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  #41  
Old 08-20-2008, 10:07 AM
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jesusinthefountain


My . Like JLynn has suggested, see a neurologist and get an MRI. From what you've described, it sounds like temporal lobe epilepsy. Also, you mentioned your thyroid, when was the last time you had your TSH done? I also have thyroid problems along with epilepsy and bi-polar, so all of this together is difficult to manage at times. My daughter (she's 25 yrs.) was recently diagnosed with Hashimoto's disease. Before she found the right dr. & right diagnosis, she said she felt like she was going crazy, paranoid at times! And she doesn't have epilepsy. Hormones are powerful on emotions!

Cindy
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  #42  
Old 08-20-2008, 01:08 PM
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Oh, yes! It's so imporatant to see a neurologist, get an MRI and then discuss results with him/her. I have temporal lobe epilepsy and Bi-Polar as well. My psychiatrist and neurologist keep in touch with each other concerning my two conditions and am so grateful to have two doctors working together on my behalf. It's ideal and I'm lucky. But back to the beginning...MRI and discussion with neurologist a must. These two simple steps upward can help you from falling down the stairs! Always Laurie
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"I'm not only my spirit but my body, and who can decide how much I, my individual self, am conditioned by the accident of my body? Would Byron have been Byron but for his club foot, or Dostoyevsky Dostoyevsky without his epilepsy" Somerset Maugham

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Temporal Lobe Video
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  #43  
Old 08-20-2008, 01:52 PM
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NOT MEANING TO SOUND PARANOID....How did you know I fell down the stairs.
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Old 08-20-2008, 02:48 PM
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Originally Posted by jesusisonthefountain View Post:
NOT MEANING TO SOUND PARANOID....How did you know I fell down the stairs.
Umm - that is actually a "Quote" just like a quote of
taking two steps forward and being knocked 3 steps backwards.
Unless I could be wrong ~ Epilepsy, Temporal Lobe Epilepsy,
does have a unique ability which also includes 'psychic'
abilities in the 'aura'; but I highly doubt that was the case.
  #45  
Old 08-20-2008, 02:49 PM
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Jesusinthefountain, I think she was using the term "fell down the stairs" as a metaphor!
But thank you, I am laughing so hard, not at you, but with you. I needed that laugh today. Your funny, and its okay. Now call a neurologist, and get in with one a.s.a.p
for your own well being.
JLynn
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Old 08-23-2008, 08:41 AM
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I'm familiar with this - its one of the things I was accused of having when I first began seeing doctors for were later determined to be seizures. I had a few doctors tell me that I needed to stop acting up and get back to reality. I finally found a break after discussing my rapidly changing vision problems with an optometrist who told me that I needed to see a neurologist
  #47  
Old 08-23-2008, 09:40 AM
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darkmarkshark (I love your on-line name!) I don't know the "whys" of some doctors. I've dealt with some who should not be practicing. Years ago...I wish I still had the article. It was in Atlantic Monthy and the article was named "The Wounded Healer Syndrome" Just the title summed up the article. Wounded Drs gravitate to healing professions because they have been wounded themselves in thier lives. However, this is no excuse for doctors "cowering" from exploring patient's conditions. Many doctors sum up Chronic Fatique Stress Syndrome as being psychological (it's just in your head). Wow! It took an eye doctor to vere you in the right direction! Yeh! for him...We have to take charge of our own health and unfortunatley that means "hunting down" the right doctor. I assume you've found yourself a good neurologist. For the most part, "they're the tops. Good luck! Your fellow seizure sufferer, Laurie
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  #48  
Old 09-25-2008, 09:01 AM
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Looks like the admin of another forum had to deal with a case of Munchausen by Internet recently:
Quote :
This afternoon I posted a warning on the journal post concerning the supposed story of a 10 week old dying in a friend's care over the weekend in which the mother came directly online (did not pass go, did not collet 200 dollars) and relayed the tragic story. Anyone who cried fowl (and I do mean big fat turkey) had their posts immediately deleted while the said poster was supposed to be offline making funeral arrangments. If that didn't confirm the fish story what would? Well apparantly there was still an outpouring of sympathy even though the poster wasn't even supposed to be online in the first place.

