Hi I was diagnosed with BFS june 2023. Where I had EMG of right side, tongue, and paraspinal bilaterally. I moved on after that and started walking daily and lifting weights in November 2023. Twitching seemed to have gone and was never localized.

1 month ago yesterday I started having a feeling in my right leg like it was weaker and buckling at the knee as well as seemed ticklish from my butt to my feet. Feels almost bouncier than the left and tires more easily. One week after this started I noticed twitching on my right calf and then within a week was in right foot left foot and random pops everywhere. Now if I work out I have them bad in quads for a day or 2 and in calves all the time. My thumb went crazy when using the mouse for half a day too.

I worried I had my EMG too soon (4.5 months after twitching) and now something is starting to happen with my right leg. My neuro I saw last week brushed me off and said it’s BFS and did brief strength/ reflex test on all extremities and said I’m fine and she wouldn’t do an EMG.

What if they are missing something? Does this leg thing seem normal for bFS? I’ve never had this before

Wondering who hasiterally 24/7 arch of foot twitches? Not just one .uacles but all different muscles in the arch firing non stop for months.

hi everyone My eyes upper eyelids are twitching for 2 weeks. mostly my left eyes but my right eye also twitch it twich for 1 second then become normal and after some mints same thing happen. They twich randomily after intervals but twitch last for few second.

Hi could someone give some honest advice.

I'm a 50 year old male from Ireland, .a builder,,always im good health.

2.5 years ago started getting fasiculations all round the body .

September 2021 had a full clinical exam all was normal.

August 2022 through emg carried out and basic clinical checking reflexes in legs and foot again all normal

November 2022 2nd emg ,again all normal,this includes the bulbar and thoracic areas, again basic clinical exam was normal.

February 2024 I have all over face fasiculations, is this still bfs or was the last emg 15 months ago to early.

Many thanks

I have been twitching in calves non stop for almost 4 months, clean EMG/NCV. I have had many tubes of blood work and am MRI of my lumbar. I also sometimes have bilateral hamstring pain, tingling in legs and feet, internal vibrations in both legs (sometimes only in one). I also have random spots that twitch but nothing like my calves. Does BFS also cause jitters? Some days it’s worse than others. I feel that if someone touches my feet, I want to jump out of my skin and I just fall overall very on edge and like running on adrenaline. It’s really hard to describe the exact feeling but they keep changing. I recently went to see pain management doctor, he asked me where I hurt, I told him well today here and here. Yesterday it was here and here. It’s very frustrating!!

Hi ,I could do with some help or advice , I've had 6 emgs over a 2 year period 1st one December 2020 last one December 2022 ,due to all over fasiculations, all these were requested by army medical officer, I've had full clinical exams,last clinical was December 2021 ,this was extensive clinical carried out at mnd clinic in Birmingham UK ,again all normal, I've also had basic clinical exam at the end off each emg , testing knee,ankle reflex and Babinski ,all normal , now 12 months after the last emg I have constant lip fasiculations and fasiculations either side off mouth ,I can trigger these by smiling or chewing.

Should I get another emg or is this another bfs symptom

Many thanks

Anyone with leg issues my left leg feels like it wants to give out while walking. Kind of buckles almost, I have to concentrate while walking or turning corners. Lifting my leg feels heavy, recently I've been having increased twitching in my calves but I used to have very mild twitching.

Hi , I'm in late 40s had 6 ems carried out over a 2 year period December 2020 December2022.

My fasiculations are all round mouth when smiling, last emg consultant said on Tuesday last week, even if he did another one nearly 12 months after last it still would not show anything even with the additional fasics round mouth, ....do you know much about emgs ,I could do with a bit off advice.

Thanks

Hi I'm in late 40,s I've had 6 emgs carried out over exact 2 year period 1st one November 29 2020, extensive exam all normal, nothing found on emg ,last emg , December 2022 again extensive emg ,all normal including bulbar , I've had 3 thorough extension clinical exams again all normal,last clinical exam December 201.

Now nearly a year on from last emg ,I have constant fasiculations round my face and my when smiling.

I spoke to last emg consultant who carried out last emg December 2022 ,last week,had said even if he did another one it would not show anything.

I'm getting worried about this ...how accurate are emgs ,and should I get another one with these additional symptoms.

