Why not ask at ALS site?

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Why not ask at ALS site?

Postby valentina on June 18th, 2004, 7:04 am

I come here last year when Doctor say I have BFS. I learn much and this place help my English.

I very curious why people come here worrying about ALS and ask question do I have ALS?

I wonder why these same people not go to ALS place and ask if they have ALS? Why come to BFS and ask do I have ALS?

Have you asked this at ALS site? I think this should be only for BFS. Otherwise everything too confusing and then get off purpose of this site which is for BFS.

I not mean to make trouble with this. I ask only because I am curious and because I find this strange that people ask do I have ALS on BFS site.

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Postby Pole on June 18th, 2004, 7:24 am

Valentina!

It's not so easy, becaue:

1. people here are afraid that may have ALS despite they were told by neurologists that they haven't. It's not easy to separate BFS from ALS.

2. not everyone is brave enough to visit ALS sites and post there

Where are you from?

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Postby valentina on June 18th, 2004, 7:42 am

Hallo Marcin!

Thanks you for reply. I read comment but am confused. It seem to me that Doctors find it very simple to see neurological problems once patient come to them. I read here that Doctors say they can tell if problems evident once patient enters examination room. How then is this difficult to separate BFS from ALS?

I am sorry for people who cannot accept Doctors answers, but as person with BFS who come here to learn and share experiences of BFS, I not approve of such ALS questions. This place for BFS people. If people not brave enough to visit and post on ALS site because they afraid, have they thought how their post effect people here. Why is it good to spread fear? I think this very selfish. This is only my opinion.

Thanks you again for reply. Am from small town north west of Moscow called Khimki. I now in Canada for judo tournament.

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Postby Pole on June 18th, 2004, 7:59 am

You are a very happy girl Valentina if you can trust doctors and have no doubt about their diagnosis but not everyone is able to do that. ALS fear makes people irrational.

This site is for people affected by BFS but the truth is that most of them are afraid of ALS. In my opinion, ALS fear is a part of BFS :idea: So we come here for reassurance and we must talk about ALS (to compare ALS and BFS sympthomps), because it's the only way to convince ourselves that we don't have it.

Moscow, a long way from Warsaw...I have never been there. Have you been in Poland?

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To valentina

Postby SLL on June 18th, 2004, 11:02 am

Every single person here has been or still is afraid of ALS because twitching is one fo the many symptoms of that horrible disease. Anyone who says otherwise here is lying. They may feel MUCH better about it now, but at some point that was their fear. For many of us, still is.

Since there is NO 100% definitive single test to rule out ALS (the EMG is a subjectively interpreted test) many have some doubt even despite what their physicians say.

AND lastly - the ALS sites are scary places. A BAD place for BFS sufferers to go...each time someone here wanders, like I recently have, their anxiety level goes up 1000 notches...and frankly I think it is rude to weep over there about what is my likely benign condition to people whose lives are being stolen away from them.
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Postby valentina on June 18th, 2004, 11:38 am

No, you are not correct. This ALS is not something that I ever concern me. As well, many people here have also concern over MS or PD. Not everyone as you say fear ALS. To make comment that says 'Anyone who says otherwise here is lying' is wrong. You are not correct.

If, as you say, twitching is one of the many symptoms of disease, how can rational person assume after talking to Doctor that they have this disease? There are many causes for twitching. Yet, you choose to believe you have worst disease? This thinking process not normal.

If you think you have ALS, so SHOULD go to ALS site. You SHOULD see their progression. This may make you believe you no have ALS. You think it rude to weep on ALS site? But it OK for you to come here after your anxiety level high and complain here? Do you not think that is rude also? This is for BFS.

When I first come here, I see on homepage that this place "is an Online Community for people suffering from BFS - Benign Fasciculation Syndrome, and those who wish to know more about the illness."

If there are so many here like you, I believe we should change the mission statement of this place. Maybe it should read "place for people who have been told they have BFS but believe they have ALS but do not wish to be rude to real ALS people so everyone talk here about ALS although the sign say for BFS"

To keep mission statement same is not accurate and does bad service for people like me who want information on BFS only.

