Do l have ALS??? Scared to death! Please help!

Information about how to manage or reduce the severity of BFS symptoms

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Do l have ALS??? Scared to death! Please help!

Postby SwedenEmil on November 7th, 2012, 5:03 am

Hi
lm Emil, lm 19 years old and live in Sweden.

It all began two month ago in September with a small pain in my left chest right above the heart area. The pain became more intense and l feared l had a heart problem. About 15 days after the first symtom, l started to notice some small twiching in my calvs and other areas of my both legs. The twiching became more intense and frequent during my anxiety l developed due to the fear l was experiencing . The twiching started emerging all over my body, even parts of my body l never expected contained muscles! l had this intense twiching for about 12-14 days, and the last 10 days my twiching have decreasing and became "stabile", lm mean the do emerge but less frequent and intense. l went to the doctor here in Sweden and told them about my symptom and the BFS. None of the doctors here in Sweden l talked to during my visit had ever heard about the condition BFS before. They just looked at me like if l was some crazyhead. Today, l only get small twiches in different parts of my body. it can be twiching in my back, in my calves and around the whole leg below the knee, my thighs at different areas, my arms (the same there), hands,thumbs, toes, ass, and chest. To summarize, it twich at different areas at the same time of my body and at different areas of my limbs, not only just at a single muscle. :( :( :( :( :(

The last 2 month has been a hell for me.. l think lve developed an anxiety disorder due to the fear of ALS.

Does anyone out there have or had the same symtoms as l have, and is this the way the BFS operates or is this an indication of ALS? - Btw my grandpa died of ALS.

What do the US doctors say about this condition? is it an early symtom of ALS or is it what you call BFS?

AND THE ONE HOUNDRED MILLION QUESTION.... Does anyone know how ALS operates? what comes first in the ALS stage, and is my symptoms consistent with tis horrible disease!?

Please help... anyone! :(
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Re: Do l have ALS??? Scared to death! Please help!

Postby TwitchyDoc on November 7th, 2012, 6:57 am

Have you even talked to a neurologists? Neurologists usually at least know there are benign fasciculations, not all of them consider BFS a real diagnosis because its like saying "headache". It is a symptom, in our case, we do not know the cause.
Your onset was quick, sudden and most likely fueled by the fear of that heart problem. Many people here, including me, started twitching in period of increased stress, yet there is no proof. You sound like typical BFS, do not worry.
As for ALS, I am sorry for your grandpa, but if he was the only one, it was nearly for sure sporadic form. Unfortunately ALS affects everyone differently but most often it begins with distal leg or hand muscles and progress proximally.
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Re: Do l have ALS??? Scared to death! Please help!

Postby Yuliasir on November 7th, 2012, 7:31 am

Hi Emil,
BFS seems to be a diagnosis accepted in USA, while fellows from Nordic countries often complain for the fact their neuros do not know that diagnosis. But that means just the fact they do not read american diagnostic textbooks ;))

ASL seldom has hereditary nature (however it is possible, as far as I heard, but in that case it usually strikes people earlier that usually, so it seems like your grandpa died in quite an old age so it must be a regular one, not hereditary)

Best way is to have a neurological exam which might (and most most probably will) tell you that your muscles are OK. In 19 years you are far away too young for severe MND like ALS.

As for the pain in the chest, it also might be a sign of well known autonomous system dystonia (happens to anxious or severely stressed people), and it never becomes a real heart attack. Get your ECG done and you will see for sure. For now it all looks most likely as a stress disorder.

welcome on board,
hugs
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Re: Do l have ALS??? Scared to death! Please help!

Postby Floydian on November 7th, 2012, 9:03 am

Hi Emil, take a deep breath.....
as Yulia said you are way too young so your age and your widespread twitching steers you away from a MND like ALS.
In general the first symptom with ALS is clinical weakness which in most cases is noticed immediately by a doctor/neuro.
There is no specific test to diagnose BFS, but when almost everything else is ruled out it's BFS. The letter "B" in BFS stands for "Benign" which is "godartad" in Sweden. Like my neuro said, there is good and bad twitching. And BFS means good twitching. Don't worry too much, enjoy life and welcome to the club. Grtz, Floydian
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Re: Do l have ALS??? Scared to death! Please help!

Postby angusglover on November 7th, 2012, 12:45 pm

Can you do all the things you used to, such as lifting, walking, standing on your toes? If yes, then you do not have ALS.

My dad died of it and I know how it works. you do not have it. Forget ALS and enjoy life or you will never get out of this circle.

Stay Well..
"If you can read this, thank a teacher....and since it's in English, thank a soldier"
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Re: Do l have ALS??? Scared to death! Please help!

Postby raindog on November 7th, 2012, 2:20 pm

angusglover wrote:Can you do all the things you used to, such as lifting, walking, standing on your toes? If yes, then you do not have ALS.

