Discussions By Condition: I cannot get a diagnosis.

Wife has seizure like symptoms, but no help

Posted In: I cannot get a diagnosis. 39 Replies
  • Posted By: Kaauzz
  • December 23, 2008
  • 04:21 PM

Im browsing the net because of my wifes seizure like symptoms which have been going on for about 4 years. Doctors told us she was "crazy" and "its all in her head." We have been sent to shrinks and doctors and a neurologist. Who did cat scans, eeg's, bloodwork and nothing came out of it. She went to Shands in Jacksonville for a 3 day stay. Which she had 9 seizures the 1st day. The tests came back normal. They said she wasnt having seizures. I have over 6 hours of video taped seizures and she has had 49 seizures as of this year. There are a few 1st signs that she gives. 1st her eyes get glassy, then she yawns uncontrolabally, her lip twists, then she cries. Her hands clinch tight and she shakes. Her eyes roll in the back of her head. The shaking my last 15 seconds and may go on for 5 minutes. Afterwards, she can not talk for hours afterwards and she can not walk normal for up to two days. She does not pee herself but I have to pick her up and take her to bathroom right afterwards cause then she does have to pee.
We actually went to a neurologist who wanted to put her on seizure medicine. So we did and it wasnt helping. Then she had a seizure in his office and he told me there was nothing else he could do for her. What kind of ***n neuorologist is this? A sorry one if you ask me.
Now I have no job, was laid off, am fixing to lose my house and cant afford a doctor or the medication which dont work for her anyways. We are fighting for disability but they wont pay as their is no diagnosis. She was also denied disability because of her age and education and I have paperwork to prove it. What does disability have to do with age and education?
My wife wants to give up and is tired of not being able to work. She just wants a job and wants to be normal. The doctors are all a bunch of idiots who dont want to look passed their noses to find out what is wrong.
If anybody knows anything, what might be wrong or what might be causeing these symptoms please let me know. I write down everything. If I ever get the money to take her to a doctor I will have a list of stuff I want him to check. Yeah, also im on unemployment, but I make to much money on unemployment to get her Medicaid. I would like to thank the government for screwing us while we are down and out. Makes me wish this would happen to one of their family members. I bet they would get Disability, the best doctors and a diagnosis. Please email me at thuja67766@mypacks.net, my name is Scott.

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39 Replies:

  • Other than the seizures, is she healthy? Does she ever run fevers, or get rashes, or have abnormal bowel movements?
    qwertyuiop123 453 Replies
    • December 23, 2008
    • 11:21 PM
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  • Okay, based upon what you've described regarding the observations of her symptoms, this would be psychogenic nonepileptic seizures (PNES). Realize that her actions are a very real manifestation but are emotional-based in origin. PNES is quite common, far more in women, with proportions reaching nearly 70% by comparison to males with the disorder. The prodrome and postictal phase of true refractory seizure activity does not follow the course demonstrated by your wife and bladder control with continence is not typically maintained with signs of urgency which follow. Weeping is also not a symptom of refractory seizure. The fact that the AEDs or "seizure medications" had no effect is also supportive of PNES. In persons who do not have true refractory seizure disorder, these medications will simply cause drowsiness in some cases and in other instances demonstrate no effect at all. Typically patients who demonstrate PNES do not experience seizures during their sleep and most often present multiple episodes in the presence of others, such as in the physician's office or at a gathering in the home, etc. The neurologist should not have stated nothing could be done for your wife, when in fact she can indeed receive treatment through a referral to the proper specialist. Understand that your wife's condition is psychogenic in nature and is due to a conversion disorder, which requires psychiatric intervention. Remember that the activity you observe is quite real, but not due to any type of abberent electrical discharge in the brain that is normally the causative factor in refractory seizure activity. The key is determining the underlying cause for the somataform reaction. Best regards, J Cottle, MD
    JCottleMD 580 Replies
    • December 24, 2008
    • 03:19 AM
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  • How old is your wife and is she on any medication other than the seizure med? Is she on any birth control at all? Was she prescribed antibiotics? Has she ever had an head injury or was she in a car accident prior to these episodes? Pease hang in there and I hope you find more compassionate docs to help your wifes condition. Best wishesDOM
    acuann 3080 Replies
    • December 24, 2008
    • 03:54 AM
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  • Dr. Cottle may be right, but I also know that your wife may have undiagnosed celiac disease, which can show up as "seizures," but when hooked up to an EKG, it does not show up as a classic seizure. I had a very edifying talk with a sleep disorder specialist about this very thing just last week. So yes, psychological seizures are a real possibility, but other medical causes have not been ruled out.
