Constant twitching

This forum is for posting your personal experiences with BFS: symptoms, doctor visits, fears, etc.

Please use this forum to post give and recieve encoragement and reassurance from sharing the trials and triumphs you have faced.

Moderators: JohnV, Arron, garym

Re: Constant twitching

Postby Amylou29 on January 9th, 2014, 3:45 pm

I found it and read it, thank you for your help very worried. I think the main thing worrying me other than the perms any twitching in my thighs and knees is this muscle soreness I am having mainly in my left thigh. Even without exercise!I cannot understand why this is happening and why I have it every day,I've searched and from what I've found, no other bfsers seem to have it on a daily basis! Thanks for your help
Amylou29
Selfless giver of time
Selfless giver of time
 
Posts: 160
Joined: August 14th, 2013, 3:12 pm

Re: Constant twitching

Postby Amylou29 on January 10th, 2014, 6:13 pm

Very worried, the fact that there have been no response is what worried me, my chronic thigh soreness and constant twitching isn't the norm for bfs.
Amylou29
Selfless giver of time
Selfless giver of time
 
Posts: 160
Joined: August 14th, 2013, 3:12 pm

Re: Constant twitching

Postby veryworried123 on January 10th, 2014, 7:02 pm

i really dont think you have anything to worry about. i've heard on many senior members with those same symptoms. Is there any way you can get an earlier emg rather than wait? Can you go somewhere and pay?

Here's a couple of my favorites quotes and responses to some of my questions:

1) is it true that I or a person has to wait for 4-6months or longer after fasciculations start to confirm for sure that this isn't als or anything nasty? When is bfs really confirmed? My Nero stated its bfs but i need another emg in 6 months to be sure. Are there cases where people had a normal emg with fasculations that months later developed something nasty?

Answer: Not true. The 4-6 month time period only gets mentioned because some believe that if there WAS ALS that in 4-6 months it would be very obvious (if there was some uncertainty to begin with). So why does the 4-6 month time period NOT apply to you and I? Simply because we have a symptom pattern that cannot be produced by ALS. I've been reading about BFS and ALS for years, have heard/read loads of feedback from top ALS experts. What we experience is something different than ALS, without question. The source of our symptoms (whatever it is) is benign. And if we already know that ALS cannot be the cause, then why does the "waiting period" matter to us? It doesn't. :) Over 4 thousand people have come through this community and NOBODY with our symptom patterns have resulted with ALS. It can't happen because nature doesn't allow it. ALS is bound by nature to act in certain ways and CANNOT act in certain ways. Many neuros will ask for a followup as a rule of thumb. My neuro also told me to come back in 6 months. That occurred over 8 years ago and I never returned. ;)

That's crap. ALS doesn't hide. Its easy for any neuro to pick it up. These stories get very convoluted. Think about it, if you were diagnosed with something today and someone asked you if you ever noticed twitching, you'd say 'yes'. Why? Because everyone twitches, whether they notice or not. I asked my neuro about people with ALS whose first sign was twitching and he said, "If that were the case, they would never pass a simple clinical exam, even if they didn't notice any other signs".

No need to wait - according to the 4 Nero's ive seen who are all top


Does it matter where you twitch and how much and what type of other sytopms you have like cramps?

Absolutely not. I can tell you that you can have nonstop twitching in all 4 limbs, your abdomen, and your tongue and it doesn't mean a thing without other clinical signs and true weakness. I know because that's what I have. I was able to walk into the Mayo clinic and show them fasciculations in all limbs and my tongue. Guess what, they didn't even think it was necessary to EMG me. But I insisted and they did the EMG. Fasciculations were detected in 8 out of 9 muscles along with insertional activity. If you google that, you'd think I was doomed. But in reality, it is as benign as it gets. I have areas that have twitched for months without stopping. At the moment, my calves and feet are going, my elbows are twitching (19 months), abdomen (10 days), cremaster (google it, very uncomfortable... 6 weeks)

Constant twitching in one area for extended periods of time is of no concern and commonly happens in BFS. In your twitchy career you'll likely have multiple areas that constantly twitch for days/weeks or even months. Location means nothing. You will quite possibly twitch in every muscle eventually....I think I have. Thighs?...lmao. What a joke. No knowledgeable veteran or neuro would say this situation is more concerning. In fact, if you search the forums long enough you'll likely find a number of types of twitch that one or more people (newbies) believe to be more concerning. Twitching, itself, is meaningless. Location, size, frequency, etc. of meaningless twitching is.....meaningless

In some rare ALS cases, twitching can be noticed before weakness is noticed. However, those cases have nothing to do with us and are clearly different in terms of symptom pattern. When you get into the details of those rare cases, they are night and day different than you and I. Its no coincidence that over 4000 of people with our symptom patterns have been through this community and 0% have panned out to be actual ALS victims.