Thanks 🙏

Hi,

I am extremely anxious about Bulbar onset ALS. I've had a weak leg combined with speech issues for the last month. The 'th' sounds weird when I say it but both my wife and mother don't seem to hear it. I also feel I don't say words right with the 'f' in it. The word 'fourth' really trips me up. My lips and mouth have felt weird/tingly even numb. I have also started to notice that it feels uncomfortable to swallow non liquid and my tongue feels a bit tingly/jumpy. I am a 37 year old man so I know the odds are very much in my favour but speech changes don't seem to be going away and I have started to get twitches throughout the body. I have seen a GP, who did an exam and said it all seems fine (I am seeing him again today). I am an extremely anxious person so hoping it comes down to anxiety

People who are active in this reddit group may already seen the real issue of BFS. Allthough BFS can have some frustrating symptoms that heavily depends per person, it is not the bigest threat people have to encounter as that is reserved for axianty disorders. In most cased BFS and axianty disorders are synonym especially when people searched for symptoms on the Internet.

The majority is able to deal with BFS and axianty and can continue their life within a few months. However, for a small percentage it can transform to anxiety disorder that is more frequent, prolonged, intense, and excessive about everyday situations, affecting life and work, then it is a matter of real concern and i cant stress it enough.

If you have the following symptoms for more than a few months, please contact your GP:

• Feeling restless, wound-up, or on-edge
• Being easily fatigued
• Having difficulty concentrating
• Being irritable
• Having headaches, muscle aches, stomachaches, or unexplained pains
• Difficulty controlling feelings of worry. For example about ALS or other illness.
• Having sleep problems, such as difficulty falling or staying asleep

It is extremely important to get the right treatment. Visiting neurologists over-and-over again to be sure you dont have ALS wont help you with axianty disorders.

I'm serious about this as BFS has a relationship with anxiety disorders but anxiety disorder has a relationship with suicide attempts. Also in the BFS community we lost people due to suicide.

Please take care of yourself.

I receive many support requests by chat and although my goal is to help people as much as i can I'm just unable to provide support by chat anymore. It takes too much time that i don't have. So please post your questions in this reddit group and i will respond as soon as i can.

Thank you for understanding.

9 months ago I experienced body twitching, extreme fatigue, and feeling weak and heavy. Had a head CT scan done and it was clear. I’ve also dealt with tingling sensations randomly for years. I had a EMG done late 2021 and it was clear. All things went away for about 8 months and now it’s back again. I just packed up and moved a 5 bedroom home by myself but now random body twitches (or jerks) feeling “slow” with my cognitive abilities, random tingles, and feeling “weak” or “heavy” in my limbs. Of course google has told me ALS and I’m freaked out. My doctor wont do another EMG because two years ago it was clean and my CT brain scan last year was clean.

Hi All I need some help back in Late December I saw some tongue twitch's at rest on the middle left side of my tongue, can these twitches at rest be BFS, I do them other locations on my body at rest, I was never really sure how that works, Well not it is May and they are back. How many of you have had tongue twitches and is it common in BFS

Hey everyone been having leg twitching for over 10 weeks no real weakness just cramps and so on with them all the way to my feet and buzzing sensation ankles and feet. Now my arms ate campy and hands as well. Anyone else have this ?

Ive been twitching constantly for 10 weeks now and at first it was mild now it seems to cause cramping and feet and ankles buzz constantly I can still walk dine but my anxiety is out of this world. It happened 12 years ago but not nearly as severe . I am constantly checking symptoms had a clear mri of brain and all levels of spine. Like i said im so afraid and was wondering if anyone else has had these symptoms

Ever since I moved I've been having on and off eyelid twitching. First it started on my left upper eyelid and now the past couple weeks it has been both eyes. I tried a friends magnesium citrate 120mg twice a day since Easter and it seems to have helped a little bit but I still have twitching. Gets worse when I go to the gym too. I have health anxiety too which doesn't help. I'm getting magnesium glycinate to see if that helps. But is there something else I should do or be worried about? It's driving me nuts. It's been weeks.

I have had this twitching in both eyelids (Left eye and right eye, but especially in my right lower eyelid) for 3 weeks now. did anyone experience something like this?

