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PostPosted: November 15th, 2007, 2:42 pm
by j7m
I'm sticking with the hypothalamus!

PostPosted: November 15th, 2007, 2:44 pm
by whataprettyworld
Jennhaz wrote:Whataprettyworld,
First off you are the one that just made this a newbie vs. BFS dx competition. Noone ever said that here.....
I just read your post again and I really do not like your comment how us BFS dx people seem to want to fight their corner as if the credibility of the condition is at stake. YOu are dang right it is at stake. I had to fight through tons of Dr.'s to get a true dx instead of the others telling me it was in my head. Many of us on here have been through hell in back to get that dx and not the dx that it was in our heads.

You say that our sensations might be explained by anxiety once understood??? I do understand what you are saying and have heard probably alot more from my counselors, and was made to read up on it, but nooo I still do not see the link compared to MY symptoms.

Like I said in the beginning of this debate, to each its own, whatever helps you, I am just giving my opinion. I stated all throughout my posts that this is just my opinion or I posted *I think*.

I do really think we need to have a topic for people to go on to read up on the anxiety cause, maybe that would help...Jenn

Why newbie...I never mentioned newbie or is it because I'm a newbie you say that :?

The point I was making is that after re reading this thread from start to finish it does appear that 2 distinct camps are appears that those who side with anxiety are willing to accept that people may still suffer from BFS but those who side with BFS do seem to take a negative take on the role that an anxiety dx provides. Now, I can totally understand that those people who may have been told for years that they have anxiety and been misdiagnosed as they actually had BFS would be angry...all I'm saying is that I understand that but that maybe this causes your starting hypothosis to be somewhat tainted.

I keep reading that somehow anxiety is in the head. I struggle to see how people picture it as somehow in the head. When you get anxious do you feel it in the head or in the body? Surely everybody is aware that anxiety is a state that has a plethora of sensations on the body. I have seen oodles of GP's who all have tried to suggest that anxiety is causing my conditions but not one of these has suggested I am a nut or that it is all in my head....they have explained that anxiety is a condition that is both very real and very powerful.

Crikey only knows why I have got all these twitches, buzzing and general aches and pains. I know they started 4 months ago after the most stressful week of my 40 years and I know they started after a month of horrific depersonalisation and derealisation sensations....yep, it could all be caused by anxiety, yep it could be BFS or a mixture of the two and yep it could actually be my worse nightmare. All I'm trying to do is look at all the options and get some understanding on all this.

PostPosted: November 15th, 2007, 2:45 pm
by whataprettyworld
j7m wrote:I'm sticking with the hypothalamus!

....and wisely sitting on the fence :wink: :lol:

PostPosted: November 15th, 2007, 3:01 pm
by lucy

Angie, I think you are just being really mean now. You said that autoimmune disease can go into remission- clearly implying that Kevintwister's symptoms are simply in remission and that somehow (though you are NOT a medical docter or researcher) you can pretty much determine that everyone here has an unknown auto disease which comes and goes. One study by some dude named Hart and you act like its a proven condition. Isaac's disease as its called is VERY different from bfs by the way.

If you want to help people then keep your owndiagnosis to yourself. or maybe you would be happy if we all went on Neurotin and valium, despite there side effects.

I just had to stand up for Kevintwister.

PostPosted: November 15th, 2007, 3:15 pm
by lucy
Furthermore, from what I have read isn't Isaacs disease serious- i.e. not benign??!!! Isn't it associated with cancer and quite RARE??? Is this an attempt to further freak people out?-that is, by telling them to read that "scientific" report on PNH? Autoimmune disease is NOT benign, hello??

And another thing, BE HONEST: Ask yourselves, have I ever been treated with an antidepressent before over the years? Have I reacted to anxiety strangely before in my life???

