hi all
after readin gmy post today that i posted, i appolgise haleys mema , I have been somewhat confused and out of sorts(99should be off my computer !)
Depending what tests they have alread done.
Sally's idea for VEP would be helpful. I cana imagiiine you all are extremly concerned for her.
Zilla,
when my neurologist brought up CD (after seen her for years and with many positve tests, ) . SHe never recomeneed or referd me to a psyciatrist, which very much confused me. If she really thought this was true. I appreciate they need and should look to ALL aspects whne dx a pateint, especially when they present 'untypical' I wanted the correct treatment and dx.
So I went myself the the psyciartist.
THank you Bio with your explanations. I read what I co uld find a few years ago. I agree how confusing it is.
I hope your granad daughter is well soon.
amo
It's a very interesting topic. The mind is fascinating. It's one reason I was not relunctant in the least to see a psychiatrist when one of my neuros suggested it. Or recommended it, rather. In fact just told me not to come back to see him, and go see a psychiatrist. I know that the mind is very powerful and very connected to how the body behaves. The psychiatrist was on the ball, thank goodness, and led me in the right direction.
I hope you know, Mema, that we are not making any conclusions or diagnoses regarding your granddaughter. We just love to discuss things, and we're very lucky to have a lot of people here with medical backgrounds, like Bio.
We are eager to hear anthing more you can tell us about your granddaughter. I'm going to guess her name is Haley...? A visit with a psychiatrist may be a good idea for her, and I hope you don't take that the wrong way. I often tell others here that seeing a psychiatrist can really help with the frustrating journey to diagnosis.
If CD is the underlying problem, she really needs one, and there is no shame in that, of course. If a psychiatrist sees her and determines her problem is organic in the purely mechanical sense, and not related to CD, that will help you get the help she needs, too.
Feel well, all!
Zilla*
You're right...it's important for them to differentiate between factitious disorder (a.k.a., malingering, lying, etc.) and CD, which is supposed to be an unconscious manifestation. Although I'm always a bit confused by that because then they''ll say that the less aware someone is about medical specifics, the more unlikely their symptoms will be. In other words, the more you know, the more your manifestations are like "real" symptoms. Seems like a connection with the conscious mind but maybe it's an unconscious one, if you follow me. Which you don't have to do...I realize this is confusing musing.
Bio
Thanks for the excellent information. It would make sense that the patient may not exhibit apathy in every case of CD. In the article, it seemed to be saying that the apathy was a red flag to clue to doc that this was indeed CD as opposed to malingering. I'm sure you're right that it's not a sign in every case.
You're a fountain of information, Bio, and we're lucky to have you!
I hope this helps, Haley's Mema!
Zilla*
Zilla, what they're referring to in that article is "La belle indifference," that insouciance about what ought to be alarming symptoms. While it can occur with conversion disorder, it's not always a part of it and is not pathognomic for it; some patients with CD can be VERY concerned about their symptoms. MDs used to be able to use la belle indifference as a criterion, but studies now indicate otherwise.
A physician MUST exclude organic neurological pathology before making this dx. There also should be some evidence of "gain" of some kind for the patient: sympathy, special exclusion, reason for complaint, etc. To be CD, the symptoms must in some way significantly alter the person's function, at home, at work, or at play. Many doctors (neuros) are prone simply to dismiss a patient as having CD without even referring that patient for psychiatric evaluation, which is required and should be done in good faith by any rational MD, given that CD is just as serious in its way as disorders of "organic" etiology.
There is a commonality of stress triggers among a good percentage of people with CD, which include a recent obvious event (such as this woman's breakup) (although there is a claim that the precipitating event could be something that happened as far back as a decade or more!), sexual abuse (recent or not), a bad home life, etc. It is (allegedly) far more frequent among women than among men. There is a certain profile of a person with CD that can include a lower level of education or lower socioeconomic status, but that's not necessarily always the case. There may be a family history of CD, as well.
A key factor is that the only neurological functions that can be impaired with this disorder are VOLUNTARY functions. This excludes reflexes, for example; if you're reflexes are pathological, that CANNOT be CD. And again, the MD must exclude other etiologies.
I note here that *anxiety* is very different from CD. Take swallowing, for example. When I'm stressed and anxious (the last time would be about 15 years ago when I was getting divorced and my parents were getting divorced and my dad was placed twice in a mental hospital for suicide attempts), I was...ANXIOUS (obviously). When I get stressed, I can't swallow. It's not a "whoa, I must be dying, I can't swallow" kind of thing; it's a "whoa, my gut muscles and everything are so siezed up, I just can't eat." People with CD can suddenly manifest with an inability to speak or swallow, but they don't know why, don't connect it with stress. People who know they have anxiety and that this makes it difficult for them to eat because of obvious muscle tension do not have CD, they have anxiety. Two very different things, anxiety and CD, in the way they manifest and in the consciousness of the causes of those manifestations.
