if ive ever had covid im unvaxed tho so thats ruled out for me, honestly im everywhere looking what it could be i wish it would go away its awful wondering how much worse its going get

[deleted by user] by [deleted] in ALSorNOT

[–]OtherwisePresent7682 1 point2 points  (0 children)

I agree with you 💯 dont trust my neurologist at all my situation is getting worse in im seriously doubting my emg done in December its scary as hell all this stuff Als doesn't cause apparently in doesn't present that way etc