My dad died of it and I know how it works. you do not have it. Forget ALS and enjoy life or you will never get out of this circle.

Stay Well..


I second Angus's post. Plus your age makes you virtually impossible to have MND
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Re: Do l have ALS??? Scared to death! Please help!

Postby SwedenEmil on November 7th, 2012, 2:28 pm

Hi everyone!
l would like to thank you all four for your support and your valuable post!!
Really, every single one of you have reduced my anxiety, l swear to god l really did feel horrible earlier today but now after l read all of your uploads l feel so mutch better!

TwitchyDoc:
No really,l havent talked to a Neuro, l did schedule an appointment today actually, so l guess they will run some tests on me within a couple of month. You talk about stress as a factor to this condition, what kind of stress did you experienced before your BFS appeared? :)


Yuliasir
:
Yea it strange that this "disease" is only accpeted and known in US when l seems to be a global "disease"? So this condition could have been triggerd by my anxeity of a possible heart problem? Gee the doctors here in sweden really scares you, they never ever says something, their answer is always "we really cant say what this condition is due to, lets do some tests and see if their is something thats not right. Yes my grandpa died at the age of 87 l guess. So you mean that the sporadic ALS affects you later in life and reverse with the inherited one?- lve searched at the internet for the condition autonomous system dystonia with no relevant results. Could you explain what kind of condition that is. Thanks alot Yulia :D

Floydian:
But how far into the disease does the clinical weakness occur? thats the thing with worries me, that the weakness l may have slowly discrete affects me and that the weakness will be noticeable within a couple of month. Haha you have done your Swedish homework :P

Angusglover:
Yes have been trying to stand on my toes and all stuff you mentioned, and l dont feel any weakness at all really. Ohh lm sorry for your loss, do you know if it was the sporadic one?:( so twitching across the whole body isnt even near the symtoms of ALS? Were his symtoms similar to the symtoms of BFS though? And were his early symtoms weakness? Really thanks alot, you to :)
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Re: Do l have ALS??? Scared to death! Please help!

Postby TwitchyDoc on November 7th, 2012, 2:36 pm

See, you have not even spoken to a neurologists - usually GPs have no idea what is fasciculation or how signifficant it is, let alone BFS. Wait for the neurologist, you will be fine. As for the stress, I was heavily stressed about another health condition when my twitching started.
In ALS, the weakness often comes as a dexterity problem at first (in hands) - the textbook example is a problem with buttoning shirt, turning the keys etc. In most cases, by the time you have fasciculations (usually confined to one limb), you have a weakness.
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Re: Do l have ALS??? Scared to death! Please help!

Postby Yuliasir on November 7th, 2012, 2:48 pm

heh, I forgot that autonomous distonia is a kind of BFS-like diagnosis - it exists in Russia and former SU countries but does not exist in other countries or has another names maybe. Practically it is a condition when people experience hot flushes/chills, severe palpitations, sweating, pain in the heart region (sometimes very similar to CHF), dizziness etc. Sometimes it is called 'cardioneurosis' but generally people with this syndrome have in fact anxiety disorder somatized as heart problems. IN my country (Ukraine) BFS also do not exist as official diagnosis, so I am diagnozed with benign myoclonia which means i am twitching in a benign way (same as BFS).
As for ALS, typical statistic onset is somwhere around 60 years, with the interval from 45-50 to 80 years old. There could be outliers of course but they are really unfrequent.
Doctors still do their job - they really need to check you. Even if you are seemingly suffering anxiety disorder - there is no prven test for that :) and they have to check wheter you do not have endocrinal troubles, etc. etc.
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Re: Do l have ALS??? Scared to death! Please help!

Postby Floydian on November 8th, 2012, 3:09 am

If you don't have 'clinical' weakness you don't have to worry. I mentioned the word 'clinical' because many people here, including me, experience(d) 'perceived' weakness. In ALS, weakness is a first symptom noticed by not being able to hold or lift things, just like Yulia said.
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Re: Do l have ALS??? Scared to death! Please help!

Postby SwedenEmil on November 8th, 2012, 4:58 pm

Hi again!

Twichydoc: So its basically a mental stressfactor witch sets the illnes into action? when l think about, lm a kind of a person witch is concerned with the most things around me, it can be tiny things to bigger things. So you mean that more mental stress such as anxiety and suff like that is the main cause for this disease? What kind of problem do you have today with your twitching? when do it appear? and how long have you been suffering with this condition?

Yulia: Yes l saw that, there were only sites with russian language. So l could really be suffering from an anxiety disorder such as the one you mentioned ( Autonomous) What kind of symtoms is characterized with your condition besides twtiching? And how do you think you got the illnes?

Floydian: Alright so the weakness is the first sign, and thereafter the twtiching, so if l dont experience clinical weakness at this stage(twiching all over my body) lm healthy..Just a question, your illnes.. how did your twitching start, when, why, and how long have you to been suffering from this?

