Munchausen by Internet: Faking Illness Online

Not open for further replies.
Interesting thread

I have known a few people over the years that always had the same problems as someone else, ONLY WORSE. I never really thought much about how easily this could spill over onto the internet. I guess the anonimity would make it very easy.

Though I have had some rough issues over the years and recently, joining this web site has helped me remember that there is always someone else who truly does have it worse.

I guess this is one of those things that reminds us that we must ALWAYS be careful about revealing too much personal info, especially the younger members. The web is full of all sorts of people.

I received an e-mail with a side by side picture a month or so ago. One side showed a teenage girl typing sweet things and describing herself on the computer. The other side showed a side view of a fat naked middle aged man describing himself as a good looking teenage boy and proposing that they meet. Every young girl should see that picture.

All this said, I still appreciate the support I have received and will continue to try to support others with the faith that most people visiting a site like this are decent.

i think ive got a little bit of that. i was a schizophrenic with a psychiatrist once.

Munchausen Syndrome...

Just posted a lengthly story (somehow lost it and just as well!) about the above and my own chilling "outside" experience encountering a woman with this syndrome for whom I had/have no sympathy, So, briefly (lest I loose this one) I confronted this woman who had no business in a group I was attending for another disorder (rather a creative coping mechanism). Simply and steadily I said to her "You know you don't belong here. I peg you as a Borderline and suggest you find yourself an AA meeting where you'll do less harm". She never returned. Everyone should take heed to Bernard's post about "Clues to Detection of False Claimes". The net not need be that dark. Go Home! Laurie
I belong to a "true crime" forum, and one of the original moderators was of this ilk. She asked all of her friends on the board for different amounts of money in the form of small loans ranging from $20 to $3,000 for things such as meds and rent. She asked each of us to keep it completely private. Thank God some of us couldn't keep it a secret. Lol. Actually, it was her odd behavior that led us to breaching our confidentiality. Once we realized what was going on, we all met in a side server and talked. She told us openly on the forum that she had a miriad of health problems and privately that she was near death. To add insult to injury, she told some of us that her daughter had just died and others that her mother had. Our loans were going towards funeral costs. One moderater gave her $5,000 and a plane ticket. She was outed and permanently banned from the site. Very sad, but very true. The nature of many Internet message boards is the fact that you meet up with many "shut-ins" (such as myself- please take no offense). We should be kind to one another's gentle souls and not take advantage.

I don't, off hand, remember who responded to my only other message here with a great deal of strength. I've been very strong all of my life, and I have to admit that adult onset epilepsy has truly been devastating; however, I am planning a major comeback. It's just taking some time. I've suffered injury after injury. My point is, I don't want sympathy, but a little empathy now and again isn't so bad. :)
Hi Mellissa - I feel as strongly as you do about Munchausen by Proxy Syndrome. While I know it's an illness, I have no compassion for these people and usually I'm always in anyone's corner ill or not ill - just as long as they don't hurt anyone. Your story about this woman was mind blowing! Disgracefull.

I also have been very strong all my life - battle after battle - but nevertheless reigned. I also have adult onset Epilepsy (added to two other disorders) and for now I'm a "shut in as well". I've sustained injuries from Epiliepsy, nearly poking out my eye on two occassions. This is what frightens me most about E. and memory problems. You have all my empathy! Laurie
Don't hate me

Ok, I don't have epilepsy, just have a thyroid disorder and take aldactone for blood pressure. I do have Ehlers Danlos and about 6/7 years ago I KNOW I had a seizure. I have flunked 2 eegs one as a child and one as an adult. I have often wonken up with that every cell in your body hurts feeling and well...I hate to say it but went threw a LONG period of time where I thought God was trying to contact me in some way....:clap: I am pretty sure I have some sort of seizure disorder. Most of the doctors I have told this to (I leave out the god part) just look at me and do nothing.
Why am I telling you guys this..cause I want you to know the truth. I think I have a seizue disorder or something is wrong. No meds to help me have been given, I think the Ehlers Danlos scares them. Anyway hope I can stay and don't want you all to think I have Munchausen. :paperbag:
For me Epilepsy is just a label. My daughter has seizures. Call it what you want, but it has been awful to deal with (and we have only had to for two years).

If you have a medical problem that has caused you to have a seizure...Welcome. I don't care if you have a medical problem without seizures.... you are more than welcome to use the information gathered at this site to help you. Especially if doctors are just looking at you and doing nothing.

We were told my daughters were all psychological. Angers me no end, that after a 20 min interview that conclusion was made by a most reputable teaching hospital in the nation.

