Inivisible Twitches!?

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Re: Inivisible Twitches!?

Postby J4son on June 4th, 2014, 1:00 pm

Bibi wrote:
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 .
Bibi


I didn’t do an EMG for many reasons:

First: By Fear of getting dirty results. As long as I am only twitching with no weakness I didn’t see the point of doing an EMG. ALS has exactly the same outcome and prognosis either the diagnosis is made early or not. It makes me laugh when I read some papers saying that people with twitching should be closely monitored for a few months. LOL, monitored for what, do we have a treatment? So with only twitching I didn’t see a reason of scaring myself more with the risk of a bad EMG. Now of course, in the presence of weakness an EMG must be done to check for some potentially treatable conditions.

Second: Sorry to disagree with the majority, but I am not convinced that an EMG gives a better diagnosis than a clinical regarding ALS. Months ago while searching the archives on this forum I came across a few links where true and obvious weakness appeared months prior to a clean EMG.

Third: I don’t see the point of not trusting my doctor when he said than an EMG was not necessary. The guy is a neurologist has seen plenty of ALS cases in his career, and he knows what he is talking about.

Fourth: I think we all fail to see the big picture. We focus on exceptions and odd presentations of a rare disease, on the 6.7% of twitching without weakness etc. And we forget that all these studies are here to refine and polish the general knowledge and understanding about ALS rather than to change it completely. It’s not like we’ve spent a century thinking weakness precedes twitching and today we found the opposite. It’s just that with new studies we found some exceptions to the rule, but in the overwhelming majority of cases weakness still come first. Our neurologists have something none of us have and its experience. For years they have seen true cases of ALS not just descriptions in a medical book or on a Google website. So when they see a patient they can quickly say if he fits the patterns for a MND or not. Prof. Mamede de Carvalho in his email to Helen posted on this website mentioned that he was never wrong in his diagnosis between BFS and MND. Which means that an experimented neurologist doesn’t need to wait till judgment day to see if twitching will evolve into something sinister or not.

I remember 15 years ago I was scared to death from having multiple sclerosis. My symptoms were terrible: Dizziness, loss of balance, blurred vision etc. When I met the neuro, he told me while still sitting behind his desk and before even examining me: “Ok, I’m going to make some clinical tests on you and order an MRI, not because I think you have M.S, you definitely don’t have MS, but because what you have is called health anxiety, and you will trust more an MRI than just my words.”

Fifth: Twitching is much more common than we think. For example on this website (http://neurology.about.com/od/Neuromusc ... dromes.htm) it is stated that twitching is present in 80% of normal people undergoing an EMG. While it’s obvious that some people here twitch much more than others, I also think that a Lot of members on this board become extremely tuned and focused on their bodies after reading about ALS on Google. This focus makes them aware of any weird sensation and starts a spiral of symptoms, worries, Google, doctors etc.

7 months ago when I started twitching, I went to the Neuro (not the one I saw 15 years ago) and while explaining to him that I had a visible twitch on my right deltoid, and before I was able to finish my sentence he said with a big smile on his face: “...and then you went on Internet and saw Maladie de Charcot” (French for Lou Gherig disease)… :) Maybe we should stop thinking that our doctors are morons…
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Re: Inivisible Twitches!?

Postby nrwtwitcher on June 4th, 2014, 1:59 pm

J4son: Yes twitching is really very common. My son is twitching sometimes, not like me all the time, but you can see his twitches also. A few days ago I saw some twitches at the arm of my friend, he does not have bfs. I think twitching that comes and goes is still normal. My problem is that I am twitching and cramping all the time.
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Re: Inivisible Twitches!?

Postby Bibi on June 4th, 2014, 4:31 pm

I am so happy about You People here spending your time to respons to my posts . I have never thought that i one Day should get friends from other contries Who Would do this. I am Sorry for my Many posts in not so Well english.
Can i ask one more quistion : in couple A days now i have Twitches in my chin , and of course i remember that i read that this i A Bulbar sign :shock: Its scares me even more than those in legs and feet. Have annonce experienced Twitches in chin ?
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Re: Inivisible Twitches!?

Postby leaflea on June 4th, 2014, 10:12 pm

yes, especially when anxious. Facial twitches are of little concern.
Matthew 6:27 Who of you by worrying can add a single hour to his life?
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Re: Inivisible Twitches!?

Postby Yuliasir on June 5th, 2014, 12:57 am

Bibi,
we all here are twitchers here therer and everywhere.
bulbar signs are impaired (usually permanently, severely and getting worse and worse) speech and disrupted swallowing reflex (not feeling of lump in the throat, not pain the the throat, but exactly INABILITY to swallow like the throat is convulsively closed).
Chin tremor, hypersalivation or hyposalivation, mild swallowing issues and perceived speech troubles (like "I feel like I speak strange..but nobody asks me to say again"), trembling of the tongue when you are looking at it in the mirror ARE NOT bulbar signs and are typical for anxiety disorders.
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Re: Inivisible Twitches!?

Postby Bibi on June 5th, 2014, 5:29 am

Yuliasir wrote:Bibi,
we all here are twitchers here therer and everywhere.
bulbar signs are impaired (usually permanently, severely and getting worse and worse) speech and disrupted swallowing reflex (not feeling of lump in the throat, not pain the the throat, but exactly INABILITY to swallow like the throat is convulsively closed).
Chin tremor, hypersalivation or hyposalivation, mild swallowing issues and perceived speech troubles (like "I feel like I speak strange..but nobody asks me to say again"), trembling of the tongue when you are looking at it in the mirror ARE NOT bulbar signs and are typical for anxiety disorders.


Dear yuliasir

Thank You so much for All your responses to my posts , i am looping forward to that Day where i hopefully Can look back on this and quit the fear os this disease . Today my leg are so tired and feels week because i was walking 3 km yeasterday. That again scares me .
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Re: Inivisible Twitches!?

Postby Yuliasir on June 5th, 2014, 6:03 am

but it is ok to have sore leg after 3 km walk... at least it is not unusual.
please rememeber certain excersise intolerance is common for BFS anmd we become more tired sometimes.
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Re: Inivisible Twitches!?

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