PostPosted: November 15th, 2007, 3:23 pm
by lucy
Angie wrote:
Until you can come up with some real, irrefutable scientific evidence that anxiety can cause all of these things, I think this conversation should be considered over, since you are doing a disservice to the people here with a real medical condition...

He sure is NOT doing me a disservice! Actually Angie, you are. By saying that the conversation on this should be closed now is very closed minded! Are you afraid of something- like hearing something that could be true for some?

PostPosted: November 15th, 2007, 3:37 pm
by whataprettyworld
lucy wrote:Angie wrote:
Until you can come up with some real, irrefutable scientific evidence that anxiety can cause all of these things, I think this conversation should be considered over, since you are doing a disservice to the people here with a real medical condition...

He sure is NOT doing me a disservice! Actually Angie, you are. By saying that the conversation on this should be closed now is very closed minded! Are you afraid of something- like hearing something that could be true for some?

Have to say that I sort of agree with the sentiments Lucy is expressing.

It is like all we want to do is look at all different opinions etc to see if any common ground may or may not. I am getting the distinct feeling that some people are beginning to start to feel that BFS is under attack but I certaintly do not have any intentions to do this.

My best mate is a very nailed on born again Christian and I gave him a copy of the God Delusion to read...he refused and said that he knew he was a Christian and that no other explanation is required.

PostPosted: November 15th, 2007, 3:52 pm
by nickc
My vote: not anxiety-related for most of us, just anxiety exacerbated.

PostPosted: November 15th, 2007, 3:57 pm
by Nancy
Well, I AM a psychologist. I have worked in a general hospital setting for about 20 years. I can tell you in all certainty that stress and anxiety can cause all sorts of dysfunction in the body. From the somewhat bizarre (for example pseudo-seizures, blindness) to the less bizarre (for example irritable bowel syndrome, angina). I believe the symptoms that make up BFS could be (still see mostly descriptive and hypothetical explanation in the literature posted here versus documented CAUSE) autoimmune in the final "cause" but that does not mean anxiety and stress have not or do not have a role in their formation, expression, or abatement. An interesting correlate is fibromyalgia. An incredible number of people with fibro have a history of sexual abuse or trauma. Is this coincidence? I don't think so. Our bodies are COMPLICATED and the interactions between mind and physiological function are incredibly varied and not even close to being understood. It is not either/or people. And by the way, the symptoms that have been selected as criteria for obtaining an actual diagnosis of an anxiety disorder are not based on random or anecdotal information. They have been derived from empirical methdology. While the Anxiety Centre's list is a bit overinclusive, if you want to know exactly what psychologists use to determine such a diagnosis, look it up in the Diagnostic and Statistical Manual of Mental Disorders.

PostPosted: November 15th, 2007, 4:02 pm
by Jennhaz
OH my ears my ears...God Delusion...Ok now I certainly have to leave this post... :lol: just kidding, to each its own...just like this post, however I will continue to pray for you.. :lol: sorry had to throw that in there.. Lets just agree to disagree and remember we are all twitchy twitchers and we all want the same thing, which is to stop the symptoms. Ya know there was another post on this forum how one feels like they dont want to come back here anymore because when someone posts something positive we sort of go the other way with it. Well, we proved that poster right. We all have differences in opinions and sometimes people are very passionate about what they believe in, me being one, but lets try to take a step back and me included and realize that we are just not going to agree. We all mean well and have the same desire at the end of all of this. Kevin, I am sorry I went off on your opinion and sort of downed your healing process instead of just saying, hey congrats..I do wish you the best and I do wish all of this to end for you. Ok, hugs now..kiss kiss....Jenn

PostPosted: November 15th, 2007, 4:40 pm
by stevepaul
Isaac's is benign full stop. Isaac's caused cancer is benign, it's the cancer that kills you not Isaac's. It's like having a headache caused by a brain tumour, the headache doesn't kill you the tumour does. Not everybody who has headaches has a tumour, not everyone who has Isaac's has cancer. BFS is a mild for of PNH, Isaac's/Neuromyotonia is a more severe form, the two can be differentiated on EMG.

