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Tokahfang

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This description is based on research up to June 2009.

Functional/somatoform neurological disorders are mental illnesses and adaptations that cause real physical symptoms, but without an addressable physical cause. The one I'm going to be talking about mostly is conversion, because I know it intimately, but a lot of what I've learned crosses over into others. This stuff is not however true of malingering (basically faking to avoid life) or more complicated psych disorders like Body Integrity Identity Disorder which are somewhat voluntary. Functional disorders are involuntary and disabling. They are real and important and life interrupting.

Normally when we describe diseases, we start off with a cause. Conversion disorder used to be thought of as caused by a number of things, and some of the older descriptions still reflect that: emotional stress turned physical, hysteria, shell shock, maladapted defense responses, etc. But in the end, none of that is provably true. So we are left with a disorder of an unknown cause that wreaks hell in the lives of the people it affects.

To reduce it down to it's simplest, the experience of conversion disorder is one of being incapable of feeling certain kinds of feelings as emotions in some cirumstances combined with having neurological symptoms crop up instead. Conversion disorder may still be overdiagnosed, but it is real. It is completely involuntary - a person paralyzed with conversion is just as paralyzed as someone with a spinal cord injury. Studies with PET scans have shown us amazing things. One featured a woman with a paralyzed arm. They watched as she initiated the thought to move her good arm, and the process worked fine. They told her to move the other one, and she did the same things, the signal to move it started, went out and then just stopped, long before it reached the spinal cord.

Before we go further, there are two kinds of conversion disorder I know of. One is short term, and it is the most common: a few hours of symptoms. It is not unlike having a sour stomach when your husband says he's divorcing you, just a little more severed, and passes on it's own usually. What I'm talking about here is the rarer chronic conversion disorder, which is a long term problem with steady symptoms. Conversion disorder experts have written a number of papers for ER docs as guides of how not to make conversion worse and avoid chronic cases, but in my experience it hasn't taken yet. Overall it is believed that excessive medical testing, especially painful or difficult testing, make it more likely the disorder with go chronic. They're mostly just guessing though, as the cause is somewhat of an unknown.

Now the big question is if the brain really doesn't send the signal for the arm to move, why is conversion a psychological illness? The simple answer is, they don't have a non-psychological treatment, and it affects emotions. The best prognosis for CD is to have it along with another mental illness. The drugs for your main mental illness have a good chance of curing or at least holding back the conversion disorder symptoms. Otherwise, some people have gone into remission after 4-10 years of psychotherapy. A few have remitted spontaneously. For most of us, though, it is a lifelong companion.

Unfortunately, functional illnesses in general have been tainted by our simply young, undeveloped grasp of neurology. Neurology is pretty opaque, and we comparatively have a hard time seeing what's going on compared to say internal medicine. So a fairly long list of organic diseases used to be diagnosed this way, with multiple sclerosis being the big name example. Before the MRI, we couldn't see it in life at all, and not a whole lot of autopsy studies were done on "hysterical" women. Thankfully, neurology has jackrabbited forward and at this point is a pretty competent field. We even have established clinical markers for things that are invisible until autopsy, like upper motor neuron dysfunction markers such as the Babinkski.

Now that we do, the diagnosis rate for functional illnesses on the whole and conversion in specific are much lower and more often correct. That is to say, if a neuro and a psych both examine you, take the time to do their thing, and talk to each other, if they agree, they reckon they have a 95% accuracy rate. That's pretty darn good.

The problem comes in, as is usually does, not from the science, but the people. Even doctors and nurses who know better don't tend to treat someone diagnosed with conversion disorder as their disability would require, rather treating them like they're making it happen. And just like a person with ALS can get cancer, people with conversion disorder can get other diseases, the symptoms of which go unstudied often. Worse yet, whereas medical insurance will pay for wheelchairs and the like for someone with organic disease, they usually will not for an equally disabled somatoform patient. Also, family and friends don't often "get" conversion disorder, and it is hardly an easy reason to explain why you can't walk! That all makes it pretty hard to accept you have it, so there wasn't a single CD support group last I checked.

There are some things you can do, though. If you are having a particularly bad time of any somatoform disorder, knowing too much about physical disease seems to predispose you to have symptoms that are closer to the real deal, and makes it harder to separate them from organic disease. Last I checked, they really weren't sure why, but it means that CD is much tougher to suss out in the over-educated west than in poorer regions.

For me, it took a lot of PLS progression and some genetic test to work out vaguely which symptoms came from PLS and which from CD. I won't claim that it's easy, and on a few even my neurologist isn't willing to hazard a guess. I have a good one, who is willing to treat they symptoms, I hope you can find one too. Once you have an idea, you can begin to observe a pattern to your life.