So how can you not be gullible? First, one must know the perptrator and what they look for. I've been on the Internet for more than a dozen years and I've seen all this before and it plays out the same way. There is always a pattern. It isn't always about money (sometimes it is) mostly it is about being the center of attention and gathering up a following.


Identify the Nature of the Attention Hound

1. They are nearly always new members. A tragedy relayed to the public board at large within a few weeks of posting is the first sign of a fish story.

2. They seek boards in which the population is trusting and always forthcoming with the virtual hugs and sympathy and prayers. In other words, an atmosphere of nearly blind trust. It is much easier to infiltrate an enormous loose community like Cafemom than it is to wheedle one's way into a private group of a closeknit community.

3. They always say that the Internet is how they are "making it through" and that it is the "only thing keeping them together" and that "without the support of all the people they would be a mess"

4. They will claim to be "gone" to take care of whatever situation it is they are claiming, but they are active elsewhere and clearly online and posting in another place.

5. They seem to have Internet connections in the strangest places. Internet connection in the hospital, for example, or the house of their sister's cousin's father's former roomate.

6. Mysterious "relatives" seem to pop up to defend them and use the same IP address or the same username and claim that so-and-so gave it to them and "OMG all this stress and negativity is causing her to have a stroke."

7. They take on the guise of the sweet and innocent but tragic life. Something is always going wrong. They join a lot of groups and post nice things though never enough to really get to know them, but just enough to get a small backstory going. Some even go so far as to post other people's pictures.

8. Their "bad luck" gets progressively worse and worse until it culminates into a death or terminal disease.

9. The non-ameteurs are good. Very good. They are experts in manipulation. They have their stories well planned out with verifying details, pictures carefully chosen, and they first make close, tight knit friends over the course of MONTHS or a YEAR or more to suck them in before dropping the first in a line of tragic events. These people are hard to spot. It is only when a few people start to put two and two together that the story begins to unravel, but not before they are ganged up upon for being so mean to the longstanding member going through such a hard time. Again, a real story is easy to confirm. A web of lies that is well woven is hard to break apart.

10. They use real stories and real emotions to play upon. An attention seeker is more likely to choose death or disease to relay than a story that requires them to keep playing or coming up with new information as time passes. That isn't to say that they don't do so, but death, illness and disease are much more convenient and shocking for that immediate gut reaction. That is what you want from an audience because if given to much time to think there is no effect.


How to Identify a Fish-Story

1. Inconsistency and unbelievability: It can be hard to keep track of the trail of lies that inevitably goes with a fish story. The ameteurs generally do this quite early on. Ages not right. Medical impossibilities. Backtracking.

2. Post tone: A person who has truly gone through something tragic will have a certain tone to their posts, a way of writing, things they say that lend credibility to what they say; and are generally private and not sent to the community at large unless a significant amount of time has gone by. Posts of a lie are contrived, have an eerie balance and have certain elements in this pattern in the present tense: Dear Everyone--Opening sad statment--followed by very vague details--and a closing of 'how am I going to get through this', punctuated by a 'send thoughts/prayers'. A short while later update posts are produced. Real tragic events are nearly always spoken about in the past tense as nearly all of the time it is hard for the person to talk about it and a significant amount of time has passed since the event.

3. Online Activity: Pay attention to when events are supposed to have occured and see if they are possible. If the person is supposed to be in the hospital why are they posting on a thread on a similar site? The reality is that these people are members of multiple boards and don't think they are known.

4. Newspapers and Funerals: Any tragic accident is going to be in the local paper. If there is a death there will be funeral arrangments or a funeral announcement. There was one incident I witnessed in which the story was so good and the member a LONG TIME member made up a story and when someone took up a collection and tried to send flowers the fake story's cover was blown.

5. Passwords: Who gives their online password on their deathbed to their sisterunclemothercousinunclebrother just to come online to post a defense or to relay tragic information updates every half an hour!? No one except liars. There was one real story that I remember on another community in which a husband logged in to relay information several days after the fact under his own name becaues he knew the community (he knew his wife spent a lot of time there) and wanted to say thank you for the letters and flowers. The truth of the story had already been confirmed.

