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AboutBFS.com • View topic - Basso

Basso

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Postby portraitgal on July 17th, 2006, 5:27 pm

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Postby Christina on July 17th, 2006, 5:39 pm

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Postby SuziQ on July 17th, 2006, 5:43 pm

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Postby portraitgal on July 17th, 2006, 6:32 pm

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Postby puggriffey on July 17th, 2006, 8:20 pm

Portraitgirl-

First, I can TOTALLY hear you. I would NEVER wish BFS on my son or daughter, and pray they never have to live with it, or learn about it. Dear old dad does his darndest to hide it from them, not because I am ashamed of it, but because that type of innocence is SO rare. As such, having a daughter afflicted with something, even BFS, is heartwrenching.

Hard as it is to understand, I do think I believe in both sides - Suzis and yours. In general, I am a FIRM believer that MANY "cases" of BFS are driven right out of the mind/body connection - a connection that is SO much powerful than today's society wants us to think. I won't let the needle skip around on a broken record, so suffice to say I've made it clear over time that I think it's brutal how many people suffer needlessly because our society, its stigmas and views, its BROKEN healthcare system that refuses to acknowledge the value and potential financial benefit of funding meaningful, intelligent mental health treatments, etc. just compartmentalize it as "fuzzy math" of sorts, and relegate it to a second hand citizen in the medical world. In here, there are compelling enough "statistics" you can tabulate easily on your own of literally hundreds who suffered and then "recovered" when their mental perspective changed. Did the symptoms go away? Not universally, though in many cases I've spoken to they have (and I appear close to counting myself in that category, at least for a material amount of time). What did happen is BFS became more about the B than about the F or the S, and the living started again. I liken it most to an Olympic hopeful that ruptures a knee and never runs or skis again. Life goes on full well, but you've got a ruptured knee, and your physical state is different. BFS's outcome can be and is JUST THAT benign.

In your case, I think we all would be a little remiss not to at least acknowledge some common external "stressor" for you and your family - environmental? chemical? genetic? autoimmune? who knows - that likely "spawned" the BFS and other stuff across all of you. It would seem yours is a "unique" case of sorts (not saying you are the only ones or even a minority, just not typical to see FAMILIES afflicted simultaneuosly on here, though it does/did happen). What ISN'T different about your case, from my perspective at least (take it as another opinion, nothing more), is that once you have your diagnosis and knowledge that the underlying condition(s) is benign, the same mental approach can and will take place if you let it. It seems one of the biggest steps to your daughter's RECOVERY would almost certainly to have her SEE and FEEL that her mom and dad are not stuck in its grips. Kids are SO perceptive - my son can ALWAYS tell when I am having an off physical day somehow, and I worry where it might lead him when he grows up. Will he have hypochondriasis or an extra sensitivity to things physical himself? NOT IF I CAN HELP IT - and it starts with the way I react to the subject, my condition and the rest when he is around, and NOTICING.

You likely do this JUST FINE, but sometimes it just helps to hear it - our kids are the line THIS THING WILL NOT CROSS. Labeling it and dispensing it as the benign annoyance it is, is SO much easier when THEY ARE THE CONTEXT, and their hope is at stake. While I can't, nor can you obviously, control if our daughters face some of life's "shyt" (copyright Basso) along the way (although I'll do my DAMNDEST to make sure preventable things are prevented), but we are ALL ABOUT whether the shyt just stinks a little for them, or begins to define their lives, even when they suffer a little. Kids are amazingly resilient in the right environment.

So it may be worthwhile, only you can say, to let go of the "quest" for a little while, and focus on the results. I would - we ALL would - LOVE to know EXACTLY what causes this beast, and who suffers what and why for how long...no one has to give up trying forever. But from what you've posted, and from who you appear to be and where your priorities seem to be, that long-shot quest for answers might be best suited taking a seat for a little while so you can focus on the living and your daughter's doing the same. To do so might answer your question on how to Basso-ize yourself a little more... :wink: (and for pete's sake, PLEASE don't go overboard with that - picturing you in red velvet boxers with a hockey stick and a Moosehead in your hand is maybe more than we can take....hmmm - maybe not??? :shock: )

Best wishes for continued health. Especially for your daughter.

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Postby puggriffey on July 17th, 2006, 9:02 pm

My apologies portraitgirl -

I was thinking one thing and writing another in that earlier post. I KNEW your daughter has something else, and more serious that BFS, but MY daughter was distracting daddy, and my mind and fingers went off in their own little direction.