For instance, I don't worry about finances or moving. I plan, do my spreadsheets, etc, and even if we're completely underwater I am unflappable and have perfect equanimity. I face painful medical tests the same way, and seemingly inconqerable obstacles. This doesn't extend to everything: I cried, and cried hard, when my sight began to go, and I can't get anything done when I know my husband is angry at me. But for those first kinds of situations, there's not emotional content. Instead, my brain seems to be wired to make me twitch, and not just a little, but whole body myoclonic jerks. (Well, until my legs became mostly paralyzed, now just the upper body.) That's not all bad... if a housemate just disappeared and we can't pay rent, it is great to have someone who skips the reasonable emotional reactions and puts together a plan with figures. You'll have to take dictation, though, because I won't be actually writing down said plan when I'm consumed with jerking. ;)

Once you know how you are wired, some symptoms can effectively become emotional markers. Like AD in someone with a lack of sensation from a spinal cord, or pain in a normal person, it is a sign something is wrong and you should fix it as soon as possible. Trying to relax, especially being yelled at to relax, doesn't help. Ignoring it doesn't help. Unfortunately, for someone with steady symptoms, none of that helps - they symptoms don't get worse, don't tell you when something is wrong, and there is precious little you can do about them.

50% of people properly diagnosed with conversion disorder either have it comorbid with a neurological problem or develop one in a decade. That is hard numbers, though as Olly points out, may also represent an unaccounted for misdiagnosis rate. I don't write medical literature, just read it, so I'll leave that for the big wigs to work out in the long run. This means that it is really important to keep following up with your doctor as your life progresses, and not just write off any symptom you have. I have a 6 week rule. If a symptom lasts less than 6 weeks, it was either conversion or an exascerbation. At 6 weeks, I got to the appropriate medical professional. I'll go sooner if it seems life threatening or is on one of the "go the ER when" lists.

I have noticed anthropologically an interesting trend in ER treatment. In previous years, all problems, even my organic ones were noted as being related to conversion disorder. Ironically, that pendulum has swung completely the other way. Symptoms I KNOW are conversion, tell them are conversion, are noted as "secondary to UMND". The way the medical profession handles this thing just isn't very functional.

So that brings us to the sad thing... I can only write this for you because I have absolutely undeniable UMND, even if which one is an open question. I have the right genetic markers, radical strength loss, all the right bulbar test results. Up until that happened, I couldn't even admit to a new doctor that I have conversion disorder, because all the ones that knew failed to treat my other problems. I wasn't mistreated by doctors because they misdiagnosed my conversion disorder... it was because they attributed EVERYTHING to it, when it was probably caused by the stress and pain of working on a weakened body in the first place.

Thus, I can't really recommend you tell your doctor if you can avoid it. I wish I could. I would recommend going to a psychologist if you think you have any physical symptoms that stem from a functional illness, because they have a small chance of helping, and a big chance of telling your doctors what isn't somatoform when the time comes. And if they can help, having a better life is good, and even if they can't, they are certainly capable of making you feel better about the life you have. Your doctor probably won't push you to go or even write out a referral... but you don't need one. Don't wait for one, go!

And for everyone else, we as a culture need to change how we deal with somataform illness. Now the crip culture as a whole has begun integrating physically and mentally disabled folk in one banner, and that's good. I don't see that we should care why someone needs advice on a powerchair brand or a curb hopping techniqe. We need to make our subculture a place where it is ok to come out, but also stand up for those with mental afflictions in public. It isn't cool to pick on the guy in the wheelchair anymore, but it is cool to pick on the "crazy" guy. We aren't so different... they just have different neurons misfiring. My husband has major depression, but outside our intimate friends, he dosen't tell anyone. When they patronizingly pat him on the back for marrying a woman in a wheelchair, we don't mention that he's just as disabled. I just eat it and hold my tongue, because my disability is "respectable" and his isn't, and he's not ready to face that scorn. But I have friends with bipolar, various forms of depression, anxiety, disassociative fugues, etc, and they and I face very similar access challenges. So remember that when you vote or when you have a chance for access input.
 

LizT

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Becky- I thank you so much for this post. Im hoping it will open peoples eyes.
The very end of it touched me the most. As a person who struggles with Bipolar Disorder and is frequently in horrible lows, I know too well the stigma that follows us "crazies" around. The fact that I just said that I am Bipolar is huge for me. Im always so afraid to tell people because of what alot of folks thinks that means. Theres so much misinformation out there.
There have been so many times that ive been around people who are talking about the behavior or actions of someone, and then someone throw out "oh theyre bipolar". then i hear the collective "ahhh". Like that just explains it.
Im getting a little of track here- anyways, thank you so much again for posting this, Becky. It took alot of courage.
 

abbas child

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Liz, dear Liz... you have a head end and a foot end. You are bi-polar. And I am so shocked!:mrgreen:

Well, admittedly you'd already told me, but I hoped to lighten your day-before-the-birthday.

Now to read Beky's post, which I admittedly left until I could read your response. Beky is worth taking one's time reading since she always teaches me so much... or would if the brain could take it in.

Beky, thank you for this post. I know it will be instructive.
 

LizT

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Ann- you are the absolute BEST
 

abbas child

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I'm glad, actually, you aren't offended, Liz. When I reached the last paragraph of Beky's very good explanation, I realized that jesting about it must seem very callous. Beky--I have so much respect for your gifts and abilities. You're one smart cookie.

