Constant Fasciculations Worries

[Karen92]

Hi everyone,I am very glad to have found this forum. Like many of you, I am petrified about my constant fasciculations. I am a 39 year old woman and have been having what I feel are severe fasciculations since February. I had this once before, in my early 20s and went to a neurologist who did a few strength and neuro tests in her office and told me I had BFS. Over the years, especially during my 3 pregnancies, the symptoms would flare up. But in February of this year things got crazy. It started with a very large and persistent twitch in my right shoulder/bicep that was clearly visible through my clothing. After about 5 days that settled down but the twitches are now everywhere and have been for months. There is literally not a 5 second period during the day in which I do not feel (or see, if I look) a twitch. They are frequently in my calves and feet but also hands, arms, thighs, tongue, back, abdomen, lip, cheek, eyebrow, eyelid. All day, every minute of every day. As I wake up in the morning the first sensation I have is my legs and feet twitching.I have a history of health related anxiety so was embarrassed to see my general practitioner and kept hoping it would go away. Yesterday I finally went in to see him (after overdosing on ALS sites) and he seemed quite concerned. He ordered a bunch of bloodwork which all came back normal and has referred me to a neurologist. I don't have any problems with strength that I have noticed. In fact, I have been doing regular yoga for the last year and have noticed no changes or difficulties. But I am still absolutely beside myself with worry. I believe that I have ALS and am very frightened to see the neuro for confirmation of that. I do know someone (not a family member) who died of ALS 4 years ago. He only lived 18 months after diagnosis. I have three small children to take care of and I am petrified that I will die from this disease.

 

[KnottyPirate93]

Okay, the first thing you need to do is RELAX, and stay OFF the ALS websites. They are not positive....and there are frequently things on there intended to scare you. As I'm sure you've read here, ALS is rare, more rare if you are female and extremely rare in your age group. So, with that being said......what you have sounds a great deal like BFS to me. From what I've read on here, as well as my own neuro appt back in January, ALS VERY SELDOM presents with twitches, somewhere in the neighborhood of 2-6% of the time. The rest of the time it is weakness which steadily gets worse, and the neurologist picks up the fact that the patient is twitching, not the other way around. What "we" have, is a hyperexcitability of the nervous system which causes horrible symptoms, (the twitches can sometimes be the least of the symptoms), and whose cause remains a mystery. My neuro believes it is triggered by a virus, and I did indeed test positive for West Nile Virus. It is exacerbated by anxiety, which is another common thread on this board. I do NOT believe anxiety causes this illness, however, it is made much worse by worry. Just like anxiety will make existing migraine's worse, or existing gastric problems worse, this is no different. Widespread twitching is almost a good thing.....as it is more localized with ALS. I too know someone whose father died from ALS, and it began in his thumb. Make an appt with your neuro, have the EMG done because it is very reassuring, (doesn't really hurt all that bad), and get on with getting better. You will find that I will be reassuring today, and terrified tomorrow. It's the normal progression of this illness, especially when very new. You will be fine......Also, PM sparkrlock or kit if you are VERY scared. They are a wealth of information. Hope I've helped you....Shauna

 

[Karen92]

Thanks Shauna,That is reassuring. I will try to think about and believe what you wrote but it is really hard.I have spent the whole day doing strength tests and watching my biceps, forearms, palms, shins and calves twitch constantly. I have to wait until June 26th to see the neuro. It is going to be a long wait. It is very hard to believe that this is a benign condition.

 

[SandyAnn]

Hi mamakaren,I have been twitching constantly since mid sept last year! 24/7 in my calves and random spots elsewhere. I visited a neuro at the end of March and he said that when I walked in he could tell that I did not have ***!! He performed a very thorough clinical from which I was very reassured! I am also 39 years old and a mum to 3 great kids so the thought of having something serious was very, very scarey!!Sounds like you are just like me and I am so sure you will be fine!!Twitching on its own is VERY benign!!Welcome to the forumSandra

 

[Quickrider]

Hi mamakarenLike you, I was freaked out over my fasciculations, but when I went to the neuro, he did not even look at them. It was all about strength, reflexes and atrophy. He was not interested in the twitches.Sandra D

 

[cindyandco]

Mamakarin: I have been consciously aware of my twitches since November of 2007 and my anxiety got so bad that I came close to a breakdown. New Year's day was a turning point for me. I have not seen a neuro, but have a good GP and a very psych. Neither think that I need to see a neuro (I really wonder if THEY are the crazy ones here, after all this just ain't normal). Anyway, I still twitch, but with the help of some anxiety meds, the twitching is a lot quieter. I have had vibrating, burning, buzzing, fluttery twitches, big whopping twitches, you name I've had one. When I first had a tongue twitch, I nearly flipped. It lasted a couple of weeks and moved on. Now I feel it every now and then, but the most of my twitches are legs, calves and feet. At first it is SO hard to believe that this awful feeling could possibly be benign, but it can and is. Reading your post I don't believe that you have anything sinister---just unpleasant. Once you come to grips with that , the unpleasant becomes bearable.Saying a prayer for youCindy