Welcome! Exploring ALS Fears

[krautknacker]

Hi guys,I'm a 24 year- old female and new here in this forum. I'll try to explain my story shortly. It began in September this year after a long stressful period when I first realized twitches all over my body. It drove me insane since I stupidly googled my symptoms and like most of you ended up on an ALS- Site. I never experienced a fear like that so I went to the neurologist who ruled out the disease after a clinical exam and an EMG. Since the beginning the arche of my feet were twitching 24/7, sometimes it's worse on the right, sometimes left side. Two weeks ago I had something like a slow frequent cramping which was hardly felt on the right foot that lasted only two days. Since a week or so I have kind of a very fast fine fluttering on the left arche, which now stays constantly in the same place and increases rapidly after I splay my toes or walk around. Meanwhile the Over- All- Twitching became less. Although I thought I was quite done with worrying bout MND I now become a bit worried again.. It's just difficult to me to cope with that variety of twitches. How are your experiences with different kind of twitches? Is that what Bfs'ers call a HOT Spot? Could someone describe what's a Hot Spot like? Sorry for bothering you with that, but BFS is a very unknown diagnosis in my country as my doctor just asked: "If this would be a very common diagnosis, how comes I never heard or read of it in any scientific magazine?" Thanx for your replies in advance! Greetings

 

[Savanturn]

Your doctor never heard of it? I cant believe it, every neurology book mentions benign fasciculations, however they are not diagnosed as a disease. Also, what you have by his oppinion? What did he tell you about your twitching?By your nickname I guess you are from Germany or so. I was able to find out a lot of info about BFS in Emilyomouse.Im VERY similiar case like yours. Mine twitches started after stress period and during stressful time (university exams, personal problems...). First EMG - negative after 4 months, second, negative after 1,5 years.Im still not diagnosed with anything than increased muscular irritability / probable metabolic disorder.I have them in my left arche for more than month, besides random ones mainly in my arms, shoulders...What do you your twitches look like? Single in one place, more in many places in the same muscle...?Hot spot is term we use here for place that twitch constantly..

 

[krautknacker]

Of course my doctor knew about benign fasciculations, but she didn't know about BfS or Bfcs. She thinks my fasics are anxiety- related and a result of enormous inner exertion. For instance while the EMG in my right foot as she tested a muscle close to the ankle you could hear and see frequent peaks and a kind of frequent knocking that wouldn't go away when exercise the foot. Nevertheless it disappeared after she told me to do a simple strength test with my hands while the EMG. This was weird and of course insecured me but for her it was reassuring that everything was normal. Did this ever happen to you?May I ask you where you found information in Emilyomouse as you assumed right about my nationality? Do you experience any other symptoms apart of twitching? My arche of feet just seemed to be very lively as different parts of what I suspect one muscle twitched. They were mostly lots of single ones. Since a couple of days, what I already wrote, it stays permanently in exactly the same place, is very subtle and fast, looks like the muscle is fluttering or trembling. This is new for me as I never experienced that before but of course I'm focussed on my feet, so I wouldn't even realize if it was somewhere else. There are still random ones in back, arms, calves, knees and so on, maybe the tongue as well, but it only moves as I look in the mirror so I don't know if this isn't just a normal condition. It really helps to know that there are more people with my type of symptoms especially if I read you have it for years now! Had my first EMG done after 6 weeks of twitching which was clean, and a second one in decembre after I begged my doctor to check my arche of feet as well since they were most affected. Hoped that this would reassure me that eveythings ok but unfortunately I still can't really let go. Did I post to the wrong forum by the way?

 

[Savanturn]

Lol, I experience just the same. Foot twitching, very subtle and almost in one place (just in the muscle abductor hallucis) and random ones in the places you have mentioned. I have too EMG placed right to the twitchy foot muscle - it was silent except knocking- I was told these are action potentials.No, I have no other symptoms except the twitching.About anxiety..this was my first concern too, it would fit if I had sporadic twitching, but I doubt continous foot twitching is due to anxiety.About information in German: I just googled "muskelzuckungen" and benigne.PS: There is a video of my twitching..it has changed now (its faster and more subtle), but generally looks same: (begins from 0:10)