Perhaps in your introduction you could explain what Ehlers Danlos is.

I sure wish God would contact me and explain a few things. I'm listening....
This made me laugh, but I suppose there are people who do this, Ive heard of the disorder, but I thought it was when a parent abused a child to make them sick in order to need medical attention, to then get attention in turn for themselves? Maybe there is two different kinds?
"Jesusinthehouse" have you had an mri too, or went to an actual neurologist?
I had a bad experience years ago when I made a random appt at some clinic by a hospital and ended up being seen by two med students. This was in the beginning years of my "episodes." Well, in short they accussed me of being on drugs when I tried my best to describe my symptoms to them! It is a long story from there.... (no I dont have munchhausens either :) To make a long story short, my actual neurologist that I have now doesnt even bat a funny eye at anything I told her, her think Im weird even :) She just listens, tells me what she thinks it is (if I remember right :) and tells me it is "common" or "normal" those types of comments she gives in return, and has never accussed me of being on drugs thank God! (Although I do take medication)
Anyhoo... just wondering if you havent went to a specialist, you might not be getting an acuarate diagnosis. Just a thought, it happens, I know because it happened to me, and Im sure it has happened to others as well.
No MRI. when I was a baby I was given an eeg and was said to have (direct quote from my mom who was in the mental health/rehabilitation field) "tested and found to have cross dominance in vision and brain activity." I have always been wired for GOOD GOD WHAT AM I GOING TO DO NEXT!!!!! LIVE IS SO HARD. But I don't act like it. When I was 20 or 21 I was hit in the temple with a full unopened can of beer and went to the hospital for 2 days then passed out 1 week later and stayed in the hospital for about a week. They did an eeg with the flashing lights and it took about 1 hour to do. I flunked but was young and said nothing to my husband....we were newly married and I feared I flunked the eeg because I was mentally ill... I was told I had post tramatic stress disorder by my sisters psych. doctor (she has it also) and then here is the big one. about 7 years ago during physical therapy for a sports injury I am pretty sure I had some sort of seizure. I thought I dreamed the whole thing...The worst part is it would have been great if I would have just moved or yelled a bit but it seems....I did not....I got on a thought pattern. No kidding I I I am not sure but I think I discussed or yelled something about bowel movements...good god. I know I could smell them and they seemed to be everywhere. Next think I know I am picking up my kids at school. I to this day am not sure THAT is what I spoke of...all I know is the PT lady was a bit shocked the next time she saw me and what ever I said I said it loud enough for others to hear. Anyway what do you all think...I figure TLE??? I do panic and my tummy does roller coaster often but I can divert my panic. Got to go...I hope this was not to gross to tell you all if so I will remove post.
Robin - As you know with Epilepsy...there are all types. I have Temporal Lobe Epilespy (which I'm learning more and more about) Many of us have Tonic/Clonic Seizures which is how I like to define my state rather than the defunt Grand Mal's. Tonic/Cloinic is more than just a euphamisim for Grand Mal - it really explains the two stages of seizuring.

I have Temperol Lobe Epilespy which mirrors sysmtoms of two other disorders I have. What a quandry! As it stands with me, now, "labels" cannot identify who I am no longer.

I've lived with being labeld most of my life and now I just have to accept myself as a person who's "multi-faceted". That rings rather nicely, don't you think? I don't need to live with or accept yet another lable - Epilespy. Simply put, that I have seizures suffices. Epilepsy, a term that goes way back has more stigma attached to it. Bringing it down to seizuring makes sense to me, especially since I can't afford another label! I'm in sync with your thinking on the matter! Always - Laurie
Last edited:
Oh! Shame on those doctors who accused you of being on drugs. Maybe, they were tired working the late shift and felt like they were on drugs themselves. Fun aside, I've heard of people with serious disorders being asked if they were on drugs. I for one, and I can't tell you how infuriating it was. To be dismissed. Being on drugs? Such an easy answer for them when, for whatever reason, they don't want to explore the complicated. If reading your post correctly, it sounds like you're in good hands. My psychiatrist is also a practitior of Neurology and while I'm very comfortable with him and think he's a fine doctor we have issues as to whether Neurofeedback would benefit me since I have two other disorders. We'll see. But at least he's not one of the quacks I had been accustomed to. Always Laurie
Hi - I have PTSD and Temporal Lobe Epilespy. Sometimes, I wonder if my PTSD dreams will ever go away, though they have lessened over time and the impact is not as great as before. About TLE. An MRI and discussion with my neurologist determined my diagnosis. It's a very complicated, almost mystical form of Epilepsy, and really requires that you learn as much about it as you can. That's my two cents! Best - Laurie
I think the drug question is one they must be required to ask, because Rebecca was asked that on her first trip to the ER. She was also asked about her sexual activity, which made her wince a bit.
Ehlers Danlos 3