6. Recycled stories: It is not unusual for people to use stories they have read on the Internet or in a book and change a few details. When a prolific community memember or prolific reader says they have seen the story or picture somewhere before, you may want to consider the possibility.
...
A Guide to Not Being Gullible; AKA Beware the Munchausen By Internet
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  #49  
Old 09-25-2008, 11:32 AM
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Chills Bernard thanks for the points. I know Munchausen by Proxy is a sickness but I have no compassion for these people who are predators, stalking down the vulnerable to have their sick needs met. I just cant see past their diagnosis because I've encountered a monsterous woman who had Munchausen by Proxy Syndrome who destroyed people around her and nearly myself. She did have a special allure and I initially liked her but not enough as to keep my guard down.

That was about four years ago when I was new to an "outside" DID Support Group. In a short matter of time. I intueted this woman was not fitting the bill. There was always "too much" going on in her eyes. I could tell her mind was darting, as ours do "do", but in clear, calculating directions. (Unfortunately, here we can't see the eyes behind the type, as I like to say).

I observed her manipulate a very vulneralbe group, even the moderator who claimed to be "integrated", that is "whole" as opposed to being a "fragmented" person. This group had been gathering for years, so this disturbing pattern was set. Being, new to this group, I was not enmeshed in all the cacohony and had fresh eyes and ears. I eventually realized she was faking having different identities. It was as if she were trying on very different hats for show. That concrete.That's not how it goes. She "called" on others to bring out their persona's, which was shattering the group. People were rocking, crying, there was self imposed silence. It was heart breaking and that I was nearly sucked in in the begining burned me even more.

One day she blew it. Her "tell" was that she claimed she "never" went into "denial" having DID. Classic text and expert accounts, state that "denial" is a major player in the sypmtoms", for who cannot, at times, believe they have such a fantastic and incomprehensible condition? There are plenty of days when I say to myself that I just have a "colorful personality".

I eventually, confronted her after the meeting the day she gave her "tell" She also, unfailingly, came across as being proud having this condition. This is very different from "advocating" any condition.

An aside: We are not "proud" that we have Epilepsy but care enough about ourselves and others like us to educate society so our condition won't remain stigmatized. (DID "advocating" is happening in small clusters on the Island but many feel "they" will be taken as a "fake" so it can be cause for isolation and information is not gotten out there. However, I do wear a T Shirt I bought at one of the fairs that says "I Live In My Own Little World ...but it's okay, they know me HERE!)

She kept returning for a while but would never meet my eyes. She eventually left. The group calmed down and were able to communicate with each other. All for the better.

It was a creepy experience and one which angered me greatly. One of the reasons I would never go into a DID Support Site...too confusing and people with Borderline Personalites tend to fake DID for the attention.

This is the first Site I've ever entered. So, I'm a kind of "babe in the woods" when it comes to rules and regulations. Sites have never been my thing but after recently being diagnosed with Temporal Lobe Epilepsy, I searched sites that would have the best stucture for information and interaction and so I greatfully landed here.

The idea, of a predator lurking around in the "dark" of cyberspace is just plain scary, especially based on my experience. It's time consuming and painstakingly detected in the outside world. Here, there could be endlessness deceit. What Bernard has offered us today is invaluable and we should begin being "students".

People with Munchausen by Proxy 'should" seek help but I wonder how that would work being that they are already chronically "seeking help"? While, they unfortunaly seem doomed they are extreemely detrimental to those I'll call their victims, if sucked in.

Bernard, thank you so much for the important points to study. I'll be re-reading it. I think we should always keep "keen" to this issue.

I say "If you don't have an absolutely brilliant memory, don't lie to yourself, that you can lie to others and get away with it for very long." One's "tell" will be caught in time.

I'm a very non-judgmental person but when it comes to this issue I stick fiercly to my opinions and feelings on the matter. I think you all have got that idea!
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"I'm not only my spirit but my body, and who can decide how much I, my individual self, am conditioned by the accident of my body? Would Byron have been Byron but for his club foot, or Dostoyevsky Dostoyevsky without his epilepsy" Somerset Maugham

The Writer's Cafe'
http://www.coping-with-epilepsy.com/forums/f44/
Temporal Lobe Video
http://www.youtube.com/watch?v=deDrV...eature=related

Last edited by Cinnabar; 09-25-2008 at 03:25 PM.
  #50  
Old 09-25-2008, 01:51 PM
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Maybe it is just me