    aquila 1263 Replies
    • December 24, 2008
    • 03:08 PM
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  • Thank You very much Dr. J. Cottle for your reply as this has helped me understand why the doctors had tried to send is to psychiatrists. I wanted to know why as she is not "crazy". Also Thank You for the informative information. I will be doing some research on psychogenic nonepiletic seizures. I knew the seizures were non-epileptic. I was doing research on epileptic medications she was taking to find out why they were not working along with the 2nd generation seizure medication. Seems like most to all of the medications is for epileptic Others asked if she was in a wreck or was on birth control or other meds. No my wife is not on other medications, except, xanex and clonazapaem. My wife was in a accident, but minor in state and I do not think it has anything to do with her episodes. She does not get rashes either.These seizures do happen more when she has stress and stress is definately a trigger as well as when she is tired. I shouldnt say tired, but over-fatigued. Its like this, when we get tired or drained our adrrenaline kicks in, but with her she HAS to sleep or a seizure is imminent. She also gets tired very easily compared to you or me. Cant take her out to an all day event because she wont make it. Also, to add to her symptoms, she does get numbness and tingling in her arms and legs. Like when she wakes up. Does not have to be before or after a seizure.Thank You all for your help. Keep replying I appreciate everyones help.
    Kaauzz 11 Replies
    • December 24, 2008
    • 03:13 PM
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  • Thats strange because I was diagnosed with celiac sprue and am eating gluten free now. My wife eats gluten free because I have too. I was diagnosed celiac about a year and a half ago and changed my eating habits. I understand this is hereditary. No one in her family has it that we know of and my mom wont test for it, but I think shes got it. Mom says shes to old to care,lol.
    Kaauzz 11 Replies
    • December 24, 2008
    • 03:18 PM
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  • Your wife is not "crazy" and having been a neurologist for more than 40 years now and I don't subscribe to terms like that where patients are concerned. Realize that manifestations like PNES are not associated with any type of psychosis that people normally associate with psychiatric disease or disorder. Somataform disorders arise from the inability to successfully cope with some type of severe and acute emotional trauma or a chronic issue that has never been resolved and grows progressively worse as a person ages. Realize that somataform presentations can be thought of as a supplantation or alternative to the more recognizable forms of response or reaction to psychogenic trauma that people experience. Let's use a random example here strictly for the purpose of illustration to demonstrate how somataform can arise in an individual who is unable to cope with, and resolve, psychogenic trauma. Let's hypothetically create a couple who have been married for a number of years and at some point, the wife learns that her husband has been involved in an extra-marital affair for some time. In many, if not most such cases, the wife will lash out in anger and typically seek vindication through divorce with efforts to financially and emotionally ruin their spouse. In some cases, however, certain persons have very critical emotional needs within the context of a marriage that might prevent them from seeking divorce and their general response set to crisis in general is a position more associated with helplessness rather than assertiveness. Such persons rarely possess a strategic or logical approach to such crisis, rather falling victim to the full impact of such a circumstance with no ability to assimilate it into practical life terms. These persons have no reasonable or common outlet within which they can overcome the situation or at the least rationalize the event to some stable point or conclusion. In these cases, the person's inability to successfully overcome the circumstances may result in the eventual onset of a somataform disorder. In other words, the failure to resolve the matter from an emotional standpoint creates stress that forms a physical outlet. In the case of PNES, the above hypothetical scenario would permit the affected person to manifest the imminent response by others to try and help with supportive measures of attention and sympathy, while at the same time feel as though they have