And the very real need to stop the judgment concerning the "mind" problems is more than apparent and justified. Picking on or scorning anyone with a problem is cruel. Beky, your ability to simply attend to a problem without becoming unhinged is such a blessing. I'd like to have that part of it! But I hear you in regard to all the difficulties posed by doctors who cannot cross barriers.

On an admittedly trivial note, I will add that during my freshman year of college I was unwell, the school doctor put me on Valium saying my problem was stress. I traveled home for Easter break, saw my Internist and was recovering from Mono. The school doctor never did any bloodwork, but as I was female... you know the story. That was one tough semester.

Thank you, Beky. I am in awe.
 

Alyoop

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Beky, that is simply brilliant, brilliant. Some doctors need to read it. It is difficult for a doctor to distinguish between a conversion disorder and malingering. That decision needs to be decided by the psychiatrists, once no neurological problem is found. My husbands collegue, had a patient come in, not able to move, who he later saw at a service station, filling his car, wheelchair sitting in the back! Very very hard to distinguish.

Aly
 

olly

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BRAVO BECKY!
that was such an informative and heartfelt post.

liz you have nothing to be ashamed of ,it is an illness that is out of your control...........it does not take away in the least what a wonderful person you are.

i have admitted before i suffered from manic depression and was due to mental trauma from childhood.
after one doctor at the neuro rehab mentioned psychological reasons could be at play i went to see my neuro and asked him straight out if he though it was the case,he was actually taken back by my question.
he said no and tried to convince me that if he thought there was nothing wrong he would not keep seeing me...........plus the fact that i had neurological signs showing umnd.
will just add that i did alot of soul searching and had serious talks with myself ( not the funny in the head ones)from seeing the women doctor to asking my neuro.
i did think about the possibility at least but it just did not add up.

i have heard of people being in wheelchairs but they can't find anything wrong,that must be soul destroying.
 
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rose

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Becky,

Thank you so much for taking the time to make this extremely informative post (as well as your others on the subject). It is something that I know very little about.

Just as others have pointed out, the stigma of having a "head" problem remains, despite the fact that many like to think of themselves as being enlightened, and beyond that. I remember the empathy I felt towards a woman who I didn't even know in the slightest, when I witnessed her reaction (in the way of her body language) when her neuro advised her to go back to her psychiatrist, that every possible avenue had been explored, and there was just nothing wrong with the function of her vocal cords. I thought how hard it must be for her.

Just as Aly pointed out, even the medical profession is not exempt from prejudice, even though they don't want to be, it has been the way society has though, even if in secret, for so many generations.


When Roderick began the thread that most likely inspired this thread, I was interested to see how many member's knee jerk reaction was to reassure him that he didn't need a shrink; the sentiment being that there was nothing wrong with his head. These were very heartfelt and kindly responses, and mentioning them here is just to exemplify how we don't (as a whole) even realize on a conscious level that if a person has a suggestion to seek counselling, that we interpret that to be a put down of sorts.

So Becky, by you opening up this dialog, it is bound to help so very many people. Even people we will never even know were here.

I cannot begin to fathom hard hard it must be to have two separate conditions that can exhibit similar signs.

Liz, my eldest son's best friend is bi-polar, and he is a doctor, but that does not make him immune to the conflict of feeling better on meds, stopping them, sinking into the abyss, and starting up again. A very hard cycle. My younger son has PTSD as a result of military service, again so complicated, and for me, heartbreaking.

The mind body connection is not recognized enough as for as its importance in our overall health. It amazes me that people generally accept that stress can be in important factor for stroke or heart attack, but beyond that, there seems to be an unwillingness to think outside of the box.
 

Tokahfang

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I was really blessed. During my college years, I had the opportunity to have a MD in his residency as a housemate. We became really, really good friends. He tried to help me best he could, but most importantly he gave me a good speech one day.

He said, "Tokah, you have a neurological illness. I'm a doctor, our friend Chris is an actor, we'd know if you were faking. I'm not sure medical science knows what that illness is or if we'll ever know what it is in your lifetime. But what happened when you graduated highschool was a disassociative fugue, not a stroke. You are covering up to yourself what inside you know is also mental health trouble. We are your friends, we'll love you either way, and you'll be much healthier when you come to grips with it and are honest about it."

It took me seven years to take his advice, and I never got to thank him, but it made a world of difference in my life.
 

arkallen

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Thanks Becky for all that insight. I hear these terms tossed around by the medical profession, and it's only in reading your thread that it occurs to me how strange it is that none of them ever explain in the very least. Nor, in my experience, do they suggest what you should do about it (other than in my most recent experience). I think that the medical environment is very tough on "inorganic" disease, it is patronising and dismissive. I have experienced downgrading of requests for equipment for example. One Neurologist wrote me a "snap out of it" letter (well written and kind in its tone), and I have a copy of another letter he wrote to my Neurologist in which he says he is waiting to see what effect his letter has on me.

Rose, your comment about the reassurance that people offer is so perceptive. And Olly, I can vouch that it is indeed soul destroying to be in a wheelchair when no one can find anything wrong with you! Ann suggested this Proverb to me: "A man's spirit sustains him in sickness, but a crushed spirit who can bear?"
 
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