KERRI'S STORY

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KERRI'S STORY

Postby KERRI on May 9th, 2003, 5:26 am

I AM 29 AND HAVE HAD BFS FOR ONE YEAR. IT ALL BEGAN IN MY LEFT BICEP MUSCLE, I HAD LIFTED A VERY HEAVY BOX AT WORK AND ABOUT 20 MINUTES LATER MY LEFT BICEP STARTED TO TWITCH. I HAD, HAD TWITCHES BEFORE BUT NOT SO PRONOUNCED LIKE THIS ONE. THIS WENT ON PERIODICALLY FOR ABOUT 5 HOURS. I WAS A BIT CONCERNED SO I LOOKED UP TWITCH ON LINE, THAT BROUGHT ME TO FASCICULATIONS AND THEN THE BIG ONE ALS. I WAS SCARED TO DEATH AND BY THE NEXT MORNING I COULD FEEL TWITCHES EVERYWHERE. ALL THE TWITCHES I FEEL ARE LIKE POPPING POPCORN. SOME ARE SMALL AND SOME ARE BIG. I HATE THE ONES THAT THUMP, THEY ARE MAINLY IN MY THIGHS.

I HAVE SEEN THREE NEUROLOGISTS AND ABOUT 5 GENERAL PRACTITIONERS. TWO OF THE NEUROLOGISTS TOLD ME THIS IS A BENIGN CONDITION, ONE OF THEM IS FROM MT SINAI IN NYC, HE HAS 19 ALS PATIENTS AT THIS MOMENT, AND HAS SEEN WELL OVER THAT IN THE TIME HE HAS BEEN PRACTICING.

I HAVE HAD 4 EMGS ONE OF THE LEFT ARM AT 4 MONTHS, BOTHS LEGS AT 7 MONTHS AND THE TONGUE AT 10 MONTHS.

ALL OF THEM WERE CONSIDERED NEGATIVE, BUT THE ONE OF MY LEFT THIGH SHOWED A OCCASIONAL LOCALIZED TWITCH.

MY NEURO EXAMS ARE CONSIDERED NORMAL, BUT I DO HAVE BRISK REFLEXES, SOME TIMES THEY ARE BRISK AND SOMETIMES THEY ARE NOT AS BRISK. SOME DRS SAY A LITTLE BRISK SOME SAY BRISK, ALL OF THEM SAY THEY ARE NOT PATHOLOGICAL.

I AM STILL A WRECK BECAUSE I AM A HYPOCHONDRIAC AND I HAVE A SYMPTOM OF A MAJOR DISEASE SO I FREAK OUT NOW AND THEN.

I WORK WITH A NEUROLOGIST AND WE DO EMGS, I HAVE ONLY SEEN FASCICULATIONS ON ONE OUT OF 50 PEOPLE WE HAVE DONE SO FAR. I JUST STARTED WORKING WITH HIM IN OCTOBER.

HE REASSURES ME ALL THE TIME THAT EVERYTHING IS OKAY BUT I AM STILL A BIT SCARED.

I AM CONTEMPLATING HAVING A MUSCLE BIOPSY OF THE LEFT ARM, SO THAT I CAN TRY TO MOVE ON.

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Postby Floater on May 23rd, 2003, 8:35 pm

you must really so bad.. want a neurological disease :roll:
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Postby KERRI on May 24th, 2003, 2:27 am

Why do you say things like this, not only that how could, everyone is different at copeing with certain things, I am very strong at my job, my finances usually, and protecting or helping family and friends, but I am a failure at health, since childhood health has always been an issue. I have health anxiety I know this, so sometimes it takes alot more to convince me than the rest of the general population.

I think it stems from my untrust for doctors, my little sister was born breach wtih a dislocated hip, by the time the doctors figured it out she had no ball or socket left because the hip grinded itself away from the dislocation the constant movement from walking completely wore the ball and socket away. My mom was the one who kept noticing little things that she had not noticed with us, that is myself and older sister, she repeatedly asked the doctor and he acted as if she,were a HEAD CASE and his excuse was oh...... all the kid needs is a lift, she probably has one leg shorter than the other, and of course over the years the leg continued to get shorter, that pediatrician and others in the practice saw no reason to address my moms worries, they did no xrays of my sister, nothing. They just acted like my mom was crazy.

