A note of reassurance

[Gazman86]

Great post Just what i needed to read as i'm quite new to this and just hit the 6 month mark.

[tamburia2]

great post!!!

thanks ....

Ciao dalla Liguria!! (italy)....

[lilithgrrrl]

Its funny/tragi-funny that a lot of health care workers get it, because I'm a premed student applying to med schools right now, and I just got it in June. Even though it is benign its still super freaking annoying. And my doc doesn't want to give me meds because he says I'm too young. Urgh!

[Buzzmike]

Good post. I concur 100% with what you've been told. As a speech pathologist with 25 years of experience in a large hospital based rehab facility I have personally referred around 8-10 patients with symptoms of bulbar ALS that were later confirmed, the most recent being 3 weeks ago--and my suspicion was was correct. It has never taken more than 3 months to get a confirmation. ALS presents with progressive unrelenting weakness. I've seen fasciculations, but not always, in weakened patients, but it is definitely a secondary symptom. I've never seen a patient with ALS whose primary symptoms were fasciculations. Progressive profound extremity weakness, progressive profound dysarthria (speech disturbance), and increasing difficulty with swallowing, until all motor functions essentially shut down--usually within a year. I've never seen anyone go for even close to a year without obvious and disabling symptoms. Ease your minds. Check off the months without a marked clinical increase in weakness--not perceived fatigue. We have BFS which is problem enough. We do not have ALS. By the way lilithgrrri--you're right--it is most common in health care practitioners. Now that is a *beep* mystery.

[jam3276]

Thank you so much! for the neuro info you posted...I am so nervous...I have a meeting with my neuro tomorrow..I have been doing everything from measuring my squat fatigue to standing on one leg on my tiptoe and seeing how long I can do it (very hard)..I started by having a rolling twitch under my knee cap..At the time I was stressed, but more importantly I had been doing a lot of circuit training and training for a 5 k..It has been almost 3 weeks now...I have essential tremor as a diagnosis..My twitches go from my knee to sometimes starting higher on the thigh...I am really praying for good news at my clinical exam tomorrow...but I am considering doing an EMG just in case...So scared..Thank you thank you thank you..

[Lasszucken]

I've just been to a follow up appointment with my neurologist.
Everythings fine, and as a last questions i asked him, why never was interested in my twitches and he even never look at them?

He replied:
Because im not intererrested in your twitches. In my 20 years as a neurologist there has never been a patient with ALS coming to me because he has noticed the twitches. And I've seen a lot of ALS patients the years i worked at the University Hospital.
Twitching alone means exactly this: NOTHING.

Greetings,
Lasszucken

[DonaldD2]

This place is a godsend for people like me. Everytime I twitch I go beserk thinking to myself "Oh god this is it my life is over" and then I run to the doctor only to pass a neuro exam. No EMGs but they all keep telling me I don't need one. My advice to everyone(I'm sure you've heard this before) stay away from Dr. Google. He doesn't help anything he only makes it worse. I really want to know what's the best way to manage this? Because it's not only annoying for me but its really distracting especially with the parathesia and joint popping.

[Adamk]

I have noticed improvement of symptoms after reducing the amount of ambien I have been taking. I have been on ambien for 4 years taking it every night and I think long term use of z and benzo meds can be a cause of bfs. I would bet that allot of us were on some sort of these before we developed symptoms. I am getting rid of that junk in the hopes my brain will go back to normal someday. I used to take 15 mg every night and I am down to 4mg now. The twitching isessened and does not hang around long. It will even dissapear for hours at a time now. I have been twitchy for 2 months now.

[Chris swl]

HI

Good post. I joined here in 2005 and pop back to help people with fear. I am now 100% fine after many years of unbelievable symptoms. I was pleased to hear BFS is been taking seriously, as my neoro looked at me like something on his shoe, he said. "You cant be in pain you have nothing wrong, clear your head and you will clear your pain" he knew nothing of BFS.
YER! I felt pain. In my head or not the pain was there.
There is and end to this bfs thing and I am the proof.

Cheers Chris

[Anxious guy]

Thanks for taking the time to write this post.. It helps us all get an informative perspective from experienced professionals.
A lot of us are anxious and stressed about symptoms, reading stories like this helps.
Thanks
Paul

[stucharlie]

Hi, I'm new to this board.
I'm 21 male from the UK.
It all started about 5 months ago when I was told I had a sinus infection, by 4 different doctor, I had severe brain fog and just dizzy and not feeling my self. A month went by I was a bit better but not 100%, I got given three weeks of antibiotics still no difference. A few weeks went by and twitching started behind my left knee and suddenly I got twitches all over, back, bum, calfs , feet . I looked online and though t *beep*. I went back to the docs who did a reflex check and said that's fine. The twitching has been going on for 3 or so months and I'm worried sick, the doc said it was anxiety and gave me venafaxine but the twitchin is still here, all over but more so in the legs and feet. It stops when moving and I sometimes get buzzing and a slight tingle. Almost feels like something under my skin but more recently aching calfs that come and go. I worry so much and I even watch my self walk encase I trip or stumble. Can anyone give some reassurance? Thank you , p.s blood test came back normal.

[jebmd]

Hi there,

Been there, done that! And I'm more than twice your age which means more to worry about! I found it the most helpful to simply go through the proper steps to determine the origin of the "twitching". Antidepressant (Venalafaxine in your case, Celexa in mine) made my symptoms worse and so I quit taking it. My twitching began after a very bad viral infection and instead of resting I continued to work. I had my family doctor test my strength and reflexes all OK. Of course being a doc myself, I had done much strength testing on my legs but I cannot do my arms myself so she did it. Bloodwork showed anemia, B12 deficiency, Vit D deficiency all corrected now. I got an MRI of the brain and spinal cord to rule out MS (normal) and insisted on an EMG to rule out ALS-also normal. I will be having another one in 4 weeks on my other arm and leg although the neurologist is doing it to humour me. I suggest that you read the post by Dr. Will in the "Experiences with BFS forum"-I found it calmed me down a lot while I was going through the testing. You have twitches all over, following an infection, you're 21 and you have no clinical weakness plus some sensory sensations “buzzing”-unlikely to be ALS. If you need more reassurance, then get the testing done. I have found that since the normal EMG on Dec 18, my twitches died down significantly. They increased again in January because it was a very stressful month and have now died down again to barely noticeable. The best thing you can do is get the FACTS-then you can deal with them appropriately. I have been living with this since the end of September and have noticed no loss of function-the only thing that helped was to really know what I was dealing with and to deal with my anxiety by seeing a therapist. I have a stressful job, a kid in university who is having her own set of mental breakdowns (seems better now thank goodness), another kid who struggles in school and needs HOURS of help to cope and a husband who's job has been even more stressful than usual lately!!! A perfect recipe for BFS if ever there was one. I have changed my attitude and try to enjoy what I can and not worry about what I can't control. You can control your diagnostic investigations, so do so if you think it will ease your mind. It is the only thing that helped me.
J