I was tempted to delete, but some is still pertinent. Especially her prognosis in a comfortable environment. Mom and Dad CAN set the tone, regardless of the affliction. With a sister-in-law who works in a childrens' hospital, and the stories she tells and the things we see when we visit, it is the surroundings and the outlook that can sometimes be the "tie-breaker".

Disregard the rest as it pertains to your daughter and BFS obviously, and keep on your quest for more of THOSE ANSWERS, to the extent it doesn't rob you of precious family time. I still wonder why I even give up the time with them I do to be on here, and though I still think this is worthwhile in its own rights, I am growing careful not to let it cost me the most important time in my life - being Dad.

Sorry for the goof. I wish you ALL the best -

JG
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Postby portraitgal on July 17th, 2006, 9:14 pm

Thanks JG. I knew you meant well.

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Postby basso on July 17th, 2006, 11:02 pm

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Postby Arron on July 18th, 2006, 1:06 am

You know... there are many things that cause things like cancer. It isn't just ONE carcinogen, it can be genetics, breathing asbestos, coming in contact with chemicals (benzenes, PCB's, etc.), coming in contact with radioactive substances, smoking, and even stupid things like eating barbequed meats with the outer layer seared black. There are literally hundreds (if not thousands) of causes for cancers. There is no ONE common cause. Age, gender, race, height, build... it just doesn't matter. Even a percentage of men get breast cancer.

Trying to find a common cause for BFS is about as complex. There are thousands of us that have put our symptoms down on paper before any of our BFS symptoms ever occurred and for as many people that show some sort of commonality, there are just as many other's that do not have those commonalities.

"You are what you eat". Words like that will get you killed. Yuell Gibbons died of food poisoning. Linda McCartney never ate red meat and only ate super healthy foods and she had a horrible case of cancer. Lance Armstrong (one of the healthiest guy's on the planet) got cancer. My folks back on the farm lands eat red meat by the pounds. They drink raw milk with extra cream right out of the milk vats at their dairies. They ALL smoke and drink and they ALL have lived to 100 and beyond.

Why do some people get skin cancer when they have never gotten a sun burn in their life, yet other people are walking-talking melanoma heads at even a glace at the sun?

"Think posititive". Most people who die of cancer were HOPING tp bneat it. Hoping to get better and "thinking" you are going to get better are the same thing. They all died anyway. Jump off a cliff and think positive as you fall and see how hard you splat when you land.

I am not trying to be a pessimist or a downer here, but I am whole heartedly AGAINST the medical community diverting funds and efforts away from much more sinister things than BFS. Why try to cure the common cold when people die of cancer each and every day? Why do people that smoke get lung cancer yet people that have never touched cigarette in their life also get lung cancer?

My point is; if YOU feel what you are doing is helping you, then more power to ya, but SuzieQ and many other's have the same philosiphy as myself in that BFS is BENIGN and it would be an absolute crime for the medical community to start researching this stuff and diverting funds away from other nasty things people die of each and every day.

I am not against a survey. We have had hundreds of them in years gone-by. This isn't anything new. What you need to realize though is to this date, not all doctors have even heard of the three letters "BFS", let alone know anything about it. WE have the knowledge and the collective experiences with it first hand. I can guarantee you that there isn't a neuro or a clinic on the planet that has as much collective information, data and experiences with BFS as we have on this site, which is why we designed this site in the first place.. to inform people, and to help calm their nerves that not all twitches mean ALS. Yes.. I said it... ALS! If you can't say it, then you need some help.

There is more information about the differences between BFS and ALS on this site than there probably is in all of the medical journals combined! If you can't tell the difference by now, all you need to do is read a few threads and you'll know the differences. The twitches aren't even close to being the same between BFS and ALS, so I am not sure why it is even an issue once someone has been informed.

I don't mean to come across as the site bully or like I am mad or anything... I am not. You have to take a step back in MY shoes for a moment and think of the tens of thousands of threads I have read, surverys I have seen, people saying they have a cure this week and then coming back the next saying their twitches all came back again.