Isaac' is not a disease it's a name given to symptoms based on clinical and EMG findings, just like BFS. Some of us will almost certainly have BFS caused by autoimmunity, but this is in no way serious, or any cause for concern. I have Isaac's/Neuromyotonia it isn't going to kill me.

You can dismiss the findings of some of the bests neurological centre's in the world, if you wish. Were they to find a cure tomorrow how many would be queuing up. Until then, anyone who thinks it's caused solely by anxiety is in a position to resolve their symptoms and I hope you succeed.

PostPosted: November 15th, 2007, 4:50 pm
by Tui
I agree with Lucy's posts - some people here seem like they're trying to convince the rest that BFS is actually an incurable disease and that we should stop fooling ourselves that we'll get better simply by calming our mind. For g*ds sake, we need to convince the medical society to spend their funds on developing that miracle drug which will help us cure the disease that won't kill us.

And all the while we forget that BFS simply means 'benign fasciculations syndrome'. The syndrome part was added in order to catch the other symptoms which we all seem to be experiencing, like buzzing, fatigue, cramps, floaters, etc.

I did go to see a neurologist btw, and was helpfully told that I have benign fasciculations, that many people experience this and the cause is unknown. My neurologist said it could be caused by the food I eat, by anxiety, or some hormonal imballance. In any case it's BENIGN.

Now, who would like to convince me that I actually have a disease that will never be cured?

As for the anxiety not being able to cause these symptoms, I had a friend who lost her husband 4 years ago. Before then she was a healthy and happy person. But she couldn't get over his death and fell into a deep depression which led her to commit suicide last year. When we were clearing out her house we found a notebook where she noted all of the symptoms that depression was causing her to experience. The list was ENDLESS! And yes, there were twitches and cramps on it too. Depression is different to anxiety but it is still psychosomatic.

Jenn, yes it is frustrating when Dr's say it is all just in your mind. My Dr on the other hand wasn't so st*pid to say that and when she mentioned it may be anxiety I asked if she's saying I'm imagining things. She said not at all and that anxiety can cause real physical reactions in your body.

I'm one of the lucky ones here who doesn't twitch anymore 24/7, doesn't get cramps, isn't fatigued, doesn't have exercise intollerance etc. I've improved 95% since this whole thing started and every day I am better and better. Oh yeah... but then I forget... I probably either never had BFS in the first place or am just in remission and will get worse so shouldn't get my hopes up. Right?

I'm not saying that for all of us here anxiety is the cause. What I'm saying is that for some of us anxiety may be the cause. For someone else it may be something else. For example, I think that in my case it is also connected to candida. But I am surprised by people dismissing anxiety so easily without having any factual proof to the contrary. Medical opinions on this obviously differ, as they do in regard to BFS, etc. So how can you dismiss something without being 100% sure that it's something else? Also, any research that relies on just one study or opinion is flawed. We are all speculating here and all kevintwister did was invite us to try something which has helped him.

I think only those who try what he tried, and it doesn't work for them, can say "It didn't work for me". End of story.

PostPosted: November 15th, 2007, 5:19 pm
by kevintwister
BTW, great post Tui. I don't think I need to add to that but I already made this post in the meantime.

So in conclusion many of you are saying that I never had BFS? OK, I am fine with that if BFS only means an autoimmune disorder that causes the same symptoms. Anxiety is known to mimic all sorts of diseases because of the hellish symptoms it puts on us. When I was young I always thought I had a heart problem since I had chronic chest pains and racing heart. I was in and out of cardiologists offices, wore the heart monitor, etc. I went through several doctors until one finally told me it was "nerves" and my heart was fine. I accepted that diagnosis and after that hardly ever had a chest pain again.

