My Story (Very long, but meant to help)

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Postby Nancy on November 16th, 2007, 11:47 am

No one is debating that different symptoms can arise from different causes Nancy, but the evidence from the studies points to:


Actually, the debate has been whether BFS is "caused" by anxiety or autoimmune. At least, my understanding from your posts is that it is ONLY autommune based and folks like Kevin are being misleading in tlaking about other potential causes. Maybe I misunderstood you this whole time. :oops: Personally I don't think it is "either/or" and this particular bit of reserach suggests the same.
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Postby Angie on November 16th, 2007, 11:55 am

Nancy,

You and me must have way too much time on our hands or something. We hardly sleep, we debate hour after hour, no one wants to give up having the last word. It's like we're bitter kindred spirits or something. :lol:

There's reaserach that shows that PNH can be caused (supposedly, not completely proven) by autoimmunity, toxicity, genetics...things like that. I haven't come across any studies on BFS/PNH that show anxiety as a likely cause. Kevin is the rare, rare exception to the number of people claiming that by overcoming anxiety they cured their symptoms.

I will try to control my urge to get in the last word again as this posting is gonna set a new record.

Take Care,
Angie
Cramp-fasciculation syndrome: a treatable hyperexcitable peripheral nerve disorder.
Neurology. 1991 Jul;41(7):1021-4 Tahmoush AJ, et al.
"muscle aching, cramps, stiffness, exercise intolerance, and peripheral nerve hyper excitability"
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Postby Jennhaz on November 16th, 2007, 1:11 pm

I do not see how Angie can bring all you people down by telling you the truth, how you feel and take the truth is on you. I know you all want to come to this forum and have us tell you, "ahhh, don't worry, it is nothing," well sorry, cannot do that. Angie is pointing out things that have been on this board for a long time now, BFS in a nustshell, PNH article, I mean it is nothing we already did not know, so why all of a sudden is Angie bringing you down? We all have known that this could be an autoimmune problem, or any other physical problem, so now that ANgie puts it out there it is a downer. SO what, you want her to just agree that it is anxiety to make you guys feel better???? You were discussing anxiety as a cause and she is discussing autoimmune as a cause, the only problem is that you guys dont want to hear that it is physical because you are scared and now it brings you down....I have heard so many people on this post saying Angie, you are being mean, Angie we dont need to hear that, WHY NOT??? It *could be* the truth, it could be one of the options, you want us all to sit here and lie and say no it is nothing???

I can see it now, this BFS forum is heading to be an anxiety forum and then everyone that will come here will think that BFS is from anxiety. Might be, but we dont know that, and I know I do not want people thinking I have BFS because I have anxiety, ya know why, because then it is swept underneath the rug forever, and I know my physical pain is not from that. I can go on and on about this anxiety as the cause but I am not going to because I honestly feel that people will be to scared to want to even know the truth. I said it before, I am not afraid of anxiety, everyone has it, and everyone has had some trauma in their lives.

All I can say is that I know that anxiety has not taken my left arm that I cannot move without it bouncing up and down when I reach out. You can visibly see the non-smooth muscle and have this in my wrist. My BFS mimics alot of autoimmune diseases, am I afraid if it is autoimmune, noooo because it is benign, but I am not going to watch you guys beat up Angie for telling you guys what you have already known, she is just discussing it as her opinion on a cause, how you take that is not on her. There is no reason for her to lie just to give you peace in your heart. That would be like, when I first came on this board and asked people if they had a certain symptom and they just told me yes to make me feel better but they really did not have the same symptom. Angie is not doing this to be mean, she is being straight up and honest...Jenn
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Postby whataprettyworld on November 16th, 2007, 1:32 pm

Wow....this thead has legs. Not looked for a while and ithas really taken off, sure is both an interesting and contentious subject.

I can see it has got heated but I think we all need to remember we are attacking and questioning opinions and ideas, not the actual people. It is quite interesting to note how everyone who has posted in here holds such strong opinions and often see's an attack on these as a attack on themselves....don't know if this is telling in some ways in respect to how we are all wrapped up in our problems but thought it was worth mentioning.

A really good, informative debate that is I think is beneficial to all of us regardless of what we believe has led us here.
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Postby WitchyTwitchy on November 16th, 2007, 1:44 pm

I'll reply since I'm probably the only one that specifically said Angie was bringing me down.... and I'm only replying for myself.

