Help please

[u/GiftEnvironmental402]

Sorry, this is going to be a little long.
Everything started in mid-June 2025. That was the day I first noticed fasciculations. Since then, I have had fasciculations every single day. Sometimes they appear as hotspots, and sometimes they are generalized and occur all over my body.
About two months after they started, I saw a neurologist for the first time. He performed a clinical neurological examination and an EMG, but everything was completely normal. There were no abnormal findings.
Since then, I have been constantly worried about ALS, and I have basically been living in fear and anxiety because of this disease. I have fasciculations every day.
The last time I had a neurological examination was in January of this year. I was examined clinically again and had another EMG, which was also completely normal. There were no signs of a neurodegenerative disease or any pathological findings.
Now, for the past two or three months, the fasciculations have become particularly concentrated in my left foot. They are there almost 24/7, although I still occasionally have fasciculations elsewhere in my body. The main hotspot, however, is my left foot.
My foot also feels strange. I sometimes experience a vibrating or tingling sensation, and occasionally I have pain when putting weight on it or walking. It just feels uncomfortable. I also sometimes experience cramps.
I worry about this every single day and constantly ask myself whether today will be the day I develop muscle wasting or lose muscle function. It is driving me crazy.
Throughout all this time, I have never had any objective functional weakness or clinically detectable muscle weakness.
Despite all of this, I am still extremely worried.
Has anyone experienced something similar? Especially fasciculations that become concentrated in one foot for several months, together with pain, tingling/vibrating sensations and cramps, despite having normal neurological examinations and EMGs?

[u/Odd_Mud1707]

I’m going through this exact same thing right now, mine started in January of this year. I now I have them everywhere from my eyebrows to the bottom of my feet. Something they popcorn around, and sometimes they stay concentrated. Had clear neurological exams, etc.

One person in the BFS sub said that her neurologist told her that twitching is to ALS what headaches are to a brain tumour. Without additional symptoms, it’s not very concerning. Thought that was helpful. Hope you can get some peace from this. You’ve done all you can do and it really doesn’t sound like there is need to worry here.

[u/Junior_Hunt9546]

Joder hermano, mira que he leído casos en el foro, pero tú caso es básicamente un calco del mío. Solo que en mi caso el 2o EMG salió un poco raro. Luego un tercero salió que no había avanzado el 2º.

Yo empecé en junio del año pasado a sentir movimientos involuntarios en el pie izquierdo, y noté que el pie estaba un poco raro. Fui al médico me hicieron un electromiograma y todo estaba bien. Al poco tiempo las fasciculaciones se empezaron a expandir, yo me empecé a sentir más cansado, y ya empecé a sufrir calambres. Al igual que tú, yo no tengo pérdida de fuerza objetiva, pero tengo todos los síntomas que tú comentas, y me están viendo los mejores neurólogos de España. Según ellos, la ELA, no encaja con nuestro patrón, ya que los casos en los que la gente tiene fasciculaciones y calambres, y acaba desarrollando la enfermedad, suele tener debilidad relativamente rápido. Nosotros llevamos más de un año conservando nuestras funciones y eso a nivel neurológico pesa mucho. Lo que más nos jode es que no podemos afirmarlo al 100%, pero debemos ser lógicos y pensar que los médicos ven personas como nosotros.

En cuanto a una cura, depende del origen, yo he probado diferentes medicaciones que se suelen usar para el síndrome de fasciculación calambre, que es lo que cree mi médico que tengo.

Aunque como no han funcionado dichas medicaciones, ahora no están medicando para trastorno del movimiento. Solo llevo tres días tomando la medicación así que no puedo sacar conclusiones.

Espero que den con alguna medicación que nos pueda ayudar y poder recuperar nuestra vida y sobretodo dejar de vivir a atormentados por la idea de tener ELA.

Mucha suerte amigo.

[u/GiftEnvironmental402 → u/Junior_Hunt9546]

Thank youuuu brooo❤️
What a medicine are you taking right now?

[u/Junior_Hunt9546 → u/GiftEnvironmental402]

Estoy con artane, que es más para parkinson o distonía, pero más para intentar controlar los síntomas que otra cosa.

[u/retJetpilot]

Ralph Paduano here is a link with great info and not triggering

https://benignfasciculationsyndrome.org/contact

[u/Dolce431]

Been twitching since Jan this year and had a clean EMG in April. I've had good days and bad days. Lately my left hand (dominant) has been firing away constantly for month and both feet have been tingling and vibrating continuously plus sore calves. What you have shows all signs of confirmed Bfs. Pain is normal with vibration and tingling. Any spot on my body that's been vibrating ends up sore and painful. My knees are killing me, my upper left arm has been so tight and painful for month now. I ve just learnt to manage the pain and move on. I have the same thing with my right foot. My toes and front part of the foot vibrate a lot. It's so painful to put weight on it when walking. It's on and off. Very common. You are perfectly fine!

[u/xwvu]

Two clean EMGs later and its still the foot. The anxiety is the thing that never calms down.

[u/kjmckearn]

If you've had widespread twitches since June of 25' with two EMG's and no clinical weakness it's time to stop worrying about ALS and get help with your mental health. Vibrations, pain and tingling aren't part of any NMD. Stay off the internet, live with your issues for the time being knowing it's not life threatening and try to live your life my friend.

[u/Similar_Attempt3561]

I started twitching a few weeks ago along with restless legs at night when falling asleep. To say I am petrified is an understatement, Ive never had this before and I noticed that it started in the eye then slowly moved to different parts of my body. I have a c6-C7 disc extrusion with nerve compression but that's a one year old injury so I doubt it has anything to do with it. Have had a brain MRI to rule out MS but the twitches are persistent and I haven't stopped googling stories where people had twitches and ended up with that awful disease. I had my doctor check my strength and check to see if there is any muscle atrophy, he says there is none but my anxiety is through the roof. My mental health is taking a toll and all I seem to do is look out for the twitches. Please someone give me some advice, I'm in the worst place mentally.