I will say that I had every symptom attributed to BFS and severely so. To me my recovery is no coincidence. If this is the conclusion (that I never had true BFS) I have to feel that a LOT of people on this board don't have BFS either. They have what I had. I have had a lot of PMs from folks telling me that their cases are so similar to mine and they know they have anxiety, stress, and worry problems. Many have thanked me because they feel I have given them a place to start. The good news for those folks is this is fully reversible for them.

Those are the people I was reaching out for when I made my initial post. I see so many of them on this board by the tone of their posts. I didn't come here to cause a debate or belittle anyone that think they have something else. I came here to help. I didn't have to do so because I know it's not healthy for me to even be here.

For those of you that feel you have something else, and not anxiety, please understand that anxiety is HELL and that it CAN produce every symptom attributed to BFS. Don't try to make it out to be anything less. There is no such thing as "it's just anxiety". Anxiety is a real psychological and physical problem and the worst thing I ever went through in my life. I wouldn't wish it on my worst enemy. My symptoms were so bad I started having suicidal thoughts when I was at my worst because I was desperate for a way out. Please understand that trying to convince someone with an anxiety condition that they have some sinister disease is only going to set them off.

I just don't want to see anyone else suffer as needlessly as I did. If I would have known what was truly causing my symptoms and odd sensations I wouldn't have disintegrated to the point I did. I am thankful to God and those that helped me everyday that I got out of this.

I just ask that everyone reading honestly look into themselves. Are you a worrier, do you always think the worst, are you negative a lot, do you run to Google symptoms, do you live in fear because of your symptoms, are you obsessed with your symptoms, do you handle stress poorly, have you ever considered yourself a hypochondriac, are you a people pleaser? If you can honestly answer NO to all of those then maybe you do have some other physical cause. If you answered YES to any ONE of those you're probably suffering from an anxiety condition.

P.S. Jen & Angie, please don't take my message as belittling your opinions. I honestly don't see a conflict because I am completely open that there can be multiple causes to the same symptoms. Just because I know anxiety can cause heart attack symptoms, doesn't mean that I don't feel there is such a thing as a real heart attack and people don't suffer those. I wish both of you only the best and I am very sincere in that.

PostPosted: November 15th, 2007, 5:58 pm
by lucy
Kevintwister wrote:

BFS (we all know that one)
BCS (we all know that one too)
ESS (Electric Shock Syndrome) <--glad that one is in remission, I hated those shock feelings that would jolt me awake out of sleep.
FLIWGCS (Felt Like I Was Going Crazy Syndrome)
OTS (Obessive Thinking Syndrome) <-this disease causes you to obsess over your other syndromes daily.
KWUE2HS (Keep Waking Up Every 2 Hours Syndrome) <---this one still comes and goes so is not in full remission yet.
CTS (Carpal Tunnel Syndrome) <--at the height of my AS (Anxiety Syndrome) my hands hurt alot when on the PC.
CES (Can't Exercise Syndrome) <-- I felt like I was beat up after any bit of exercising. This syndrome also made my BFS and BCS worse. Glad that one is in remission. I can now do the elliptical for an hour a day with no problems.
ASRAS (Always Seeking Reassurance Syndrome) <--this one leads to the next syndrome.
CSOHRWS (Can't Stay Off Health Related Websites Syndrome) <--I guess this one shouldn't be on the list since it is no longer in remission. I just reactivated it by just trying to help some folks.
TCBAIHTBSUDS (This Can't Be Anxiety It Has To Be Some Undetected Disease Syndrome) <--Believe it or not, I had that one too. Fortunately that one IS now in remission. If it wasn't none of the above would be in remission and I would still be suffering greatly.

.....could not say it better myself :D :!:

PostPosted: November 15th, 2007, 6:14 pm
by Jennhaz
Ok, I tried to stop all the debating but i guess you guys want to keep it up, so all I have left to say is then maybe you should go to the anxiety forum if that is what you have and is what is causing your symptoms....Jenn