I have always been opened-minded when it comes to BFS. If you look over my post, you'll see that I have entertained the ideas of viral, anxiety, medicines, etc.. But, how I have delievered my info or shared my thoughts have never been in a gloomy way. At least, I don't think so. The reason being is I know if the egg came first- meaning anxiety- then I don't want to add fuel to the fire. I have never insisted on a set cause, a set solution because NO ONE knows- not even the doctors. I only try to share what medically trained professionals have told me- so that maybe it will help calm another or reassure someone that their doctor is NOT the only one that believes anxiety can/has triggered this or a virus is to blame, or a certain med we've all taken, etc.. As for the autoimmune- my doctors have disregarded it maybe due to lab work that shows no need for further testing in that department. Sometimes it not the cold, harsh reality, but the way the message is delivered. We are all unique cases- and most likely our triggers are unique in themselves. The reason why I stopped reading/posting is because Angie seemed MAD at the fact that doctors were unable to tell the what, when, how of this condition and the way she spoke about the condition brought me down. (There is NO ONE on Earth that wants to know the what, when and why than... ALL OF US) I did what I thought was best- I removed myself from the board- because I thought I was the only one. But I returned to find I'm not. My last post was really meant in a soft way toward her. Maybe she and others can think about how they deliever their theories can have a HUGE impact on a person doubting and therefore not following through with the help they need. I hope all this makes sense- I don't have time to proof read- I'm packing for a trip. Take care.
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Postby Jennhaz on November 16th, 2007, 1:56 pm

Please remember that people with anxiety can be sick too. If you look this up, you will see many articles on how quick Dr.'s are to jump to the conclusion that it is anxiety. Also remember, there are many diseases and syndromes that cause of anxiety...Jenn
Jesus bore my sickness and carried my pain. Therefore I give no place to sickness or pain. For God sent His Word and healed me. (Ps.107:20)

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Postby whataprettyworld on November 16th, 2007, 2:00 pm

Jennhaz wrote:Please remember that people with anxiety can be sick too. If you look this up, you will see many articles on how quick Dr.'s are to jump to the conclusion that it is anxiety. Also remember, there are many diseases and syndromes that cause of anxiety...Jenn


Hmm, not sure that is the most helpful of statements. Firstly, it is stating the obvious and secondly what would be the point (and sense) of someone on here saying that someone with BFS could also have a neuro nasty.
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Postby k9ck on November 16th, 2007, 2:03 pm

Geehz,

I hope everyone calms down, I am stressed just reading this. I hope no one is getting mad at anyone, this use to be a board where people could speak freely, as long as it wasn't news that would freak anyone out.

This is a support forum, so lets show support and let people voice their views.

Terri
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Postby WitchyTwitchy on November 16th, 2007, 2:04 pm

Oh, I'm well aware of that.

I'll share this... recently I was diagnosed with inappropriate sinus tachycardia. I was put on Toprol XL. At my last visit with my regular doctor she asked, "Has the Toprol cured the twitching?" I said, "No, why was it supposed to?" She said, "Well, I was really thinking this was all tied in together and we're just discovering it." It shocked me! My father-in-law, a physician, also said the same thing. Meaning an electrial problem in the body. I never entertained the idea, but it goes to show you there a NUMEROUS things out there that can cause such symptoms. If you look up inappropriate sinus tachycardia- muscle cramping and tingling are listed!

Please guys, lets just help each other along. No hard feelings, I missed all y'all!
Smiles,

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Postby WitchyTwitchy on November 16th, 2007, 2:12 pm

I forgot to say...

My main issue was the delivery of the message. I'm all for theories. Like I said, I've entertained so many- many being flat-out wacko. But to insist or to label this condition as an impending doom is just not right. It hurts all of us.
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Postby Jennhaz on November 16th, 2007, 2:29 pm

Whataprettyworld,

Well my statement was suppose to state the obvious and you commenting on the fact that that is what people with BFS really want to hear was my point on the post above. No, you would rather have me lie to you...
Jesus bore my sickness and carried my pain. Therefore I give no place to sickness or pain. For God sent His Word and healed me. (Ps.107:20)

"Life is what happens to you while you are making other plans!!"
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Postby j7m on November 16th, 2007, 3:03 pm

Alright people, time for a group hug. Remember we are all of the same feather here...at least in our symptoms.

Let's not forget that this board is reviewed by many worried people who are looking for information to cope with and treat their symptoms.