Yoga, vitamins, sleep, exercise, B-12, magnesium, Guinko Biloba, pot, booze, benzo's, SSRI's, Lyme disease, Herpes, autoimmune disorder, neurological disorder, MS, antibiotics, a "mysterious illness", and hundreds of other causes, cures and remedies, and nothing with any one factor among everyone. Again, it's like trying to find one commonality with people that get cancer. It may never happen. If it does, then great. Maybe they can find a cure from that point-on, but as far as BFS goes, it may be an inconvenience to have, but it isn't anything like having cancer or any of those nasty things, and I think all of the efforts and research need to go into that sort of stuff, not for something that is nothing more than an "inconvenience"....

I am twitching right now, in about 3 different places, but that doesn't bother me as bad as having 3 different friends (all 3 young guy's with kids and family) who have some pretty bad cancer they are battling.

I have watched first hand, my wife (been together since the age of 13), deal with Systemic Lupus Erthamatosis. From 6 or 8 major surgeries, to years of chemo, to plasma pheresis, to getting TTP as a side effect, to taking so many meds and steroids that she had to have her hip replaced at the age of 20, to kidney dialisys, to being told on numerous occasions that I'd better spend the night with her because she won't make it through the night, to literally months in intensive care over the years, to you name it... I've seen it, and to see people "worry" about BFS, (a benign condition)... it just hits me in the wrong spot these days.

I can understand a newbie, who is scared, has been misinformed about twitching being related to ALS, needing to find answers and so on, and that's what this site is all about. I'd just like to see new data rather than just going over what we alread know, over and over again.
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Postby portraitgal on July 18th, 2006, 2:49 am

Aaron,

Thanks for showing up and thanks for your post, and heck! thanks for your site! You're just the person I was wanting to talk to.

(...I'll talk to you later Basso, the big guy's here.)

Firstly, I agree with you, it appears many things cause cancer and different things trigger BFS or PNH. Some here don't realize that it can be called PNH. Here's Stevepaul's link from this very site.

http://www.pnhe.info/

I'm sure you've seen this Aaron, but please bare with me, it is for the benefit of my argument.
You see, it appears this BFS/PNH is essentially an autoimmune disorder. So when I speak of a common cause, I'm speaking of a common cause to autoimmune disorders in general. I posted this link to Suzi-Q just yesterday on this very thread. I'm not sure if you read it.

http://www.cureautoimmunity.org/Common%20Cause.htm

This hypothesis offers the best hope to find a cure for all autoimmune disease. This appears ridiculously ambitious and optimistic of me, I realize, to be speaking of such thing as a cure! But hey, I guess I'm a visionary. And btw, I'm not even concerned about my BFS, Aaron, and believe it or not, I was never afraid I had ALS at all.

You see, we have a cluster of BFS cases here, my husband, my 8 yr old son and myself all came down with BFS at the same time. Scientists (I'm not being presumptious here, I personally know an excellent scientist) would agree that whenever you have a 'cluster' you have an excellent opportunity to learn something. You have a better chance of finding 'the trigger'. I liken our case to Gulf War Syndrome, because we had been exposed to chemicals, not the same chemicals, but, like you say, different things cause cancer, why not BFS. Mongoose just posted the other day asking if there were other Gulf War vets that came to this site. If there was a database we could give him not just an answer, but a good clear answer. As in, what percentage of BFS sufferer's are veterans of the Gulf War. Chemicals could be one of many triggers of BFS. Here is another link to another theory I like to better illustrate that point.

http://www.immunesupport.com/library/sh ... /CFIDS_FM/

I'm very sorry to hear of your wife's troubles with Lupus. I see why you don't have patience with the BFSers. Frankly, Aaron, I don't either. I could give a rat's ass about my BFS. It is not my concern. My concern is for my 2 yr old daughter, Lilah. She is everything I ever wanted from my life. She is the sweetest little pixie.....but she has secondary Raynaud's which means she has an underlying connective tissue disease, most likely in her case CREST/Scleroderma. And it's not going to be just a minor annoyance for her. I don't want to send the link for that one, you can find it for yourself.

I want a database for this site, because it is my belief that whatever triggered the BFS in us, triggered this autoimmune connective tissue disease in her. How difficult would it be to talk to the researchers in the field set up an extensive questionnaire, as Mork suggested? I'm not asking for research money for BFS. I'm just asking that everyone who comes here fill out an extensive survey so that it can all be compiled in a database. That way we can learn. If we learn 'the triggers', we can prevent. If we can prevent BFS, we may also prevent fibromyalgia, MS, Lupus, MG, CF, Scleroderma and the rest of them.