Kind regards to you all
/ Emil :D
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Re: Do l have ALS??? Scared to death! Please help!

Postby Yuliasir on November 9th, 2012, 1:09 am

Well, in fact those conditions mostly could not be gotten in this or that way. I mean for most of us prerequisites are inherent and we might need just a kick to develop twitches. Those prerequisites are of very complex nature and involve specific features of brain architecture (resullting in overall higher excitability of CNS), specific endocrinal performance and personal environment (family conditions etc.).
I have hereditarily high anxiety and obsession profile (so was my gandmother on maternal side (IBS), my mother had psychogenic asthma, I am GAD sufferer since 6 years old, my daughter had psychogenic migraines), I also was born with mild Ellers-Danloss Syndrome (joint hypermobility) which is often assosiated with increased anxiety, labile nervous system and increased twitches. However despite on living in adrenaline pool for over 35 years, I was not twitching until last year (when I was 41), and my own BFS triggers were extreme overworking, stress due to bad results of my work, concernes related to my daughter's health, and a final touch was extremely bad flu I've got in the tour supposed to be a relaxing time... So I am a classic BFS picture ;)

as for cardioneurosis, I had a school teacher suffering from it in his 20-30s, he is VERY nervous guy but still alive and doing well. he must be over 60 now. So it never causes heart attacks and you might even read somwhere that people with heart autonomous neurosis might even benefit a bit of it because their hearts got some real training and are more healthy than in average population (the risk of dying from HA is lower). In order toget relief you might have detailed examination if you want, and if everything is clear, then anxiety is a number one reason, and this is already manageable thing.
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Re: Do l have ALS??? Scared to death! Please help!

Postby TwitchyDoc on November 9th, 2012, 6:52 am

SwedenEmil: No, I am not saying that stress is causing this condition but that it likely contribute to its development along with other factors. BFS is not an actual diagnosis, its pathophysiology its unknown. Even in ALS, it is not sure where (in terms of axonal body, junction..) and why the fasciculations are being generated. For BFS, the observation in a few studies was that many patients did suffer from stress or anxiety during or before the onset of their symptoms. From medical point of view, I cannot see how this could permanently make anterior horns cells irritable so they fire irregularly and sporadically..but in the neurology, we know a little. Another point I mentioned in another thread is that BFS is a kind of viral infection of anterior horn cells (suggested by Mayo study but there is no proof for that).
As I believe the stress theory, it would be rather a trigger for an underlying process as for many of us, it is progressing slowly. E.g. I have started with upper body mainly, later lower part and after 3,5 years, I got the first real tongue fasciculation. As Raindog mentioned his doctors thoughts, this could be a benign lower motor neuron disorder.
My fasciculations started 5,4 years ago and right now its good (except for the mornings when the stretching of muscles causes really bad twitches). I take Kepra which is another choice besides Lyrica, Neurontin or Tegretol. Seems to be working so far.
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Re: Do l have ALS??? Scared to death! Please help!

Postby TwitchyDoc on November 9th, 2012, 6:52 am

SwedenEmil: No, I am not saying that stress is causing this condition but that it likely contribute to its development along with other factors. BFS is not an actual diagnosis, its pathophysiology its unknown. Even in ALS, it is not sure where (in terms of axonal body, junction..) and why the fasciculations are being generated. For BFS, the observation in a few studies was that many patients did suffer from stress or anxiety during or before the onset of their symptoms. From medical point of view, I cannot see how this could permanently make anterior horns cells irritable so they fire irregularly and sporadically..but in the neurology, we know a little. Another point I mentioned in another thread is that BFS is a kind of viral infection of anterior horn cells (suggested by Mayo study but there is no proof for that).
As I believe the stress theory, it would be rather a trigger for an underlying process as for many of us, it is progressing slowly. E.g. I have started with upper body mainly, later lower part and after 3,5 years, I got the first real tongue fasciculation. As Raindog mentioned his doctors thoughts, this could be a benign lower motor neuron disorder.
My fasciculations started 5,4 years ago and right now its good (except for the mornings when the stretching of muscles causes really bad twitches). I take Kepra which is another choice besides Lyrica, Neurontin or Tegretol. Seems to be working so far.
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Re: Do l have ALS??? Scared to death! Please help!

Postby Floydian on November 9th, 2012, 8:01 am

Emil, for me it starten about 7 months ago with a severe burning nerve pain, a lot of sensory/parasthesia issues like tingling, sleeping limbs etc... After a few weeks twitching started in my legs and later in other body parts. But twitching is not my primary symptom although it can be annoying. For many people here I think something was triggered in our body and messed up our nerve system. But I believe that in time we will be fine again.
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Re: Do l have ALS??? Scared to death! Please help!

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