Whats the best way to get over all this BFS?

Getting over BFS and ALS related fears/anxiety is harder than anything else I've dealt with in my life. Some people have battled it for many years because their minds are unable to wrap themselves around the truth. Some have lost jobs, friends, spouses, etc. simply due to these irrational fears. Don't let yourself fall victim to the same.

mayo told me "Anxiety didn't cause this condition, but its like pouring gasoline on it. 90% is mental


The key to getting over this is to realize that what I said above is true is absolutely true. You can have all these symptoms and its absolutely benign. Its way more common than you think. Lots and lots of people have this. Everyone has twitching, but its been estimated that 2% of the population twitch to the levels of a syndrome (BFS).


the best advice i can give you is to get back to living your life and stop worrying about bfs (i know easy said, hard to do). you've done the right thing by seeing a neuro and having an emg. remember that the fact you had a normal emg, assures you that you don't have anything sinister. an old saying around here is that it's not the fasciculations, but the company they keep that is concerning. that means fascics without weakness or other changes on emg are absolutely benign. one last thing, we have never, not one time, had a member go on to develop als that had a normal emg. you can rest easy based on that fact.
veryworried123
Hero
Hero
 
Posts: 303
Joined: December 10th, 2013, 2:28 pm

Re: Constant twitching

Postby Yuliasir on January 11th, 2014, 12:46 am

Amylou, having persistent twitches involves soreness becasue it is nonstop involuntary activity.
BFS also starts or increases so called excersise intolerance at which myalgia comes several times faster and muscles are much more fatigued than in average person. I am renewing my sublest home sports now (8 minute Jamie's workouts) and I can not fulfile them becasue after several excecises I am so tired I can not literally rise my legs etc.
User avatar
Yuliasir
Saint
Saint
 
Posts: 2952
Joined: March 3rd, 2012, 1:42 pm

Re: Constant twitching

Postby shell67 on January 11th, 2014, 10:51 am

Amylou,
Read Xina535's post under Symptom Management. She talks about pain in her left thigh. I hope you find some relief. Please try not to worry. A lot of us have had persistent aches/stiffness/cramps -- it's all part of the BFS package. I had a sore thigh for a while, now I have an achy/crampy calf muscle pretty much every day. For whatever reason, BFS seems to prefer my left side. As long as you can do your normal activities, you're fine!

God bless,

Michele
shell67
Senior Member
Senior Member
 
Posts: 79
Joined: September 12th, 2013, 1:25 pm

Re: Constant twitching

Postby Amylou29 on January 12th, 2014, 9:17 am

Thank you all for the reassurance. Very worried, what did they mean by " they ate day and night different to ours"? Is it a figure of speech or do they mean they twitch day and night? Xx
Amylou29
Selfless giver of time
Selfless giver of time
 
Posts: 160
Joined: August 14th, 2013, 3:12 pm

Re: Constant twitching

Postby veryworried123 on January 12th, 2014, 4:04 pm

It's a figure of speech
veryworried123
Hero
Hero
 
Posts: 303
Joined: December 10th, 2013, 2:28 pm

Re: Constant twitching

Postby Amylou29 on January 21st, 2014, 12:48 pm

Hi all, just to say I saw a neuro on saturday, dr mazibrada. He had a cancellation, he did a clinical exam and said no need for a emg, I told him my worries and he said no it's not that. He didn't seem like a talker so he didn't really elaborate on any thing, he was very nice and said to go back if any thing got worse, just wanted your views on not having an emg? Thanks. Xx
Amylou29
Selfless giver of time
Selfless giver of time
 
Posts: 160
Joined: August 14th, 2013, 3:12 pm

Re: Constant twitching

Postby Gamindsoc1509 on January 22nd, 2014, 6:17 pm

Amy, I have read the whole conversation and I have noticed one thing.

You are more than 8 months in and you had a neuro say you're fine?

Based on one of the worlds top ALS professors, he said "ALS very very rarely starts with fasciculations" and to be honest, by the way he said it, it sounded like he even had probably no experience this but was going off other information potentially.