some measure of control over circumstances in their life that otherwise represent a crisis that is emotionally out of reach. Also realize that the efforts to exert this control and gain necessary social support does not exist with a sense of cleverness or cunning, but rather the result of an emotional break point, beyond which the person reacts with physical symptoms that constitute the response. People react differently to stressors and in some cases, stressors or events which cause sufficient psychological trauma can manifest a response in a variety of ways. While some persons do, in fact, attempt to create a medical history of documented seizure disorder so that a disability claim can be better sought, it is rare that such persons will persist for the period of time such as that associated with your wife's case. Again, my impression here is that your wife suffers from PNES and that psychiatric evaluation might help determine the underlying causal factors of the time period sufficient enough to have caused its development. Best regards, J Cottle, MD
    JCottleMD 580 Replies
    • December 24, 2008
    • 07:24 PM
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  • I wont deny that my wife does have some emotional difficulties. When she was pregnant her ex-boyfriend beat her up and knocked her out and left her on the floor. But this happened almost 15 years ago. She did not start getting these seizure until about 4 years ago. There is also other problems that she has had that I will not discuss in a blog, but are emotional indeed that happened while she was a juvenile. I did not want to take her to any more psychiatrists because I thought they were of no help to a seizure like problem. They are not "seizure specialists". I did take her to one in Orlando who said she was bi-polar. He did no tests of any kind besides a paper test where you filled in the answers. So, she took bi-polar medicine. I then found a neurologist who did at first take the time to run multiple tests and the brain activity showed that she was definatley not bi-polar. This psychiatrist had her on medicine that could have caused her internal bleeding and was treating a disorder that she did not have. She had a reaction to one of her medications by another doctor, and they called the police and had her Baker acted thinking it was a reaction to her medicine when in fact all she was having was a seizure. So, now if she goes to the ER they look at her file and they think shes bi-polar and crazy. My wife is now afraid to go to the ER thinking they will baker act her for no good reason as they did the 1st time. A baker act is supposed to last, by law, 72 hours. I had her out in less than 24 hours with constant contact with the psychiatrist in Melbourne who asked me why she was in his facility as she was not "crazy". I told him the doctor ordered her to be baker acted to cover his butt as he might have made a mistake. The Psychiatrist asked me if I wanted her home. My answer was " I will be there in 30 minutes." Also, Dr. Cottle, about her seizures. When in a seizure she can hear and understand my directions during and right after an episode. Her eyes do roll back and she shakes, but during all of this I can tell her to open her eyes and she will try and often times does open her eyes and it helps stop the seizures. After she stops convulsing, I can tell her to move her left hand and she will wiggle her left hand. A day afterward though, she can not remember what I said or what she did during and immediately following the episode.Thanks for all of your help and information. I so appreciate your professional time you have given to me.
    Kaauzz 11 Replies
    • December 25, 2008
    • 02:22 PM
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  • If I am reading everything correctly, I think my mom does the exact same thing that your wife does. Does your wife have any blood pressure problems? Does she turn bright red before one of the seizures? When she is coming out of a seizure does she have an extremely bad headache and chest pain? A neurologist told my mom that she had stress seizures and there was nothing that he could do. We had to live with it. We were told the same things about her being "crazy" and making everything up. At this point in time I think our last option is to get her to a psychatrist. She has fought us tooth and nail for 5 years but my sister and I have finally convinced my dad and this may be our last option. I wish I could help you because I know exactly how you feel. My mom just wants to be normal and go back to work....but......hang in there!!