Hi: I have Ehlers Danlos 3...the good kind. I was diagnosed by Dr. Michael Gambello (google him, he is smart). Pretty much I am like the
Cirque du Soleil preformers but at age 43. I can (no kidding) hold my hands in front of myself link my hands and flip my arms over my head backwards (like jumping rope backwards) and end up with both arms around my rear. I can pop my hips and my shoulders out of joint :woot: and my skin in some places is very stretchy but that could be age. I can the toes next to my baby toe and push them backwards and they will lay flat against my foot... really this disease for ME is really cool. I think it is funny. As for the PTSD I have not been formally diagnosed with it, it is just what my sisters psyc. dr. said, but it makes sense but really I don't feel I have any real excuse for having it. Yes I have had some really strange things I experienced and was not treated well as a child but it was not as bad as like the book "Singing Songs" by Meg Tilly. Others have had it worse. Pretty much I am fine and don't have any problems unless I don't get enought sleep, food or if someone yells at me really bad. Anyway enough about me :paperbag:

Hi, we seem to have a few things in common. Originally I was diagnosed with panic disorder, and possible ptsd as well about 13-14 years ago.
It was considered some years later by my doctor at that time, that some of my "episodes" sounds more like seizures, yet I discounted this myself, not knowing enough.
Yet, I knew in the back of my mind, that there was more it to it than panic attacks, I always felt there was something going on inside me well out of my control physically. Hard to explain.
And as we all do, I found ways to live around the things that happened. At some point it got worse, I had a bad one in front of my son, and even I knew that one was in no way a panic attack.
Finally I ended up getting an mri, which showed I have mesial temporal sclerosis, two lesions, and atrophy on the right, and possibly bilateral.
(I dont get the possibly part on that though?)
It is all still very confusing to me sometimes.
As I explained in another post, the doc says (both my neurologist and reg doc) that these disorders often go hand in hand in people with temporal lobe damage. Although I can honestly tell you that I have had enough trama in my life to make me believe its all nerves, panic, trauma reactions. But then I am being told otherwise too, medical proof, and sometimes I still tend to just think Im "Nuts" :)
Although I had a head injury where I was knocked out and had slurred speach for two weeks back in 89, I sometimes am still convinced that it was all the stress and trauma that caused the mts! As silly as that sounds.
They just seem so related sometimes. I too, have memories of these instances (married to an alcoholic bipoloar is all I wish to say) that do not want to leave me, and it is usually waking from a dead sleep in the a.m. that the memory is on my mind, so it is not as if I am trying to remember those things. So I think I understand what you meant by that.
I dont wish this on anyone, never would. As I also realize there are others here struggling more than I, with tc's as you get, I luckily do not have those, although my neurologist says I am at risk. But, so far, so good, none of those.
I have an appt tomorrow with another doctor that my doctor wants me to see. She is not a coucilor, but an MD, but my doctor says she is great to talk to, and may beable to help me sort out what is what to some degree.
I recognize some seizures, but also still believe I do have panic attack (not sure) and its frustrating to not know the difference, when the symptoms overlap one another.
I like what you said about accepting yourself. Inspriring to me :)
This conversation is probably ended up in the wrong catagory, lol, but I am glad you posted and shared. I think I may understand you a bit, and vice versa.
Oh, and about that first time I tried to tell the whole story to those two med students, yes I understand that question being criteria or whatever, however they didnt request any tests, and even after I told them I didnt do any drugs, on my way out one of them told me to stay away from the crack!
I was so... embarrast that it convinced me that I was just plain nuts, and I didnt seek help for another few years! I saw a phyciatrist for many years who started me on the diazepam, and treated me quite well in fact. He always said that I seemed completely sane and rational to him, which was nice to hear comming from him :) He also believed I was suffering from probable seizure activity as well, but oddly never suggested an mri either.
Anyhoo, I have a diagnosis. But you know what, my husband still believes it's all in my head. He will take me to any appt. get my meds, etc. but he doesnt want to know anymore. He thinks the hospital neurologist, and my neurologist both made up the story of the damage to my temporal lobe to make money off of me!
But common logic tells me otherwise, lol, as what money is for them to make, none! In fact it was my neurologist who suggested that my reg doc. continue to prescribe my meds, as comming in to see her that often would cost me more money.
I dont have many to talk to here in the real world about this, so sorry if I bit long winded here. But ah... it is a relief to have a place to talk, and to have others who relate, or at least understand in some way.
Thanks for listening, and sharing :)
Totally get it