My mom decided that she needed to take Melissa to a specialist, without the help of the pediatrician. My mom was so affraid, my sister had started kindergarten and could not keep up with the other children. the teacher started questioning as well. when my mom went to the specialist with melissa and my dad, the specialist was soooooooooooooooooo angry, Melissa hip and socket were non-existant. there was only the femur left with the top being a jagged edge. I am in the radiology field and have shown the xrays to some of my docs, they say how could a baby of six years old every handle the pain that must have gone with that. Melissa has a limp and had to have a pembertain osteostomy at six years old, six. My parents cried from the day she came home from the specialist and all through that summer, there child had to be in a body cast from the waste down the full right leg and half the left. I could not play with my little sister that whole summer, only video games, she was so sad, she was only six,she had to have a bed pan, she could not even get up to go to the bathroom.

THE point I HATED DR.S AND IN MY HEAD SWORE NEVER TO TRUST THEM, THEY PAID WELL FOR WHAT THEY DID IN THIS CASE, AND SO DID THE HOSPITAL WHERE WHE WAS BORN, BUT THIS IS THE REASON WHY I DO NOT TRUST A FRIGGEN THING THEY SAY.

My sister will be disabled for the rest of her life, if she has babies she will have to be on permanent bed rest.
:evil: :evil: :evil:

I understand that you may think I am a head case, but everyone has there reasons.

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Postby Jenn311 on May 24th, 2003, 9:16 am

Kerri,

That is a really sad story about your sister! It's no wonder you don't trust doctors.

Floater,

I think you'll learn that as you go through life people will like you a lot more if you keep your negative, non-constructive comments to yourself. People with real problems come to this forum for support, not to be belittled. We all know the mind games that BFS can play with us. Some people have a harder time dealing with it than others. Please be kind to them.
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Postby Floater on May 25th, 2003, 12:36 pm

kerri

i am not trying to belittle you...all im saying is ...you do not have ALS...it just seems that you wont be satisfied unless your diagnosed with it. and i know you really dont want it,,,but your making yourself physically ill from worry and as soon as you exhaust a life time of anxiety,,, you will find yourself very deppressed.. even over the years leading to mental illness....relax your only 29...emg was fine...i assume you had bloodwork done,,if that was all fine...i wouldnt worry.. there might be some small chance that you have a condition called Benign Fasciculation Syndrome.

my suggestion to you, is take a stroll down to Water St. look out over the hudson river and thank god your still alive and living in Athens :D
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Kerri, a question for you

Postby dave YY on May 25th, 2003, 5:50 pm

in the thread about yourself, you said you work with a neurologist and do EMGs. Then later in the same thread you say you do radiology. They seem rather different fields to me...

You're surrounded by doctors, yet hate them all.

Can you please explain the contradictions? I think it's a fair question.

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CLARIFYING MY RESUME

Postby KERRI on May 25th, 2003, 9:53 pm

I am a radiology supervisor, I operate a radiology department under a director. I am in charge of cat scan, ultrasound, xray, mammography, bone density, nuclear medicine, electromyography, vascular, soon to have pain management and mri.

The director and myself were asked to take on electromyography in around July of last year, and no I had know idea about ALS because of the Emg. I probably began twitching because of the overwork. The neurologist and I did not have a great working relationship in the begining, I tried to put a tech aid with him to help clean up the room and do patients it did not work, he is a perfectionist and everything needs to run smoothly. So, above everything else I have to do, he was going to pull out and leave us. I pretty much begged him to stay and told him I would get the best person I could find to assit him. The only person I could think of was me. So, I supervise every day mon-sun I am on call for my department. The director and I split for just techical I am always on call for clerical and on Tuesdays I am the emg slave and supervisor, but it has worked out well the patients love us and have already written letters, we are booked out into september for emgs, and I have a great working relationship with the radiologist, which is unfortunate because I have been offered a much better job and definately less stressful, and it is a goverment job, better bennies.

So, now that I bored everyone, that is what I do for a living, that is about all I do with my life, I am sooooooooo busy.