    Rose2005 1 Replies
    • December 26, 2008
    • 04:05 PM
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  • Based upon your description of activities during the seizure-like activity, this is definitely not associated with any type of true refractory seizure disorder and I remain convinced that this is PNES, particularly in light of her remote history. I certainly understand your position relative to psychiatrists and in some cases, I must regretably admit that they are more suited to the specialty out of morbid curiosity toward their own psychiatric difficulties. On the other hand, I have met and consulted with a greater number of them who are outstanding in the field and I would encourage you to continue your search for the right match to best assist your wife. My opinion here is that you are headed in the wrong direction by seeking out an epileptologist or "seizure specialist" because her actual disorder is not within the realm of organic seizure disorders. The best course to proceed is to approach the underlying emotional trauma that is manifesting itself into a somatoform disorder, in this case PNES. Best regards, J Cottle, MD
    JCottleMD 580 Replies
    • December 26, 2008
    • 10:53 PM
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  • I know exactly how your wife feels. I was just diagnosed last april with Psychogenic nonepileptic seizures. I had tried since I was 18 to convince someone that something was wrong and I wasn't being a hypochondriac. I am 25 now. I have now been seizure free since June. I currently take lexapro and topamax becuase mine are also caused by my migraines. My condition has cost me my life. I have been divorced unsuccessful at 2 degrees (different times) as well as credit that has been destroyed because of no medical insurance. She isn't crazy. That's the hardest part and can actually make the problem worse. If you or her ever need to talk my email is lizzi_me_01@yahoo.com. Please feel free to contact me even if she or u just have questions or want to talk to someone with the same condition. Lots of luck and it will get better.lizz ramsey
    javabean89 2 Replies
    • December 26, 2008
    • 11:52 PM
    • 0
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  • Thank You for your reply on antennas, wifi's and lighting. She did not fly to Jacksonville and we do not live near an antenna. We do have a cell phone and when she was in Jacksonville im sure she was in at some point, fluorscent lighting and wifi's. I would hope this is not one of her hang ups as the doctors do not know enough or probably dont believe all of this could be a problem. We would never get a diagnosis. I will look into all of this as I welcome anybodys insight on what could be wrong. Even though it would be hard to prove all of this has caused or could have caused these problems I will do some research as I take everything into consideration.Thanks for your links and your time.
    Kaauzz 11 Replies
    • December 27, 2008
    • 02:49 PM
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  • Rose, My wife does not have blood pressure problems and she does not get red before or after a seizure. She does sometimes after a seizure have a bad headache. She says she feels like she got hit by a bat. Also, thinking about the hormone situation, she did have a hysterectomy. Im sure I spelled that wrong. Then 8 months later they had to go in and take the right ovary as it literally exploded inside her. But I dont remember her having any seizures before the hysterectomy. But we had her hormones checked and everything was normal. I am starting to think more into this............ Oh and Rose, we have been to psychiatrists and I know what your mom is going through. We dont trust em either as they are for crazy people not people with seizure like symptoms. Why cant she go to a seizure specialist? What can a psychiatrist do for us? I have asked it all and I still im leery about going back. But maybe, JUST MAYBE it is some kind of stress problem. Im willing to go and let my wife tell her whole life story and try some new medication just to see if it helps. What do we have to lose Rose, besides more money. I took my wife, but told her do not open up to these people as they think everybody is nuts and they throw out crazy medicine like its candy. As they did with us, shes bi-polar, no shes depressed, no shes crazy, no shes a liar and on and on and on, but I think the key is finding someone who doesnt have the patients stacked up like they are giving out free Christmas presents to the poor. Some one who really cares. And this is what im going to do. When I take her back to the shrink, im not going to a BIG city. Im going to a small city and im gonna find a doctor who gives half a crap. One who doesnt just care about the money, his beautiful new house and his BMW. These doctors I do think will have more of a personal relationship with my wife. One we can get to know and trust. Im sure they are out there, its just a matter of going through a few idiots to get to them. But I will try a seizure specialist 1st and foremost. Why wouldnt they know more about my wife than a shrink who thinks shes nuts. Why wouldnt they know the exact numbers on seizures and what causes most seizures and what could cause her seizures. I think a shrink looks at everybody the same. 1st of all, your a number and 2nd of all, your crazy. What bullcrap is she feeding me, seeing or feeling that isnt real that I can give her some medicine for today and charge her a ton of money. Oh I could write a book. Anybody want to get with me and tell our stories in a series so we can get some money to pay for the doctors. Oh and call Oprah, she will push our book,lol. We will call our book "Im Crazy for the right diagnosis"