Bernard, thanks for the info, I read it but am still very gullable but not so gullable that I would send someone money. As I said before, I don't have "E" just had a seizure some time back that was thought to be hypoglycemic and then of course the whack in the head that I told about before. My sister has foster babies that have seizure disorders. But here is a good one. I have PCOS and this is really nothing, about 5 percent of the population (female) has it. I do diet and exercise to control it and that is where the seizure came into play with the whole dexamethasone, hypoglycemic thing. Still no big deal but on the PCOS soul cyster message board no kidding there was this woman who posted pictures of her ultra sound of her babies and then said she needed financial help etc... people would PM her and send her money. Turns out the ultra sound pics. were from someone else and she had never been pregnant and everything was just a pitty story for her to make money... sad. This happened about 6 or so years ago.

Last edited by Bernard; 09-25-2008 at 03:05 PM. Reason: yes, I got power back. :)
  #51  
Old 09-25-2008, 05:02 PM
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Information about Munchausen by Internet or proxy should be MANDITORY reading for all owners of messageboards and their staff, of ANY kind of support boards and groups, no matter the disorder.

About 4 years back there was a case I was involved with that fit EVERY description that is listed in Mr. B's post. And the perpitrator was busted by the bogus funeral/death. There was no obit and flowers could not be sent and no funeral home! This was so freaky reading because all those memories are returning and all the BS this person put on the members.

Being a support forum, trust in the poster is a most important factor, but we need to keep one thing in mind, this is the internet and we really don't have any idea who we are dealing with. Fantastic situations do happen to people and as do an unbelievable runs of bad luck. In the the web of epilepsy support forums and groups it happens more often, I think. This is why these insidious individuals often infiltrate and foul our boards with this bogus drama. It's easier to blend in.

Another easy way of discovering the lies is for actual contact. Most of those posting their crap will avoid phone calls and visits because the lies cannot be backed and are too difficult to keep track of in person or real time.

There are signs and warnings, it's our job to pay close attention to details so we can spot them and prevent damage to our groups/message boards. They are very sick people. We cannot help them, we really can't because they don't even see what they are doing wrong.

Please don't stop trusting new members because once in a while some sicko is playing out their fantasy. If you do see something out of wack and you feel concern, don't hesitate to contact Mr. B or any Mod. Chances are we have already seen it and may be discussing a course of action in ways of deaing with problem individuals.

It sad that some people can only feel alive when they create a persona, and hold hostage entire sites with their webs of fantastic lies. Some members become very attached and are so hurt by these actions.
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And live like it's heaven on earth.”


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  #52  
Old 09-25-2008, 05:08 PM
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The site owner added this she's a very wise lady!



Quote :
Edited to Add: First, I am very glad that so many found this post helpful! I wanted to add something, however. There is nothing wrong with a new member posting a horrible story the first time logging in--sometimes that is what they registered for; to get it out. I have done it myself. The difference is that they will nearly always post in a specific group, they have very vivid details, they often "ramble" because they are having difficulty getting their thoughts down, and their posts do not have that weird calm monotone of a story that is made up. Unless the person is a very good writer, made up stories read very hollow. When a real person with a real story is asked questions they answer immediately and their answers do not vary at all even if they are asked the same question by five different people. They do not hedge or evade questions and there is no need to call them on an inconsistency because there aren't any!

It is ALL the elements I talked about together in this article that makes for a hoax; the things that do not reconcile with common sense. This doesn't mean that you won't get taken in by an expert liar, but it will allow you to better avoid the obvious fakes.

Don't be the post police though! I once got accused of being an employee at at a bridal shop pretending to be an bride just to post where I got my dress by one person who was on a one-woman mission to stamp out "people like me". It was my first day, it was a bridal bargains site, I couldn't help it, I was so happy after a dreadful first outing at another place and I gave a glowing report! The problem was that even when I proved I was telling the truth beyond a shadow of a doubt, that one person didn't even have the decency to apologize. She was even rude and nasty when she confronted me about it in the post. Just don't get overzealous, the best thing to do when in doubt is not involve yourself in it. If you are so sure of a lie then say it with grace. And if you make a mistake then do make amends.
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"If you are going through hell, keep going."
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“You've gotta dance like there's nobody watching,
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Sing like there's nobody listening,
And live like it's heaven on earth.”


