My fiance's take on BFS

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My fiance's take on BFS

Postby KERRI on July 9th, 2003, 7:52 am

I have been driving my husband to be bonkers with the whole twitching thing, I was telling him about that woman I read about and Dave and Guido's posts about twitching for 3-5 years and possible MND. He basically said this, if you are going to twitch for thirty years and then get als you will be just about 60 years old, that is pretty old, and that is a long way off, are we going to worry about this for thirty years, why bother living, and 3-5 years, that is a long time as well, to sit and worry whether or not you will die, why not live out 3-5 long and enjoyable years instead of worrying about dying every day. He twitches as well as me, yesterday he had them in the stomach, and arm, they rippled I never have ones like that, I just have small ones here and there every once and a while, yesterday I had one in my thumb for less than a minute and then it left and did not return. I have to really be looking for them at this point to even notice them. My fiancee twtiches so much more than me and he has never been to a doctor and does not plan on going to one, he says if als is going to happen he will worry about it when it does but for now he is going to live, and he promised that he will always love me if something like this occurs, and I promised him the same.

It is like the doctor I saw in NYC said, he has had them everyday since the age of 17 and he said he is well past 50 now, he never new what they were until med school but by then he had been having them for a long time, so he was not alarmed when he learned of there significance in als.

He said you are scared of alot of things are you not, scary movies, walking in a dark alley at night, dying of a heart attack or breast cancer, hell you could be struck by lightening. This does not mean that every day of your life you sit and worry about these things.

He is right, and he told me flat out, this is BFS, and you will probably outlive your fiancee, you must move on with your life because this is benign.

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Postby Just_curious on July 9th, 2003, 8:04 am

Kerri,

I agree with that, if you worry about something nothing may every come of it and you just worried yourself silly. I have always believed one must live their life like there is no tomorrow, make the best of it each day, make it special, always let a loved one know they mean something to you and you are grateful for them in your life, know that life brings obstacles and overcoming them makes you stronger. I understand if it becomes serious there is cause for concern but remember you have many canes in life to keep you going and to overcome them such as family and friends that love you dearly. I wish the best for everyone here and I understand that worrying and stress can make it worse all the more reason when feeling like that to turn to the one who helps you to make it throught that time and take your mind off the stress and worrying. Best wishes to you all.

Just curious... :)
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Postby Arron on July 9th, 2003, 5:55 pm

Here-here! :)
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Postby Brian_B on July 9th, 2003, 11:39 pm

I have a neurologist friend who also has BFS. Hes had it for 2 years and knows a co worker whos had it for 18 years.

I told him I been twitching for between year and a half-2 years and his advice was to what he did. Accept that you will twitch, maybe forever and move on with your life, dont let the twitches affect your life at all.

he said after 2 years of them that he now chooses to ignore them because he no longer fears what they could be.

Im slowly taking his advice and trying not let the twitches affect me since its been over a year and half of them with nothing worse besides occasionally more twitches at time and then times with not as many twitches.


this was his email to me


Brian:

I sometimes get delayed going to sleep. But most of
the time I don't let the twitches bother me. I figure
now approaching 2 years of them, I don't fear their
consequences. I have to methods. One is to read the
most biochemical and labouratory centred journal on
Molecular Genetics. That usually works. If I just
can't sleep, I get up and turn on the Lap top and surf
the internet in the middle of the night. Sometimes I
get sleepy from that and then go back to bed. But in
general, my sleep has been better than it has been in
years.

I think you focus on the twitches because you are
fearing that they are going to lead to something
worse. Once you accept the experience that your work
up and non-progression for 18 months pretty well make
you safe. Medications groups as Benzodiazepines
(Valium, Clonazepam, Lorazepam) will suppress
fasciculations and make you sleepy if needed. You
could talk to your doctor about one of them.

Donal
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great post

Postby KERRI on July 10th, 2003, 5:40 am

Brian_B wrote:I have a neurologist friend who also has BFS. Hes had it for 2 years and knows a co worker whos had it for 18 years.

I told him I been twitching for between year and a half-2 years and his advice was to what he did. Accept that you will twitch, maybe forever and move on with your life, dont let the twitches affect your life at all.

he said after 2 years of them that he now chooses to ignore them because he no longer fears what they could be.

Im slowly taking his advice and trying not let the twitches affect me since its been over a year and half of them with nothing worse besides occasionally more twitches at time and then times with not as many twitches.


This seems to be very common with doctors, I know of four already that suffer from fasciculations.


Kerri

this was his email to me


Brian:

I sometimes get dela*beep* going to sleep. But most of
the time I don't let the twitches bother me. I figure
now approaching 2 years of them, I don't fear their
consequences. I have to methods. One is to read the
most biochemical and labouratory centred journal on
Molecular Genetics. That usually works. If I just
can't sleep, I get up and turn on the Lap top and surf
the internet in the middle of the night. Sometimes I
get sleepy from that and then go back to bed. But in
general, my sleep has been better than it has been in
years.

I think you focus on the twitches because you are
fearing that they are going to lead to something
worse. Once you accept the experience that your work
up and non-progression for 18 months pretty well make
you safe. Medications groups as Benzodiazepines
(Valium, Clonazepam, Lorazepam) will suppress
fasciculations and make you sleepy if needed. You
could talk to your doctor about one of them.

Donal
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Postby Asterix on July 10th, 2003, 6:21 am

great post KERRI !

that's exactly the way we all should cope with this :)

I for myself have been trying hard to adopt this outlook/handle on life with BFS ... quite successful as of late: After 15 months of twitching I managed to reduce anxiety by 99% and I enjoyed & lived my life in the last couple of months more intensively than I ever did before :)
In a strange way the twitches even helped me to achieve this because
I take them as an constant reminder of how transient and precious my life and health really is and to be thankful and make the best of each day of it...

But I still have flash-backs of the fear/anxiety when
those "twitching-to-ALS" stories pop up on the boards.
Then I'm back in anxiety/obsession mode again ...
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