Inivisible Twitches!?

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Inivisible Twitches!?

Postby samuelmansano on May 26th, 2014, 1:17 am

Hello to all,first i like to apologize for my bad english, i'm from Brazil, I am a man 22 years old, I suffer from generalized anxiety disorder and since my last crisis in November 2013 I have been experiencing fasciculations, I perceived that crises increase and decrease according to my Anxiety, two weeks ago put in my head that I was with ALS, what really worries me are called fibrillations, sometimes in the face I feel like a very small fasciculation and continues that can not be seen on the skin,I wonder if this is an fibrillations, I have no weakness or atrophy I think but it scares me, I feel like a small blood vessel throbbed incessantly then go to the mirror and see nothing.

thanks for the help already, and sorry for my english.
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Re: Inivisible Twitches!?

Postby Yuliasir on May 26th, 2014, 5:12 am

Samuel,
according to the experience collected on this board, no matter what kind of twitches do you feel, see. or not feel or do not see.

generalized anxiety and young age are best indicators for BFS.
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Re: Inivisible Twitches!?

Postby samuelmansano on May 26th, 2014, 3:31 pm

Yuliasir, Thanks!
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Re: Inivisible Twitches!?

Postby mjd83 on June 2nd, 2014, 12:34 am

I also have sworn that I have felt twitches in my arms that I couldn't see..... while I was feeling it.

In one months time, I think I have had every kind of twitch that you can have. I have had some I can see but can't feel, some I can feel but can't see, some that feel like buzzing (fingers and toes), some that thump to the point of being visible through two layers of clothing (usually shoulders), and some that look like little dimples or worms under the skin (calves). I've had fast "automatic machine gun" twitches, slow twitches, single twitches (or popping sensations) all over the body, and some I probably haven't even thought of. Every couple weeks I seem to discover a new type of twitch in a new location, some that I didn't even think I had muscles to twitch. I twitched on my chin today, and have had a running hotspot in my left ass cheek.

I've also had cramped calves, cramped feed, feelings of weakness on my left ankle, left leg, and left arm (left is my twitching side).

I am finally getting to the point that I may really not have ALS and might in fact be a BFS'er. Part of what has convinced me of this is having no weakness, and every type of twitch under the sun. Here is my advice from experience:

1. Try not to worry every time you get a new type of twitch (like feel but no see). If you do, BFS will drive you wild.

2. A doctor, I think Twitchydoc, has actually discussed Fibrillations on this site in another post. He said that you absolutely will NOT feel OR see fibrillations. Theses are twitches of single muscle fibers that are much to small to see or feel, and can only be picked up on an EMG. Single muscle fibers are way too small for you to perceive, so don't worry about fibrillations unless they show up on an EMG.

3. There seems to be no consensus (including amongst the experts) what ALS or BFS twitches look like. Some think ALS twitches start out focal and BFS start out diffuse; and yet I've seen atleast one professional say the opposite of each. Some say ALS twitches are hard to notice, others report noticeable twitching in ALS. The only thing that everybody seems to more or less agree on is that twitching without weakness, especially in the under 40 crowd, is NOT a sign of ALS, and if it is an initial presentation it's a RARE presentation of a RARE disease. My personal theory is that everybody has their own unique twitching whether they have BFS or ALS, and the only real difference maker is that those with ALS have other symptoms (and more importantly signs a doc looks for like abnormal reflexes).

If it makes you feel better, I've actually read a paper on ALS diagnosis that suggested that patients under the age of 40 that come in for twitching and have a clean neuro exam don't even require an EMG (the only thing I"ve personally had is neuro exam and bloodwork from GP). Even over 40 is probably still benign, but the the chances of ALS go up slightly and the chances of BFS go down slightly with age. It seems that many on this site report experts that give them EMGs for the sake of reassurance alone.


4. Stay the hell off of google. Seriously. I did not start making progress in beating this anxiety until I stopped googling. You will find a bunch of reassuring facts (like statistics) that you will ignore and the occasional odd ALS testimony that you will latch onto and will scare the hell out of you. Google is psychological poison for those of us who suffer from health anxiety.
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Re: Inivisible Twitches!?

Postby TwitchyDoc on June 3rd, 2014, 2:40 am

Yes, fibrillations are really impossible to feel, these are basically continous twitches of individual muscle fibers.

As for widespread vs focal begining - I would say it is 50:50 when it comes to opinions. Many textbooks state that in MND, the start is "abrupt and widespread" while other say it beings in a certain area. As mjd83 mentioned, there is no accepted opinion. Some time ago it was thought that benign fasciculations fire at higher rate and yet after some time, entirely opposite was suggested. We do not even know why fasciculations occur, we only know some circumstances that could contribute but in MND specifically, it is still not known.