    Kaauzz 11 Replies
    • December 27, 2008
    • 03:23 PM
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  • Thank You very much Dr. J. Cottle for your reply as this has helped me understand why the doctors had tried to send is to psychiatrists. I wanted to know why as she is not "crazy". Also Thank You for the informative information. I will be doing some research on psychogenic nonepiletic seizures. I knew the seizures were non-epileptic. I was doing research on epileptic medications she was taking to find out why they were not working along with the 2nd generation seizure medication. Seems like most to all of the medications is for epileptic Others asked if she was in a wreck or was on birth control or other meds. No my wife is not on other medications, except, xanex and clonazapaem. My wife was in a accident, but minor in state and I do not think it has anything to do with her episodes. She does not get rashes either.These seizures do happen more when she has stress and stress is definately a trigger as well as when she is tired. I shouldnt say tired, but over-fatigued. Its like this, when we get tired or drained our adrrenaline kicks in, but with her she HAS to sleep or a seizure is imminent. She also gets tired very easily compared to you or me. Cant take her out to an all day event because she wont make it. Also, to add to her symptoms, she does get numbness and tingling in her arms and legs. Like when she wakes up. Does not have to be before or after a seizure.Thank You all for your help. Keep replying I appreciate everyones help. Okay, how long has she been on xanax and clonazepam?? Does she take xanax extended release? Does she ever drink alcohol or grapefruit juice?Does she ever miss a dose or has she tried to get off of these meds on her own? BOTH xanax and clonazepam have SEIZURES as a side effect. If her seizures developed within a year of having taken these meds, then I would STRONGLY suggest this could be a direct side effect from the meds. Doctors don't look at side effects - it should be the first thing they rule out, but unfortunately it is often overlooked. I would rule this out before diagnosing her with PNES. Best wishesDOM
    acuann 3080 Replies
    • December 28, 2008
    • 02:40 AM
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  • Okay, this individual is not demonstrating organic refractory seizures of any type and certainly not associated with the type of withdrawl syndrome observed in abrupt cessation of certain psychotropics. I also continue to take exception to comments where it is infered that physicians are, as a general rule, incompetent. Where in the world do people get the notion that we "don't look at side-effects?" Nothing could be more absurd. regards, J. Cottle, MD
    JCottleMD 580 Replies
    • December 28, 2008
    • 03:15 AM
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  • couple of things. does your wife use aspartame sweetner. drink diet soda that sort of thing? aspartame is known to cause seizers in some people. and i would have her heart check out. the heart can directly effect the brains function and cause all kinds of problems. some times a frontal lobe tumor that is very difficult to find can be a direct cause. a lot of times it goes undetected from standard cat scans. i would request a specialist that deals in rare diseses to look at your wife. run extensive tests to ensure no possibility of rare disorders. and if all comes back clean. could very well be psycological. a lot of people dont believe what im about to say but talk to a deliverance minister after you rule out "ALL" other possibilities. maybe a spiritual attack.
    Anonymous 42789 Replies
    • December 28, 2008
    • 03:51 AM
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  • I had a break-down from overwork, extended hours, impossible goals, and my own personal reliance/personal work expectations, as well as severe go-hungry poverty as a child. And yes there was attempted molestation by several perpetrators. Besides continual shaking, foggy thinking, loss of memory, and break with reality, the symptoms of the breakdown and its post-trauma-stress included "siezure-like" occurances almost daily. It felt like warm in pit of my tummy, then a nausea/light headed feeling, a warm rush from the tummy out through the peripheries......, all while my head dropped to my chest, i couldnt keep my eyes open, and then a strange physical lite headedness as it passed. Then i would be exhausted...totally....have to go to sleep. It was terrifying, and went on for several years at that rate. Then a few years at once or twice a week,,,,,, then a few years at once or twice a mo, then a year,,,,,,,, then ,,,,, itds gone!!! To me, it was a siezure. I saw a psych, and had treatment and meds, etc, for abt ten years or so. The worst about it was the fear of it. Absolute terror when i could feel it coming over me. That did get better when i would remind myself, "you've had these.....it wont hurt you.....its ok.....just pay attention to each physical sensation and try to remember them, and it will be allright." the extreme poverty historically, my disability (in my mind) created a feeling of vulnerability, stress. I note you are unemployed right now. Somehow your wife must reduce her stress. Really. Can she run????? Work out? It can relieve the vulnerable feeling.