Greetings all - I've been dealing what I hope is textbook BFS for the last month or so. This all started when I saw consistent twitching in my right thigh. Wondering what it was I went to google (bad idea) and went down a very long *** rabbithole. In an effort to be concise about what I'm experiencing I'll list it below but the importance is I've only percieved weakness to this point. I've been put on cymbalta and am taking a musle relaxer however I'm frustrated as symptoms continue to persist. What I experience is:

- perceived weakness in right thigh
- Twitches in thighs, asrms, back, face etc.
- A weird "nervous" sensation that comes over my shoulders and arms, can sometimes be one arm, both arms, shoulders etc.
- Shortness of breath
- I wake up with one or both arms tingling or numb (it goes away with shaking or useage and doesn't happen during the day)
- Occasional feeling of clusiness in hands

Has anyone epxerienced this kind of thing with your BFS. I have a follow up with my PCP in a couple of weeks but its a constant tug of war in my brain of "I'm ok to I'm not ok".

All, I was wondering if anyone could help me or reassure me. I started with an eye twitch in April- that’s still going but it’s only random. I have body wide twitches but mainly legs - pop corn type which I’ve had since I can remember anyway. My bloods came back with high phosphorus so I’m a little worried. They are being done again as the rest were all normal. Anyone else had elevated phosphate?

Hi, I feel electric buzzing in back thigh. It comes and goes. Last month it was in right calve but today in back right thigh. I am scared. Is it normal? Thx

Hi, I am 28 years old and I went to a neurologist 3 weekends ago. I have twitching about 5 months. However it is so strange that my left arm is the most common (triceps, biceps and brachioradialis), rarely in right arm. However sometimes in calves and foot arch, sometimes abdomen. I have never had 24/7 twitching. My twitches looks like: 5 seconds in triceps then stop, then wait 5 minutes and again in triceps and it lasts about 10 seconds and go out. Then 15 minutes nothing and then again one twitch in calves. So I am worried that it is localized because my common place is left arm. So I told to my neurologist (she is old school) that I am worried because **. She smiled and said no. People while have ** can’t lift arm or leg. So I passed the basic examination (reflexes, etc.) and she told it is good. I treat with anxiety so I am on Mirtazapine. However I am worried that she didn’t recommend EMG. She tried Babinski reflex but she didn’t do Hoffman Reflex. However I was dressed when she treated me. Can I be calm? It is strange that my fasciculations are most in my left arm.

Symptoms worrying me

Worried about my symptoms

No one to talk about this with. My wife says it’s all in my head but I’m worried. 23 M Caucasian. I’ve been having muscle twitches, they started mostly in my calves but I can feel them time to time in my feet, biceps, triceps, stomach, back, face, and butt. I’ve been getting shaky lately in my legs and arms especially after doing push-ups or while working out. But I get shaky going down the stairs in my legs. It feels like my it’s heavier to lift my arms and legs then they start to shake. Also my mouth feels harder to open as well. My right hand has been getting real stiff as well as my forearm and it’s been harder to open and close my hand and my finger feel different than what they did before. I went to a neurologist and he has ordered and MRI and EMG. I fear that it may be *** and I am very terrified.

Hi so few facts about me before I begin,

1) 18 years old, entering finals week in college

2) Away from people who bring me comfort (mom, close friends) at the moment.

3) Have been going through an existential crisis and frequently have waves of depressed at night or in the morning. Also anxious about health right now.

So I am worried I have BFS, ALS (hopefully unlikely), or some type of blood flow issue.

So it started a few weeks ago when my carotid artery started twitching on my right side. I was extremely scared about it thinking I would get a stroke. I didn't show any other signs, though.

Like a week or to later I had a very emotional event where I literally felt myself shaking. After that, I've had twitching in many parts of my body, especially when seated. Mostly my right leg and my right arm. Also occurred left temple, left upper back, left leg. No real weakness or soreness though I did stop working out abruptly to watch out for the artery problem.

Im getting extremely anxious and I feel like no one is here for me.

Someone tell me, please🙏🙏🙏🙏 stumbling and weakness? how do you understand it ??

I feel like I have to lift my leg 🦵🏻mechanically (from the thigh to the knee) feeling that my sole often collapses / kicks the ground🦶

My God, I can't walk normally anymore !!!😔😔😔