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  #53  
Old 09-26-2008, 12:25 AM
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It's sad but true, I've been blasted by many as having
it - but once I posted some of the medical records and
facts; it raised such an uproar, and some folks are just
so cruel that they actually snared those images just to
pervert them and make a sport of it!

I find no sport in someone who is ... I don't even want
to go there, especially when I was asked for the latest
report and results (and it wasn't unusual either because
we were all a close knit bunch of folks); but unfortunately
those morons took those images as implied above, and
since then - I ceased to discuss or disclose it and then
backed way off from revealing of who gets what info
in regards to me or my medical status.

I've been burned far too many times severely, Internet
isn't the same as it was 10, 15, and so years ago. It's
become a nasty place and it's a "proceed with caution
territory". There are times I won't even disclose or
state, even when asked; I will often ignore as if I missed
their question on a Live Forum, for I often know their
purpose is to draw trouble and that I often avoid.
For the REAL people only emails me within.
  #54  
Old 09-26-2008, 10:36 AM
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brain, Who has the right to call someone a "Fake" unless many of Bernard's recent points of detection were "constant" found behaviors. I'm so sorry you went through that experience and felt it necessary to retreat.

As I've just said, this is the first site I've ever enterered since being diagnosed with temporal lobe epilepsy, I felt it was necessary to get some "facts" and as I'm homebound, not being able to drive. It's afforded me a plethora of information the opportunity make like-minded friends.

Now diagnosed with temporal lobe epilepsy and having two other complicated disorders to accompany it, I sometimes wonder if there are some people who might think that I have this horrible syndrome. I've decided I can't worry about what other's might speculate. I bring up my multiple disorders when it's appropriate to a post as I'm doing here, for instance. I usually, pvt post friends when feeling in trouble...the interlinking of all happening.

I didn't know sites could be so cruel. I hear stalking goes on in sites, too. But they can't reach their hands out to us from computer screens to twist ours. Here, in this world we're physically safe but "head games" can be equally, if not more, harmful. We'll just keep our heads up high and LOL when people have the need lower themselves.. to making too much of an investment in harming another persons welfare. They must be lonely and very desperate people
Cinnabar
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The Writer's Cafe'
http://www.coping-with-epilepsy.com/forums/f44/
Temporal Lobe Video
http://www.youtube.com/watch?v=deDrV...eature=related

Last edited by Cinnabar; 09-26-2008 at 01:44 PM.
  #55  
Old 09-26-2008, 11:27 AM
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Folks, this topic exists here not to accuse any CWE members, but as a reminder to all that these things do happen. Hopefully, no one has a seizure because of stress from strong emotions (sadness/sympathy/etc.) over what's posted in the forums - especially if it comes at the hands of someone who is disingenuous.

We do a good job weeding out the hooligans and trolls, but it could take longer to expose a Munchausen case, so it's healthy to keep a little bit of emotional separation between yourself and your internet only acquaintences.
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New to CWE? I suggest reading the proactive prescription and epilepsy 101 threads. Also check out this chart of alternative epilepsy treatments and this page on EEG Neurofeedback. More great stuff can be found in the list of the best forum threads.

Would you like to help support this forum?
  #56  
Old 09-26-2008, 11:33 AM
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"If you are going through hell, keep going."
(Sir Winston Churchill, 1874-1965)

“You've gotta dance like there's nobody watching,
Love like you'll never be hurt,
Sing like there's nobody listening,
And live like it's heaven on earth.”


.
  #57  
Old 09-26-2008, 12:53 PM
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Thanks, Bernard. I know I expressed a fierce fear of people who have Muchausen by Proxy Syndrome, seeing what impact it can have on people, including myself.

I think CWE is very structured and would be thourough in its ability to do the "detecting".

This is the first site I've ever entered and am learing (sometimes the hard way) about how things run, but I do have a grasp of it's sincerity and ability to protect members in a variety of ways. While I have no comparison to make in relationship to "any" site, I feel that CWE's system of operations is surperior.

My communication with fellow members will be sound, safe and stress fee. I agree. A bit of emotional separation would be healthy, for taking on too much of a member's weight can only squash your own attempts to keep strong and well.

It would be both sad and ironic if members "hid" out of fear from a site devoted to teaching ways to avoid a stress free life. It's probably wise to put "fear of fakers" on the back burner and carry on in confidence with information under our belt.