His words were that if you go 8 months without any clinical features arising, you do not have ALS. Now you must understand, he has already basically said it's not ALS just from twitching alone as long as a neuro has looked you over and said your ok. This is just a further point to allow for any potential crazy scenarios to arise.

So as I said, you are 8 months in and have seen a neuro. Let is all go. I am 4 months in and my goal is to wait to 8 months, see a neuro and leave this *beep* behind me.

Good luck
Gamindsoc1509
Senior Member
Senior Member
 
Posts: 96
Joined: December 11th, 2013, 9:10 pm

Re: Constant twitching

Postby Amylou29 on January 23rd, 2014, 9:11 am

Thanks you for replying, I agree with every thing you've said. I think the hardest thing to understand with this is the difference between clinical and non clinical symptoms. For example,I have painful cramping and soreness in my left thigh and knee area, is this classed as a clinical symptom? I don't know.xx
Amylou29
Selfless giver of time
Selfless giver of time
 
Posts: 160
Joined: August 14th, 2013, 3:12 pm

Re: Constant twitching

Postby Yuliasir on January 23rd, 2014, 11:37 am

not between clincial and non-clinical symptomes but between clinical and perceived weakness.

clinical symptoms are obvious at ckinical exam and tell the doctro about significant damage of neural system: loss of reflexes, exaggerated reflexes (due to hyperexcitation at the base level of reflex - at anterior horns or at the central brain, as we have most probably hyperexcitation of mucle cell membranes, which is different case), spastic or weak paralysis, or clinical weakness which is inability to exert even a small effort like move doctor's hand aside. usually clinical weaknes is not accompanied by feeling of something wrong and people just say (often badly surprised): I just cant do that!


pain, tingling, even cramps are nmot clinical weakness and are not usually characteristic for ALS onset, and even if so, they are accompanied with other changes seen on clinical exam.
as your exam was Ok, you are cleared despite on any pains, cramps etc.
User avatar
Yuliasir
Saint
Saint
 
Posts: 2952
Joined: March 3rd, 2012, 1:42 pm

Re: Constant twitching

Postby shell67 on January 23rd, 2014, 12:41 pm

Amy -- great news about your visit to the neuro! I'm sorry you didn't get to ask him more questions, but the fact that he doesn't feel the need to do an EMG should give you peace of mind. I wish you well!!
shell67
Senior Member
Senior Member
 
Posts: 79
Joined: September 12th, 2013, 1:25 pm

Re: Constant twitching

Postby Amylou29 on January 23rd, 2014, 1:12 pm

Thanks shell and yuliasir, your help and advice over these last few months have helped me no end, very worried and RGB yours too. This forum is wonderful xx
Amylou29
Selfless giver of time
Selfless giver of time
 
Posts: 160
Joined: August 14th, 2013, 3:12 pm

Re: Constant twitching

Postby Amylou29 on January 23rd, 2014, 5:15 pm

Question: I didn't have an emg as the Nero I saw didn't feel the need to do one, the fact that I presented with twitching and cramps didn't bother him too much although he did ask lots of questions. My question is, if twitching and cramps are included as signs of als, do als symptoms show in a clinical exam as I don't understand how he said it's bfs without emg?
Amylou29
Selfless giver of time
Selfless giver of time
 
Posts: 160
Joined: August 14th, 2013, 3:12 pm

Re: Constant twitching

Postby RGB on January 23rd, 2014, 10:28 pm

Amylou29 wrote:Question: I didn't have an emg as the Nero I saw didn't feel the need to do one, the fact that I presented with twitching and cramps didn't bother him ... as I don't understand how he said it's bfs without emg?


Because he has many years of training, many years of clinical experience and is EVEN smarter than I am :D

..or..

Because it is so obviously not anything sinister you don't need an EMG.

...or...

And nobody has probably mentioned this before (!), twitching with a normal neuro exam (strength and reflexes) is not ALS.

I'm only attempting to be funny as you have nothing to be serious about. You don't have a horrible, terminal disease; rejoice!

RGB
My history....Jan '13: Widespread Twitches. May 13': Unremarkable Neuro Exam. Jul '13: Clean EMG. Oct '13: BFS Diagnosis Today's Date: Twitching and Healthy!
RGB
Selfless giver of time
Selfless giver of time
 
Posts: 238
Joined: February 6th, 2013, 1:07 pm

Re: Constant twitching

Sponsor

Sponsor
 

PreviousNext

Return to Experiences with BFS

Who is online

Users browsing this forum: No registered users and 4 guests