As long as there is no weaknes, reflex changes or EMG abnormalities (this is why EMG is still suggested despite a clean clinical as electrophysiological changes precede all clinical events), there is no reason to worry.
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Re: Inivisible Twitches!?

Postby ShawnW on June 3rd, 2014, 9:42 am

TwitchyDoc wrote:Yes, fibrillations are really impossible to feel, these are basically continous twitches of individual muscle fibers.

As for widespread vs focal begining - I would say it is 50:50 when it comes to opinions. Many textbooks state that in MND, the start is "abrupt and widespread" while other say it beings in a certain area. As mjd83 mentioned, there is no accepted opinion. Some time ago it was thought that benign fasciculations fire at higher rate and yet after some time, entirely opposite was suggested. We do not even know why fasciculations occur, we only know some circumstances that could contribute but in MND specifically, it is still not known.

As long as there is no weaknes, reflex changes or EMG abnormalities (this is why EMG is still suggested despite a clean clinical as electrophysiological changes precede all clinical events), there is no reason to worry.
Good post, thanks for that.
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Re: Inivisible Twitches!?

Postby German2 on June 3rd, 2014, 11:12 am

TwitchyDoc wrote:Yes, fibrillations are really impossible to feel, these are basically continous twitches of individual muscle fibers.

As for widespread vs focal begining - I would say it is 50:50 when it comes to opinions. Many textbooks state that in MND, the start is "abrupt and widespread" while other say it beings in a certain area. As mjd83 mentioned, there is no accepted opinion. Some time ago it was thought that benign fasciculations fire at higher rate and yet after some time, entirely opposite was suggested. We do not even know why fasciculations occur, we only know some circumstances that could contribute but in MND specifically, it is still not known.

As long as there is no weaknes, reflex changes or EMG abnormalities (this is why EMG is still suggested despite a clean clinical as electrophysiological changes precede all clinical events), there is no reason to worry.


Dear Twitchy doc,
thank you also from my side...That would mean, in the beginning does an EMG make sense and after a while, a clinical is also enough? I read a lot about several EMGs were made. In my case they did a very intensive EMG (every muscle, also back and nerve roots) a few weeks after the beginning of my twitching. An then I had several regular clinicals and nerve conductions speed tests. All ok. I am twitching for 10 month now. No neuro was willing to give me a further EMG telling me that they have already examined me once very extensively (but in my case it seems to be s.th. different then just BFS. My final test with a tuning fork at the legs was not fine. And I have Hashimoto). But of course I am in the crowd of people who want to rule out MND...
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Re: Inivisible Twitches!?

Postby TwitchyDoc on June 3rd, 2014, 12:06 pm

German2 - well, some non-specialists (i.e. general neurologists) will not suggest EMG if you come with fasciculations that the neurologist cannot observe during the examination and there are no deficits. But frankly speaking - and this is also expert opinion from specialists I know - this is wrong. If there is fasciculation, EMG should always be performed - not because of ALS, indeed, but to investigate what the cause is. Actually by not performing EMG the neurologist might neglect a disease which is treatable - what if you had e.g. early multifocal motor neuropathy or anything else? It is like going to doctor with permanent headaches that will not go away but without other issues - would you be happy if you doctor decided not to do CT/MRI just because you have no other symptoms yet?

According to Eisen, a "non-progressive course is more reassuring than a single EMG". In other words, time is what matters. Eisen personally mentioned 8 months period in the sticky post on this forum, if I remember correctly. The further the EMG is from the onset, the more reliable would it be. According to your EMG description, that was pretty extensive and thorough, showing you can be reassured greatly this is not MND. I do agree there is no need for another EMG unless there is a change on the clinical examination.

In theory, by the time you have fasciculations, there should be some other signs. Of course it is not always the case but it still apply to majority of the cases.
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Re: Inivisible Twitches!?

Postby German2 on June 3rd, 2014, 12:19 pm

Thank you Twichty Doc for your comments. I will ask my neuro on next tuesday whether he can do me a further EMG. For me it seems to be necessary...Thanks a lot!
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Re: Inivisible Twitches!?

Postby German2 on June 3rd, 2014, 1:11 pm

...just to explain. This is not because of your good explanation but more due to the fact that for me it is a new sign, that nerve conduction in my leg is not propper.
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Re: Inivisible Twitches!?

Postby Bibi on June 3rd, 2014, 1:45 pm

TwitchyDoc wrote:German2 - well, some non-specialists (i.e. general neurologists) will not suggest EMG if you come with fasciculations that the neurologist cannot observe during the examination and there are no deficits. But frankly speaking - and this is also expert opinion from specialists I know - this is wrong. If there is fasciculation, EMG should always be performed - not because of ALS, indeed, but to investigate what the cause is. Actually by not performing EMG the neurologist might neglect a disease which is treatable - what if you had e.g. early multifocal motor neuropathy or anything else? It is like going to doctor with permanent headaches that will not go away but without other issues - would you be happy if you doctor decided not to do CT/MRI just because you have no other symptoms yet?