Thank you for your reassurance that "in time" these troubled and trouble making people will will be discovered. And I do believe, as I said, we should be "students" of your "tips".

They were organized and an excellent reference source. That coupled with CWE's monitoring should allay any fears members might have of being potential victims. Thank you for the reassurance! Cinnabar
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"I'm not only my spirit but my body, and who can decide how much I, my individual self, am conditioned by the accident of my body? Would Byron have been Byron but for his club foot, or Dostoyevsky Dostoyevsky without his epilepsy" Somerset Maugham

The Writer's Cafe'
http://www.coping-with-epilepsy.com/forums/f44/
Temporal Lobe Video
http://www.youtube.com/watch?v=deDrV...eature=related

Last edited by Cinnabar; 09-26-2008 at 01:18 PM.
  #58  
Old 09-26-2008, 10:15 PM
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I've been a member of the same chat room for 8 years and we've seen it all there too. People come in with stories that you just know are pure BS, and when put to the question easily get confused and eventually tell on themselves by mixing up the details. The downside of that is that it really makes it hard to trust new people coming in that are legitimate, or believe anything that they say. The best policy is to just remember that this is the internet. Don't let your guard down. The real deal and genuine friends will show themselves over time.
  #59  
Old 09-27-2008, 06:49 AM
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Just for the Record in regards to Posting and Remarking Medical Records ....



As Bernard quoted:

Originally Posted by Bernard View Post:
Folks, this topic exists here not to accuse any CWE members, but as a reminder to all that these things do happen. Hopefully, no one has a seizure because of stress from strong emotions (sadness/sympathy/etc.) over what's posted in the forums - especially if it comes at the hands of someone who is disingenuous.
Is the reason why I posted what I posted
below for a mere example of what people
CAN do to you if you do such as what I
had done. People can railroad you down,
take your records, alter them, manipulate
them, and yadda, yadda, yadda - all because
it is the "internet". They can go so far as
to their "own Troll Gossip" corner as well.
So be careful in what you post and say,
it can go against you, or turn against you,
and even worse, be broadcast all over the
place in this internet world once it becomes
"Public Domain" - your Privacy now becomes
invaded and widely known!

Then on top of it ---> people also take
advantage of these reports to apply it
upon themselves; thus making it look and
appear that they have it too, hence the
Munchhausen by Proxy Syndrome, and I
must add, some will go so far to even try
to "out do" with what you have if they could!

AND WHY? As far as I'm concerned, if they
want it that bad, they can have ALL of MINE
and all of what they claim to have ... because
I certainly do not want it! THINK about that
for a really good long time!



"Mucho-By-Proxo" Illustration
presented to you by truly yours:
Jelly C. Syndrome


There are folks really out there who troll, I
mean lurk, well maybe they do troll and lurk
among the Health Boards all over, so they
can learn much about this and that as much
as they can, gathering up much doo-doo as
possible, so when they go to their "home base",
I mean their regular chatty forums, they can
then lurch out and come as "Oh woe is me,
I've got Humpitydumpitytisis - it's so rare that,
only those with B+ and of pure Asian and British
descendants have it, and there's no cure..."

And they moan, and groan, and go on and on
and before you know it their egg shells are all
over the place, and egg innards which have been
splattered is starting to raise a stink ... (have
you ever smelled a rotten egg?)

Suddenly people start to back off, and they're
not getting the attention that they want anymore,
so they have to come up with something QUICK!

"OH! The good news, their Humpitydumpitytisis
went into remission!"

In other words, they're trying to cover a stinky baby's
diaper by placing a clean baby's diaper without removing
the dirty diaper... sooner or later, it's going to stink
all over again....




(Hope this brings some enlightenment into a new
realm and perspective and a lot of chuckles along
the way ...)

Last edited by brain; 09-27-2008 at 06:52 AM.
  #60  
Old 09-27-2008, 08:27 AM
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I was once on a forum where a girl was obviously about 6 different posters, and used medical conditions to prove that she couldn't "control" her making nasty comments to other posters.

So I made a post saying that condition didn't sound right when applied to her behavior and made up another condition and saying why in my experience I thought it sounded right. And wouldn't you know, that was a condition her doctor had talked to her about possibly having. You think she would have googled to see if it was real before making statements like that
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