This only my opinion.

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Postby speg on June 18th, 2004, 11:45 am

Good post, Val. I agree.

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To Valentina

Postby SLL on June 18th, 2004, 5:05 pm

I so wish I had your positive outlook!!! It is refreshing but I think I speak for at least some folks here - if muscle twitching was NOT a symptom of any life threatening illness - in other words that muscle twitching was NEVER a feature of anything scary at all and was always just "benign no matter what" , I would not be here at all trying to learn more about and trying to make myself feel better. I would not care at all.

My twitching annoys me for one reason - every time it happens I think about a disease that kills without apology.
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Postby Jenn311 on June 18th, 2004, 5:27 pm

"If there are so many here like you, I believe we should change the mission statement of this place. Maybe it should read "place for people who have been told they have BFS but believe they have ALS but do not wish to be rude to real ALS people so everyone talk here about ALS although the sign say for BFS" "

Too funny Valentina...Good one!

J 8)
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Postby speg on June 18th, 2004, 5:45 pm

Has anyone looked up the symptom of *muscle twitching* in the general encyclopedia of medical terms? If you are too afraid, I will gladly post it. ALS is one of about 10 or 12 possible causes of twitching. The majority are benign or non-life threatening. Some are serious, but not like ALS.

Any qualified doctor will tell you muscle twitching is common and normal, just some of us, for whatever reason, we twitch more than others.

If you continually dwell on your muscle twitching as a sign of ALS, especially after you have passed a neuro exam, EMG, and many months have gone by on top of all that, indicates (to me) that you have an anxiety disorder, not some rare form of slow-progressing ALS. MAYBE you are seeing the wrong kind of doctor?

Benign twitching is a hypochondriac's worst nightmare, folks. Some people here recognize this and are seeking treatment. Some folks, like Val, are fortunate enough to not have this added chemical imbalance in the brain and she can deal with her syndrome for what it is -- benign.

I even read something today that said BFS can cause a chemical imbalance that causes one to "fixate" on ALS. I personally believe some of us suffer from anxiety and OCD, which has caused us to twitch. . . . so the horse can come before the cart or vice versa.

If you are living in fear over this -- a visit to an anxiety support site might do you some good. You will be shocked at the number of people who twitch!

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Postby Greata on June 19th, 2004, 9:49 am

I understand what Val and the others are saying, this is a site for those suffering from BFS. However, do not forget our primary function is to provide support. Many have researched this condition and have shared good information. Since the specialists {physicians} give us very little to go on, this is essential. Unfortunately, along with good data comes the chance of bad and scary stuff as well. Just remember, it is all hypothetical.

What we do well, is help others get through the day when they are down..pretty fundamental.

I look at this forum as a support group for all folks in need, "psycho" :lol: or not.
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Postby Floater on June 19th, 2004, 9:58 pm

i agree there is to many als fears heres...cant we come up with a new disease?? cant we find out what bfs really is?? what is in our bodies that make us feel this way?? can we not call it bfs anymore?? bfs sounds *beep* and its easy for others to make fun of,,,and difficult to explain to others,,, oh the humanity!! :lol:

H.O.P.N. (hyperexciatability of the peripheral nerves)
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Postby Jenn311 on June 20th, 2004, 7:10 am

Hey Floater (aaron),

is BFS still the name of your band? And how is your cat?

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Postby Floater on June 20th, 2004, 10:58 am

Yes my band is still Named Benign fasciculatuion syndrome....i have 2 cds full of filthy material...and my cats still sit on my lap when i poo...actually my cat is featured in a bathroom scene when you open the cd case..

its freaks people out when they see it...oh well
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Postby Pole on June 21st, 2004, 7:35 am

Valentina, try to understand that for most BFSers, ALS fear is a part of BFS (propably the most heavy part). How would you like to separate these two things?

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