Kerri
Last edited by KERRI on May 27th, 2003, 10:06 pm, edited 1 time in total.
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Re: Kerri, a question for you

Postby KERRI on May 25th, 2003, 10:15 pm

dave YY wrote:in the thread about yourself, you said you work with a neurologist and do EMGs. Then later in the same thread you say you do radiology. They seem rather different fields to me...

You're surrounded by doctors, yet hate them all.

Can you please explain the contradictions? I think it's a fair question.

dave


Dave,

Not that I don't enjoy bragging about my absolutely outstanding resume, heck would you like to know what I got my BA in, or the fact that I have worked in the same hospital for 8 years and started only as a secreatary in radiology. Oh, and in case you are wondering I obtained my BA while working three 12 hr days and going to school during the week.

READY.......here comes my point.......people come here for help and not to be picked apart, so try not to do this again to anyone, it is offensive, I try to keep my posts limited which is hard, so some times we get bits and pieces not the entire story. I gave you the response that you felt was only fair. Please keep in mind this place is here so we can help one another.

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Postby dave YY on May 26th, 2003, 7:38 am

Kerri,

While I am sympathetic about the anxiety you have over ALS, and I've had it for four years myself, my question is defensible. Your reply to it doesn't make much sense to me, but perhaps your hospital is structured very different from anything I've seen.

I've spent many hours extending what I know about BFS to others, though mostly on the Neuromuscular forum on the Braintalk board (which might be a good place for you as there is heavier traffic in people with fasciculations there). Since you scolded me about the purpose of this board being to help people, allow me to point out that this seems to be the message you want to impart to people here including newbies who come here for reassurance:

--don't trust your doctors
--don't trust the EMG
--BFS can turn into ALS, even ten years later

Now, having done my fair share of digging before I realized it was ruining my life, I know that for you to find the unusual, atypical stuff you seem to have dug up, you must have found GOBS of stuff that contradicts the more alarming posts you make. The overwhelming published evidence contradicts the suggestions you tend to post here. If I were a newbie you would have (needlessly, in my opinion) scared the crap out of me.

You're perfectly free to post what you like, on topic, and it's not my intention to criticize or try to mute you. But questioning in itself is not offensive, and neither was my language. If you like you can swing by the Braintalk board too, where you'll get a lot of support and info and even more people who twitch, but be warned, they ask questions when warranted too.

http://neuro-mancer.mgh.harvard.edu/cgi ... Rose+Marie)&number=65&DaysPrune=1000&LastLogin=
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Postby KERRI on May 26th, 2003, 8:38 am

dave YY wrote:Kerri,

While I am sympathetic about the anxiety you have over ALS, and I've had it for four years myself, my question is defensible. Your reply to it doesn't make much sense to me, but perhaps your hospital is structured very different from anything I've seen.

I've spent many hours extending what I know about BFS to others, though mostly on the Neuromuscular forum on the Braintalk board (which might be a good place for you as there is heavier traffic in people with fasciculations there). Since you scolded me about the purpose of this board being to help people, allow me to point out that this seems to be the message you want to impart to people here including newbies who come here for reassurance:


--don't trust your doctors
--don't trust the EMG
--BFS can turn into ALS, even ten years later

Now, having done my fair share of digging before I realized it was ruining my life, I know that for you to find the unusual, atypical stuff you seem to have dug up, you must have found GOBS of stuff that contradicts the more alarming posts you make. The overwhelming published evidence contradicts the suggestions you tend to post here. If I were a newbie you would have (needlessly, in my opinion) scared the crap out of me.

You're perfectly free to post what you like, on topic, and it's not my intention to criticize or try to mute you. But questioning in itself is not offensive, and neither was my language. If you like you can swing by the Braintalk board too, where you'll get a lot of support and info and even more people who twitch, but be warned, they ask questions when warranted too.

http://neuro-mancer.mgh.harvard.edu/cgi ... Rose+Marie)&number=65&DaysPrune=1000&LastLogin=



Dave,

I am not trying to scare people or say that they need not trust doctors, and I think people on here see that, you have been in the forum one day and managed to attack me more than once, I will not go over to the other forum, I trust what these guys in here say, they have lived it and slowly with there help I am getting on track. There are great doctors out there, I work with some good and some bad, you should shop around if you feel they are not listening or something just is not right. I have done my shopping had my emgs, but like everything in my life, it is hard to sell to me, deep down inside I know this is nothing, but I have to believe that and I am trying. What you are doing contradicting and using my own words against me, this can be more harmful than helpful as well, and I know there are people on this forum just like me, hypochondriacs, it takes us a while to believe we are going to be okay, and they way that you are acting it would scare me away.