    loulou 3 Replies
    • December 29, 2008
    • 02:12 PM
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  • Ok, where to start. Im gonna try to reply to the last 3 entries I missed. My wife does not drink alcohol or soda. Cant say she never has, but not everyday or every week. I have heard people having problems with diet soda and other sweeteners. Loulou were you on any medication and did it help? About the medications, my wife was having these seizure like symptoms before she started taking this medication. My wife used to exercise. She walked every day and she misses it dearly. We both wish she could continue walking as she felt great afterwards, but this problem has taken that away from us. Now she gets tired so easily and if she gets tired she HAS to take a nap or a seizure will hit. She naps almost daily. Napping for her is a prevention. Doctor Cottle, I do agree with you and I do not believe doctors ignore side effects. I do believe in my own right, after what I have seen, that when a doctor does not know what is wrong he either gives you any medicine he can that might help, dismisses your claim and thinks you are trying to screw the govt out of disability or he gives up treating you because he does not want to charge the insurance for a bunch of "useless" tests that come back normal and in my case, tell you there is nothing they can do. You, Dr. Cottle probably are different. You are taking time out of your day to come to this site and help others. I dont know of any in your field that are willing to take their OWN TIME OUT to help others. To help others without getting something in return. You get no recognition out of this, but yet you give your professional opinion and I appreciate you. Thank you all for your opinions. Dont stop giving them to me.
    Kaauzz 11 Replies
    • December 29, 2008
    • 02:55 PM
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  • Dr. Cottle, I found something as of interest to me because my wife was also diagnosed with fibromyalgia. Which I never stated in my blogs. Another problem that was "in her head" according to one of our old doctors who does not believe in fibromyalgia as he told us. Im gonna paste a piece of this article which I found by googling PNES. I think it was the 1st piece you come across and was released in October of 2008, which was a scientific study. Latest Research In his latest study, Benbadis and colleagues examined the relationship between chronic pain or fibromyalgia and psychogenic seizures. They designated two groups: (1) patients who had been diagnosed with fibrolyalgia or chronic pain, and (2) patients who had a seizure during their visit, either in the waiting room or in the examining room. Benbadis et al. derived their data from the records of all patients evaluated over 5 years in a single epilepsy clinic for refractory seizures as well as through EEG/video monitoring. In the first group they identified 28 patients with a diagnosis of fibromyalgia and 8 with a diagnosis of chronic pain. After EEG/video monitoring 27 were diagnosed with PNES. In the second group they identified 13 patients who had a “seizure” during their clinic visit. after EEG/video monitoring, 10 were diagnosed with PNES. “These findings suggest that a history of fibromyalgia or chronic pain” and the occurrence of an episode during the visit both have a high predictive value (75% each) and a very high specificity (99%) for an eventual diagnosis of PNES,” said Benbadis. He speculates that the association between chronic pain and PNES may be “because chronic discomfort can cause psychological distress, which may result in PNES.” He also points out that another possibility is that “fibromyalgia and chronic pain are loosely made diagnoses that are largely psychogenic in themselves.” Whether fibromyalgia and chronic pain are largely psychogenic in nature remains a highly controversial subject. Some researchers believe fibromyalgia is a disorder of central processing with neuroendocrine/neurotransmitter dysregulation. While others in the medical community strongly believe fibromyalgia and chonic pain are psychogenic in their etiology since there is no clear underlying medical cause. Currently, the rift between these two schools of thought still remains. I know you know of the statistics. Your an intelligent person, this just suprised me.
    Kaauzz 11 Replies
    • December 29, 2008
    • 03:24 PM
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  • Loulou, thank you for sharing your story with us. By telling it, you are helping others. You are an extraordinary person. Good luck with everything! :)
    Felsen 510 Replies
    • December 29, 2008
    • 09:21 PM
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