I hope I wasn't too long-winded. I think I've said my piece.

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Postby SuziQ on July 18th, 2006, 6:03 am

Hi Christy,
I just wanted to add that I hope everything works out with your daughter, and your whole family. I was remiss in not mentioning that before.

I get your frustration and why you would believe something triggered this auto-immune stuff in your entire family.

I guess if I were to amend my earlier comments, I would say that if finding a "cure" or "cause" for bfs would open the door to cure scleroderma, then of course I'm all for it. I wouldn't want to give you the impression that I feel otherwise. I only meant to say that I'd rather someone research the cure for scleroderma FIRST and worry about us bfs'ers last.

How old is your daughter? Any age would seem too young to me to diagnose a child with such a thing, but I know there can be a Juvenile onset. I apologize if you have posted all of this, but where are you taking her for evaluation?

I have Raynaud's as well. I've had it since I was in my late teens. It is a prerequisite for nurses as I'm sure you know. :wink:

But, you know what they say...cold hands...

Blessings,
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Postby portraitgal on July 18th, 2006, 11:59 am

Okay Basso, I suppose I've kept you waiting in suspense for long enough. First off, you are a 'darling' here, wouldn't you say? Check out post #3. Hey, you're a regular rock star!

You had quoted me when I pointed out some great discoveries that were made in science. I don't quite understand your response to that, because it was precisely my point that those were great discoveries made by scientists who happened to also be visionaries...Salk, Einstein-- what fool would argue they weren't? Certainly not this fool.

Next point...sensing some of you might perceive me as too much of a sourpuss. Other than my very presence reminding people that shyt does indeed happen sometimes (my girl) which clashes with the popular notion here that everybody is always well---I'm making the autoimmune connection to actual science rather than some kind of inner turmoil.
I wouldn't suppose you to be a pathologically happy person Basso. I'd be surprised at that, but I do think you can be pathologically silly person which is an entirely different thing when you are talking about things that involve health and science. Not that I'm against silliness! only to the extent that you are capable of preventing perfectly reasonable scientific discussion. True, we are not all doctors, but we are still allowed to discuss medical science, no?
Next, you bring up my whole reason for this thread in the quote I made about building a database, then you ignore it by telling me you are openminded and some other things that seemed way off point to me like...

Allow me to give an example of what I mean. If you knew a person who was rather intelligent, but they had been told a lie, long ago, that they were stupid, what might a fitting response to such a person be. I guess you could trot some statistical evidence about intelligence, or measure their I.Q. Do you think they would be able then to let go of such a lie; something that had been ingrained in the very fibre of their being? Or, perhaps do you think that maybe another approach might be warranted, one that included cajoling, coaxing, a little ass kicking and a helping of love.

I'm sorry Basso, but I don't see how this blather relates to an idea for a database.

In regard to my quote:

A little advice to you...First DREAM Basso, by all means DREAM. But then DO a little for Pete's sake. What is the point of dreaming if you don't?...

I don't mean to imply you don't do anything here. You certainly entertain and console people, but I don't see these things as necessarily the result of being a dreamer...

I hope I haven't offended you, because I do truthfully like you Basso. As a matter of fact, you happen to remind me a bit of my favorite cousin. He's an alternative thinker as well, though not nearly so entertaining as you.

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Postby Christina on July 18th, 2006, 3:37 pm

Kristi,

I'm reading this and not understanding at all. Maybe I am stupid (I've been called worse).

You began this thread, and named it" Basso"? You seemed to call him out, asking if he was a dreamer or an optomist...I then thought this was what the thread was about...it has however progressed to you saying it is about starting a database to compile information?

If that is now the purpose of this thread I do not think too many people will come to it to answer any questions,lol. Only true fans of Basso's will be intrigued by it's title and show (and there are many, myself included).

Why don't you start a survey thread and ask the questions that you would like answered? I am sure most of us will be happy to respond. I know that I would be happy to do anything that I could to help you help your daughter.

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Postby portraitgal on July 18th, 2006, 3:46 pm

Christina,

You're right. I noticed that too after it was too late to change it. This thread actually began on July 9. I resumed it after the BSF war on July 17. It was on July 17th that I had the idea for the database and wanted to engage Basso in a debate.

-Christy
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Postby portraitgal on July 18th, 2006, 3:52 pm

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