According to Eisen, a "non-progressive course is more reassuring than a single EMG". In other words, time is what matters. Eisen personally mentioned 8 months period in the sticky post on this forum, if I remember correctly. The further the EMG is from the onset, the more reliable would it be. According to your EMG description, that was pretty extensive and thorough, showing you can be reassured greatly this is not MND. I do agree there is no need for another EMG unless there is a change on the clinical examination.

In theory, by the time you have fasciculations, there should be some other signs. Of course it is not always the case but it still apply to majority of the cases.


This makes me Extremely scared , i am only 5 weeks into fascikulations , i went to A neurologist in The second week and he gave me A clinical examination which was fine , no signs of ALS . I asked if i should have an EMG , but he Said no ,,it was only Use to confirm ALS if there was signs and i had no sign as he Said. I am 55 year old and i have twitces in my left leg and feet 24/7 and also some in my face and hands . Bibi
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Re: Inivisible Twitches!?

Postby German2 on June 3rd, 2014, 2:17 pm

Dear Bibi,
just to give you a bit reassurance. I have visited quite a lot of neuros, among them an als specialist (2 month ago) and in the beginning (after a few days of twitching) also one with als experience. Both told me they would immediately recognize an als sufferer just by the way he/she walks in and how they talk - even without that clinical. Of course they gave me a clinical in the end. But this is just to show you that some neuros feel quite quickly in the picture of the situation.
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Re: Inivisible Twitches!?

Postby TwitchyDoc on June 4th, 2014, 2:13 am

Bibi, then find a competent neurologist. Localized fasciculation - as any other - must be explained if possible. How did he know there is no root compression, plexopathy, radiculopathy etc.? If a neurologist thinks only about ALS when he sees fasciculations, he is a quack.
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Re: Inivisible Twitches!?

Postby nrwtwitcher on June 4th, 2014, 3:30 am

Bibi, you know, I am in the same boat like you. I am also female and 44, also in a dangerous age. Sometimes it is better, to read not too much. There are some different opinions about fasciculations and EMGs. I can tell you this: I have visited also a lot of neuros. They all tell me, that if there are no clinical signs, there is no reason for making an EMG. They told me further, that the signs, you could see on a EMG are only important in context to the clinical examination. For example: a bad EMG but nor typical clinical signs are also NO Sign of the bad disease. So they told me. One of them was a neuromuscular expert in muscular ambulance of a big uni hospital. He does not want to make a EMG in my case and I have extreme strong twitches, he could saw them, but he told me that a EMg was not necessary. So far my experiences. But sometimes it is just better for your mind, to make an EMG. Maybe it can help you to calm down a bit or to bring out other reasons for your fasciculations, like twitchydoc told. I my case: I had 4 EMGs, but I am still scared. Decide what will be the best for your mind. Fact is: No weakness, no als!
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Re: Inivisible Twitches!?

Postby Bibi on June 4th, 2014, 10:55 am

nrwtwitcher wrote:Bibi, you know, I am in the same boat like you. I am also female and 44, also in a dangerous age. Sometimes it is better, to read not too much. There are some different opinions about fasciculations and EMGs. I can tell you this: I have visited also a lot of neuros. They all tell me, that if there are no clinical signs, there is no reason for making an EMG. They told me further, that the signs, you could see on a EMG are only important in context to the clinical examination. For example: a bad EMG but nor typical clinical signs are also NO Sign of the bad disease. So they told me. One of them was a neuromuscular expert in muscular ambulance of a big uni hospital. He does not want to make a EMG in my case and I have extreme strong twitches, he could saw them, but he told me that a EMg was not necessary. So far my experiences. But sometimes it is just better for your mind, to make an EMG. Maybe it can help you to calm down a bit or to bring out other reasons for your fasciculations, like twitchydoc told. I my case: I had 4 EMGs, but I am still scared. Decide what will be the best for your mind. Fact is: No weakness, no als!

Thank You ! I Think here in Europe where we live there is this opinion that is only used after there is some clinical signs.
How did You get your EMG ang why dont you trust Them ? I have Read your posts and Can see that You also twitces in feet and legs? Has it become better now and Can The doctores dont find out whats Wrong ? I dont know what Will make me Calm , i am afraid that an EMG Would not become clean and as You say your doctor told : A bad EMG an not typical clinical sign are also no sign of A bad disease , but if that Would happen to me i Would freak even more out , so mayby it is Best for me not to have an EMG .
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Re: Inivisible Twitches!?

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