I see someone post who is like me and they do not scare me, I feel for them, and usually they are smart enough like I was to contact Aaron, someone with more knowledge, and he gives them some insight and makes them feel better. Anyone who comes here should not be affraid to list their fears that is why this place is here. They can talk it out and get info from people who have been through it, people who want to walk them through it.

I would like to thank everyone who has helped me so far especially Jenn.

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Well

Postby dave YY on May 26th, 2003, 10:39 am

Minor clarification, I've visited the this board before, long before, but lost my password. I have posted in the past under Dave Y, which is also my username at Braintalk.

The point is, on the other board you will find many MORE people who say the same things as here. I'm not talking about switching, but looking there also when you have an urgent need for reassurance. I know when I used to "discover" something on the internet that made me think I had ALS, I would freak and the quick responses on that board were a godsend.

Kerri, relax, I'm not the boogie man out to get you. I've had five EMGs--just as unnecessary as your four-- and was in your shoes three years ago. I "shopped around" for neuros until I found one who told me my tongue was atrophied and suggested it was ALS, which taught me if you go looking for trouble eventually you'll find it (she mistook scalloping--the natural indentations left by teeth--as atrophy).

Are you so sure that having people hold your hand while you do this to yourself is the best thing for you? I call what I used to do "recreational paranoia." It was very bad for me. In retrospect, on the other board, the most effective voices of reason were the blunt ones.
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Well...

Postby DanielDK on May 26th, 2003, 7:51 pm

Hi everyone -

I just read your minor debate here, and I must say I' m somewhat confused.

Naturally, this place shouldn't turn into any kind of mud-throwing contest, but in this case I think dave yy has a point.

Dear Kerri. As much as I deeply, deeply understand your concerns about your health, future, job and whatever, I must say that I truly CAN understand why some people, including myself can be scared by your posts, and how people's closed wounds can be tored open again. Thw whole idea - correct me if I'm wrong please - about this forum, is for people suffering with BFS (or the like..?), to join in, and seek comfort, understanding, and peace alongside fellow BFS´ers. What I mean is, it seemed as if you came riding in to this forum on the ALS-horse, breaking in to every single forum and spreading the word of this horrible disease everywhere.

I understand that you are worried - so are all of us. But talking, mentioning and worrying about the disease is the worst possible therapy. Moving on, getting over and forgeting your worries is pretty much the ONLY thing you can do to battle this fear. We have had the doctors to tell us that we DO NOT SUFFER FROM ALS. They' ve told us. a zillion times. We KNOW we dont suffer from it - yet we still fear it. Why - because we´re constantly getting reminded of it - sometimes, by you. Almost everyone in here know how depressing it can be to surf the internet, look up the word "ALS" on Google, going tom all these Frankenstein-you'll-die-tomorrow- homepages, claiming you have ALS if these general symptoms aplly to you. We all try to escape these webpages - some of us even promise ourselves to STOP GOING THERE ON THE NET. And I' m sorry to say this - but have actually kind of turned this forum in to one of these web-pages, I wouldn't go to - Cuz I know they scare the *beep* out of me.

I guess I'm also trying to say - I dont quite understand your fears. You' ve somehow made ALS your best friend. If you had proof, of any case, where an ALS-patient went to a doctor that told her "you' re just fine", but then years later, she found out and died from it, then I would understand. But....really?

If you dont believe what the doctors say - you might as well stop livi´ng. Do you really think that the people in here know more about ALS, MS or BFS than the doctors? People that see cases everyday, studied for 10+ yrs? Sure, you can get comfort and hear the stories of others just like you and me - but if you contionusly, after 4 emg's + all the rest still believe you' re gonna die in a year or two - this is not the place for you to go. In that case, I' d recommend a psychiatrist or psychologist. You'd have to start working with yourself. Convince yourself that you' ll live forever (!)