Bio
Hi! And welcome to the forum!
What a frustrating place you find yourself in. Many of us here are "without a diagnosis" and know how awful that is. But, here, your granddaughter has been given the 'conversion disorder" diagnosis, after much testing, it seems, and you still wait in frustration for some improvement of her condition. We are here for you.
First, a few questions: How old is your granddaughter (I may have missed this!) now? Also, why were the shunts placed? I assume there were some medical issues to start, as they wouldn't give a six-week old shunts due to conversion disorder.
Also ~ you say they did all kinds of testing, and this is great. DO you know what kinds? I totally agree with Sally, that if she is reporting she can't see, your granddaughter needs a VEP to confirm this, or rule it out. Has this been done? Have there been other evoked potentials tests done to see what is keeping her from walking? Or an EMG/NCV?
What do you think is the trouble with her walking? Is it due to weakness, or paralysis, or do you agree that it may be due to conversion disorder?
Sally is right on about getting a psychiatrist's help in this, too, if conversion disorder is indeed the correct diagnosis. It certainly isn't a case of the patient "faking." It is something that needs to be treated, as Amo said.
If you don't mind giving just a bit more information, we'd be happy to help any way we can. Even if it's just to lend an ear to listen to you vent your frustration.
Take good care of Haley!
And yourself!
Momzilla*
Hi,
Your comment on your daughter not being able to see.
I think they can test for this with the VEP. This measures brain response to flashing light stimuli.
If she has a conversion disorder, the brain will still detect and respond to the flashing lights, even though she subjectively cannot see them.
if it really is a visual problem, then there will be no brain response to the flashing lights.
Does she respond to visual stimuli (ie. does she move or flinch if something is coming at her fast). This may be a clue.
Did they really test for this or did they just come up with the diagnosis. If it is conversion disorder, maybe she needs to be working with a psychiatrist/phsycologist skilled in this area to help her overcome it.
Don't know so much on this area, but just some ideas. Hope your daughter recovers soon.
Sally
hi haley's mom,
i hope haley is feeling better today.
i am no doctor, buut in quest for dx;d on of my neurologist was read y to dxxxx me with conversion diisorder (CD)
welllll i knew it owuld have nbeen some other mental disorder if i wa dealing with mental illness , because ii had many positiiive neurologialll exams, mri and even a positiive brain biopsy.
Have you read and researchedd about CD?
As Zilla and chris said, it is as reaaal as any neuolorgial illness. My doctr discribed it comes from the outter portion of brain and subconsion not under the pateints control.
My take iiis it is farther than a n emotional problem.
I ha djoined a support grroup through Yahoo. I encourage you to do so to get support and farther eduateeed.
as chris said many of the dxd cases will in time will provoe to be neurolgoal.
the people i met in the groupe a few year sback where very helpful. Some have impvements and while others struggle for time. I think the soone rthe dx the bette recoveery .
As her mother you can advocate for her and be certain this is the correct dx. Wheather it is menatl or neurological, the correct treat ment is most important.
I wish you well. take care , amo
My grandaughter has been diagnosed with conversion disorder. She came to the beach on a Saturday and by the next day was sick with headaches.etc. She has shunts in her head since she was 6 weeks old. she was in the hsopitals for a total of 4-5 weeks total this summer. She had episodes (seizure types). She has had every test possible before they came up with this disorder. She was unable to walk for weeks but is now walking but she says she can't see. She is on meds etc. The doctors say this will correct it self in time. BUT will it? I has been 10 weeks. From reading some of these posts it seems that this doesn't get better or go away in time. Any suggestions?
Haley's Mema
Yes, I guess my bottom line point is, emotional distress or anxiety or psychiatric turmoil can cause paralysis, but it is the APATHY which is the clue to hysteria, or conversion disorder, as Chris has said.
If someone can't move their legs, this patient in the article had to drag herself to the phone and dial for an ambulance, it should set off bells and whistles of alarm. Sheer panic. If that panic isn't there (a mental state in neurology known as ""la belle indifference"), something odd is happening. Could be a tumor; could be conversion disorder. (He did have one patient that was struck blind and had the same apathy, but a tumor was causing both the blindness and the affect. That's where the neuro exam comes in.)
I'm getting way off base, now. And I'm so tired. But I thought it was very interesting. And Millerman, I saw more of your post. It looks like your doc did find some answers for you. Some peripheral vertigo issues? That's a good start. See? Don't ever listen to me. Let me get some good sleep first and when I'm fresher I'll try again!
Good night Gammas~
Zilla*
Conversion disorder is real as you say people with it dont thave any way they can contol the symptoms . Putting it in a nutshell its emotional problems which are internalized and manifest in a physical problem . They generally display apathy but also there is research which suggests that some people who have been dx with conversion disorder do actually developed an organic disorder It is interseting stuff though! xx chris uk