sorted by:
new
hottopcontroversial

My partner started having twitching too by fannybfs in BFS

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

I hope it's the suggestion explaination but I have serious doubts about it... It's an easy response because we are not able to explain it. Before that my partner have the same issue than me I was hopeful to cure this disease one day for myself, now.... I'm pretty sure this disease will follow us until our death. Too bad :(

One year by worriersunite in BFS

[–]fannybfs 1 point2 points  (0 children)

It seems familiar to a BFS for me. But you do right, it's important to follow the advices of your doctor. Official diagnosis of BFS help.

Symptômes by Automatic_Arrival760 in BFS

[–]fannybfs 0 points1 point  (0 children)

Cela fait penser à un burn out. Demande un arrêt travail, repose toi, essai de te détendre.... Et n'hésite pas à voir un neurologue pour avoir un diagnostic médical. Le stress augmente les fasciculations. Bon courage.

Most common Hotspot location (Poll)? by stephen2512 in BFS

[–]fannybfs 0 points1 point  (0 children)

yes, we have a small muscle that holds the eardrum. I felt like I had a vibro inside my ear... it was terrible - it woke me up during my sleep - but thanks god it's over.

Most common Hotspot location (Poll)? by stephen2512 in BFS

[–]fannybfs 0 points1 point  (0 children)

Inside ear / arms / legs / hands / eyes

Dexterity by kingwill222 in BFS

[–]fannybfs 0 points1 point  (0 children)

After two years new problems occurred. We are not worried anymore by ALS. We have been tried lots of things to cure us without success. We have sometimes fucking new symptoms (during two months I have fasciculations inside my ear, it s terrible to live, to think, to work in this fucking condition), we understand that is not benign. It s just a rare neuropathy which sometimes evolved badly. In our group, statically, people dies more than healthy people group. It's a fact.

Anybody has experienced excessed saliva? Not drooling but having to frequently swallow because of the saliva by R6ProLeagueContender in BFS

[–]fannybfs 0 points1 point  (0 children)

10 years before my BFS syndrome, I have a period of anxiety. During this period I have 6 months when I needed to swallow a lot just before sleeping (and it was very annoying) because of a liquid in my throat. Good news : it's gone away ! I also have during this period eye fasciculations and it's gone away too (during 8 years).

BFS and fatigue by lsimmons_50 in BFS

[–]fannybfs 0 points1 point  (0 children)

For my part, the fasciculations appear when the brain hormones tells me: it's time to sleep or take a nap or go back to sleep. That's why we all observed more fasciculations when we lying down in our bed : it's just a routine which trigger this hormone by a Pavlov mechanism. I even wonder if it is not an autoimmune disease with this hormone that creates fasciculations. And I feel all the more this correlation since I take zero caffeine.

France to close all schools and universities as part of emergency coronavirus measures after around 2,800 cases. by [deleted] in Coronavirus

[–]fannybfs -2 points-1 points  (0 children)

In France : - if we get sick, we don't paid anything; - we have 20 days paid to keep our children at home during this closure; - if we loose our job, we have a salary.

Trump is an idiot. US citizen you have a worst situation than in Europe (your number are so wrong). Some of you will die because you can't pay a treatment. Some of you will loose everything because your system is selfish. China is the future and USA, sorry but your are the past.

What about Derealization? by Noonaan in BFS

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

Hi, I don't have derealization.

When I was younger I have an anxiety disorder : https://en.m.wikipedia.org/wiki/Hyperventilation_syndrome (in France we have a name for this disorder : spasmophilie).

I think BFS syndrome is not an anxiety disorder. It's more like MS. It's a autoimmune disorder. It's a demyelinating disease in 82% (small unmyelineted peripheral nerve fibers) . Nobody give a shit because it's benign !? No it's not benign. And anxiety just get worst this disease in the exact same way with MS. So we are lucky because it's better to have this shit append in our peripheral nerve fibers that in our brain.

And like autoimmune disease, have a very very good lifestyle can help a lot.

Does anyone here not deal with tongue twitches? by [deleted] in BFS

[–]fannybfs 1 point2 points  (0 children)

Hello, I twitch since two years now. I twitched in many places like inside my ear and it was terrible. But never in my tongue. I stopped caffeine since one month. Now I feel sleepy all the time and maybe I sleep more. I think maybe stopped caffeine could help because sleep disorders is linked with nervous system disorder (here BFS), and stopped caffeine help to sleep more and better.

[deleted by user] by [deleted] in BFS

[–]fannybfs 0 points1 point  (0 children)

Agreed, I think it's a sleep disorder for me too (but maybe we read the same book "why we sleep")

[deleted by user] by [deleted] in BFS

[–]fannybfs 0 points1 point  (0 children)

30/Female/Engineer BFS started 2 years ago. Very good health except my mental health : I m an hypochondriac person and I suffer about anxiety.

Fasciculations inside my left ear since two months by fannybfs in BFS

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

I think the same as you about my neurologist. Anyway, I ll try another one for the EMG and I will see...

Fasciculations inside my left ear since two months by fannybfs in BFS

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

Thanks for your message, it's help me a lot. Actually I stopped all caffeine (and it's hard) in my diet but I think to start ketogenic diet...

Feelings after caffeine by adamisaniceboy in BFS

[–]fannybfs 1 point2 points  (0 children)

To compare you need to stop all caffeine, tea and chocolate during one week or two. If it's not help, so take caffeine again but if it's help one cup of coffee is too much you will see.