But what's the good if you cure yourself of all your worries in here, if, at the same time, you start making say 10 people, who have for months or even years tried to calm down their fears and get on with their life, worried and depressed again? It doesnt quite seem as a fair equation. Anyways - just think about it. Or - tell me I' m a stupid dork!

Yours sincerely,

Daniel
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Re: Well...

Postby KERRI on May 27th, 2003, 8:52 am

DanielDK wrote:Hi everyone -

I just read your minor debate here, and I must say I' m somewhat confused.

Naturally, this place shouldn't turn into any kind of mud-throwing contest, but in this case I think dave yy has a point.

Dear Kerri. As much as I deeply, deeply understand your concerns about your health, future, job and whatever, I must say that I truly CAN understand why some people, including myself can be scared by your posts, and how people's closed wounds can be tored open again. Thw whole idea - correct me if I'm wrong please - about this forum, is for people suffering with BFS (or the like..?), to join in, and seek comfort, understanding, and peace alongside fellow BFS´ers. What I mean is, it seemed as if you came riding in to this forum on the ALS-horse, breaking in to every single forum and spreading the word of this horrible disease everywhere.

I understand that you are worried - so are all of us. But talking, mentioning and worrying about the disease is the worst possible therapy. Moving on, getting over and forgeting your worries is pretty much the ONLY thing you can do to battle this fear. We have had the doctors to tell us that we DO NOT SUFFER FROM ALS. They' ve told us. a zillion times. We KNOW we dont suffer from it - yet we still fear it. Why - because we´re constantly getting reminded of it - sometimes, by you. Almost everyone in here know how depressing it can be to surf the internet, look up the word "ALS" on Google, going tom all these Frankenstein-you'll-die-tomorrow- homepages, claiming you have ALS if these general symptoms aplly to you. We all try to escape these webpages - some of us even promise ourselves to STOP GOING THERE ON THE NET. And I' m sorry to say this - but have actually kind of turned this forum in to one of these web-pages, I wouldn't go to - Cuz I know they scare the *beep* out of me.

I guess I'm also trying to say - I dont quite understand your fears. You' ve somehow made ALS your best friend. If you had proof, of any case, where an ALS-patient went to a doctor that told her "you' re just fine", but then years later, she found out and died from it, then I would understand. But....really?

If you dont believe what the doctors say - you might as well stop livi´ng. Do you really think that the people in here know more about ALS, MS or BFS than the doctors? People that see cases everyday, studied for 10+ yrs? Sure, you can get comfort and hear the stories of others just like you and me - but if you contionusly, after 4 emg's + all the rest still believe you' re gonna die in a year or two - this is not the place for you to go. In that case, I' d recommend a psychiatrist or psychologist. You'd have to start working with yourself. Convince yourself that you' ll live forever (!)

But what's the good if you cure yourself of all your worries in here, if, at the same time, you start making say 10 people, who have for months or even years tried to calm down their fears and get on with their life, worried and depressed again? It doesnt quite seem as a fair equation. Anyways - just think about it. Or - tell me I' m a stupid dork!

Yours sincerely,

Daniel



Daniel,

First of all this has carried on tooo long,

anyone out there who has suffered with twitches for more than a year, I think it is obvious YOU ARE OKAY.

it was this forum that helped me and very patient friends and family.

I WOULD NEVER TELL ANYONE, HIDE YOUR FEARS SO THAT I MAY NOT SUFFER. There are people who have posted the " A " word besides me, so try not to further the mud slinging contest. I think Dave and I are on even ground now, so do not prolong this.

I also think I have done pretty darn good with the " A " fear, I have started to get passed it. I came to this place to find people like me and express my fears so they could give me their take on it. That helped, I would do it for anyone here.

P.S. if your therapy is running from your fear, and the mention of the word brings back your fears, you have not confronted your fear and solved anything, what you are essentially saying is you burried it, and that is not good therapy.


look at my posts now guys, I am doing well, and anyone in the forum who has a genuine fear, you should not be affraid to post it, do it, and people who really care will help ya through it.

The old timers in here, who are really beyond all that, know they are okay and most of what they do in here is just help others.

Kerri
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Re: Well...

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