It would be unfair for us to eliminate any discussions that helped people treat this condition or even overcome it.

I'm sure everyone would agree that all info should be shared in an open and fair atmosphere, and then viewers can choose their avenue for treatment.

This is one of the few open discussion boards on the net for BFS, and we certainly don't want newbies coming here and being scared off.
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Postby whataprettyworld on November 16th, 2007, 6:21 pm

...as it seems to have calmed down thought I would chuck in a little link:

http://www.emedicine.com/emerg/topic112.htm

Nowt nasty but very interesting. One taster for you:

"Presenting symptoms can range far across the field of clinical neurology. Conversion reactions usually approximate lesions in the motor or sensory pathways of the voluntary nervous system."

Yep, that is what he said!
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Postby Jennhaz on November 16th, 2007, 7:19 pm

I also have found articles that say the opposite and dispute that article, but ya know what I am not going to post it because I believe there are people that will get upset, and about now I really think you are not worth it and this is going to be my last post about this, actually I think this is my last post. For a couple of reasons, one this board is turning into an anxiety forum, and that is not why I am here. Two because I find it a bit dishearting that the people on this board are letting it get to that point , and letting someone come on this board and be a total smarta** is a little much. Quoting your arrogance, " Yep, that is what he said."

Plug ears if you dont want to hear:

You just cant let things go can ya. I have a feeling you are a real big smarta** that probably alot of people cant stand to be around for more then 5 minutes, well of course it depends on the company you entertain. I do not care what anyone says about what I just wrote, if you do not see this guys arrogance and the way he trys to instigate then oh well but I do and if you want to keep someone like this around then have at it....Outta here...Jenn
Jesus bore my sickness and carried my pain. Therefore I give no place to sickness or pain. For God sent His Word and healed me. (Ps.107:20)

"Life is what happens to you while you are making other plans!!"
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Postby whataprettyworld on November 16th, 2007, 7:44 pm

Jennhaz wrote:I also have found articles that say the opposite and dispute that article, but ya know what I am not going to post it because I believe there are people that will get upset, and about now I really think you are not worth it and this is going to be my last post about this, actually I think this is my last post. For a couple of reasons, one this board is turning into an anxiety forum, and that is not why I am here. Two because I find it a bit dishearting that the people on this board are letting it get to that point , and letting someone come on this board and be a total smarta** is a little much. Quoting your arrogance, " Yep, that is what he said."

Plug ears if you dont want to hear:

You just cant let things go can ya. I have a feeling you are a real big smarta** that probably alot of people cant stand to be around for more then 5 minutes, well of course it depends on the company you entertain. I do not care what anyone says about what I just wrote, if you do not see this guys arrogance and the way he trys to instigate then oh well but I do and if you want to keep someone like this around then have at it....Outta here...Jenn


Sorry you feel that way....it would appear that we can't be friends :?

As I said a few posts back, we are discussing peoples opinions and views...not people's personalities so I'm surprised that you feel that you want to take umbridge with mine.

So, you can find evidence that disputes Conversion Disorder. Brilliant, why not just post it as I would be interested in reading it. I'm not in the habit of burying my head in the sand I like having my beliefs tested and challenged as I find it either makes them stronger or allows me to modify them....the beliefs I hold now are different than they where 10 years ago for that very reason.

This thread started as a thread about anxiety and one person's experience of it....it is in the general topics folder and I would assume it is therefore a valid and worthwhile contribution to this forum. As I mentioned way back, it was obvious that an anxiety v BFS camp was emerging....could it not be argued that this thread has been hijacked by the BFS camp to discredit the anxiety thesis rather than the interpretation you choose to put forward?

Hey, I'm sorry if you find my style arrogant....I've got plenty of friends for the record but I suppose they may be as arrogant as me so that could explain it. Reading many of the threads on this forum there seems to be a diverse mixture that encompass support, reassurance information and symptom queries....maybe these are the sort of threads you feel the forum is best suited to provide. I saw this thread as a good debate in which both sides could question and probe each other to see if our beliefs stood up to the test. I'm still undecided on the issue but I believe that anxiety does play a huge issue....what I find confusing is when people have found themselves frustrated and unable to express themselves they have resorted to cheap shops and personal digs. I'm pretty sure I have not done that and feel quite happy with the contributions I have posted in this thread.

edit: oh yeah, thanks for 'letting' me come on the board :roll:
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