JLynn : I totally get the husband thing. Mine still does not know all that went on during my event 7 years ago mostly because he was out of town and I kept and keep my panic to myself because he just flips out over the thought that someone or something may rob him of his sweet baby. Only good thoughts...I must say it does work. When I bring up my tummy rising sensation or he notices me jerking on my right side after someone has yelled at me I notice he just cant hear about it. For him It is like I am insulting myself by saying something is wrong with my brain.... He flipped when I flunked my GTT for diabetes and he wants to hear nothing about the possiblity that I may have any type of brain damage because I think he knows that my mom did it to me. Don't get me wrong he loves me he is just scared. I know I can handle things right now, exercise releaves much of my anxiety, helps me sleep keeps me focused. I self talk after my dreams and I am careful just to enjoy the life he has provided me. For now I am ok but I do need someone to talk to also. :pop: I added this because I thought it was cute. Thanks
It sounds like you have a pretty good "check" on yourself. Trauma is a relative thing. Some people can handle more than others. Somes "systems" are more sensitive despite any kind of abuse. Then we have to "define" was abuse is for us. Anytime you wish to talk you can msg me Cinnabar
:twocents:Thanks, I am trying. Patterns, I get stuck in patterns. I seek them. I really started this looking for meaning in everything after the last wack in the head and to help me not think about the uncontrolled verbal insident that I mentioned above. Really, I am not crazy, I sound crazy but really I am not. I also stopped eating and that made me seem very carzy. I am at a good weight now and avoid staying up late I don't drink or take drugs and I exercise daily. This helps, it keeps the paranoid feeling from taking me over. I often wonder if my thyroid meds have something to do with this??? Anyway thanks. :twocents:

I would still seriously recommend that you see a neurologist, and get an mri.
It could be any number of things, best to rule out anything serious, and/or find what might need treating. And another eeg would be in order also, imo.
First things first. If they find nothing at all in those areas, then go from there, complete workup, bloodwork, hormones, etc. If nothing turns up in these areas, then maybe see a good therapist, as you may have a chemical imbalance as well that could be helped as well.
Also, do some research on your medication online, as well as talk to your pharmacist (they know more about the meds than the docs do most of the time).
Okay, good luck!
Hi JLynn - Sorry it's taken so long to get back to you but I had a recent seizure and two "side kick" disorders joined the party after my seizure. I've not heard of Mesial Temporal Sclerosis. Would be interested in hearing about it. Having Temporal Lobe Epilepsy, I've been rounding up as much information as I can about it. Am exploring Neurofeedback as well but my psychiatrist, who also, practices Neurofeedback says I'm not a candidate having Bi-Polar and DID conditions. His quote: I'm too complicated a patient. Next session I will be asking why, and draw out the specifics.

You mentioned trauma. I don't know how it relates to your MTS but with my TLE (initials abounding!) the cause of TLE is related to early on tramua. Psychological and physical. Tramau stunted the growth of my left hipocampus. 50% less than that of the right. What a frightening site to see on the MRI film!

About panic attacks and seizures. My seizures "always" follow a very unreasonable bout of paranoia, which I suppose causes a panic attac, causing me to hyperventilate. I'm barely aware of the hyperventilating before "out" on the floor. My particular brand of paranoia is due to having a Bi-Polar Condition. Symtoms "escalate" to the paranonia stage. I wish I could provide you with a link, but you could do a net search - Maybe, something as simple as "Panic Attacks MTS Seizures". Then it's so amazing how you can get more specifics by narrowing down a search.

All your questions are signs of a sturdy mind - never mind the foggy aftermath of a seizure - after a few days, we're good to go. I believe you mentioned nutrition. There is the GARD diet. I've not explored it yet but I believe one of the Member Groups discuss it explorativily. How to get to a Member Links>Social Groups which will bring you to the top of the page where Member Groups are listed. (My plug!) My Member Group is named "The Creative Writing Page" where you can write about the angst of it all or anything you wish to write about in creative form. A real friendly place. Sorry, again for taking so long to reply but I've been in a tumble, all the while trying to attend to my Group. Oh. And it's so difficult when someone close to you, espcially a husband, is not validating or supportive of your condition. Know you can kick and scream here and ask all the question you want. You are validated, here. Always - Laurie
Last edited:
Not open for further replies.
Top Bottom