Aa
What do you do when the neurologist says you have "converson disorder"?
I had my appointment with the neuro earlier this week and it has taken me until tonight to finally stop feeling upset and confused by this stunning response to the simple question I asked him "what is your diagnosis at this point?" and he responded that he thought I had conversion disorder. Zilla posted something last weekend about Conversion Disorder and although I didn't understand it much, it was an interesting topic. I went back over her postings after he gave me this "news". The next question I asked him is how he came to this diagnosis and he said that the timing of my illness and the imminent deployment of my husband to a war zone. I recall telling him this the night hat my husband was to leave in a few weeks the night I was admitted into the hospital and he was called in to do a consult on me. I assured him that it was not something I was overwhelmed about. In fact, my husband did a tour in Iraq last year and that was far worse than where he is now.
So, what do I do now? I did get on the web and looked up this disorder and although I understand a bit more why he might think this, I strongly disagree with him. I mean, it would be a far better diagnosis than MS or some other debilitating disease, but what the heck? He asked if I would be willing to get a psychiatric examination and I said "YES"!!! If this is indeed psychological, then I would be happy to get some help to get over it. That was when he told me that he wants me toe another neurologist to get a second opinion. He said that psychiatrists don't like CD diagnoses unless at least 2 neuros agree on that dx. Again, I just don't know what to think.
You guys are so insightful and been there and done this all before, so let me know what you think. I'm too upset to think of the right course of action. Thanks so very much.
Julie
So, what do I do now? I did get on the web and looked up this disorder and although I understand a bit more why he might think this, I strongly disagree with him. I mean, it would be a far better diagnosis than MS or some other debilitating disease, but what the heck? He asked if I would be willing to get a psychiatric examination and I said "YES"!!! If this is indeed psychological, then I would be happy to get some help to get over it. That was when he told me that he wants me toe another neurologist to get a second opinion. He said that psychiatrists don't like CD diagnoses unless at least 2 neuros agree on that dx. Again, I just don't know what to think.
You guys are so insightful and been there and done this all before, so let me know what you think. I'm too upset to think of the right course of action. Thanks so very much.
Julie
You all have been so incredibly helpful. You are so amazing and caring. Thanks so very, very much. Honestly, I don't know who I could have talked to about this and actually get responses from others who have been through it.
From all of your responses I have made a decision NOT to go to the neuros this doctor recommended for the 2nd opinion. I strongly believe he just wants someone to confirm his diagnosis. That was the impression I got immediately when I saw how irritated he was that I hadn't made the appointment with either of his choices. Last appointment when he first gave me these names, I asked if he could instead refer me to the MS and Transverse Myelitis clinic at Johns Hopkins in Baltimore. He was a little perturbed, but agreed. So, I might go up there still and see what they say.
So,I"ll get my own doctor for the second opinion.
My Dilemma now is whether to go see a psychologist or psychiatrist to either confirm or rule out conversion BEFORE or AFTER I get the 2nd opinion. What do you guys suggest? I love ya guys. Thanks so much.
Julie
From all of your responses I have made a decision NOT to go to the neuros this doctor recommended for the 2nd opinion. I strongly believe he just wants someone to confirm his diagnosis. That was the impression I got immediately when I saw how irritated he was that I hadn't made the appointment with either of his choices. Last appointment when he first gave me these names, I asked if he could instead refer me to the MS and Transverse Myelitis clinic at Johns Hopkins in Baltimore. He was a little perturbed, but agreed. So, I might go up there still and see what they say.
So,I"ll get my own doctor for the second opinion.
My Dilemma now is whether to go see a psychologist or psychiatrist to either confirm or rule out conversion BEFORE or AFTER I get the 2nd opinion. What do you guys suggest? I love ya guys. Thanks so much.
Julie
**Disclaimer: I didn't read all of the posts in detail, so sorry if this is already mentioned.
What gets me here is he is that I feel like he is sabotaging your 2nd opinion. He's not even framing it that you should seek a 2nd opinion who will start fresh. Instead it sounds like he wants the 2nd opinion to agree with him that it is conversion disorder. I'm not sure if I am wording this well, but it feels to me that he is already biasing the 2nd opinion toward agreeing with him.
Like, what is he really asking you to do? Go to a 2nd neuro, and when they ask why you are there, say "Well, my 1st neuro says I have conversion disorder but he is not confident enough to send me directly to a psychiatrist, so can you confirm?"
You should get a second opinion, I agree with what I saw above that you should not let neuro #1 pick neuro #2.
My 1st (and most evil!) neuro made me fee stupid and crazy. He wrote in my chart that my symptoms were stress related and told me not to come back if my symptoms progressed/recurred, and literally tried to shove samples of AD's at me. We've not spoken since ;-)
But the damage was done, since then, I feel so nervous now about doctors not believing me, it affects my attitude and how I present myself and discuss my problems at appointments. I just discussed this yesterday, and don't think I am going to even go to appts alone anymore.
So hopefully you are more of a tough cookie than me, and can get over this neuro! Good luck in moving on.
And one more thing, I have no idea if it's true that some psychiatrists want 2 opinions before they will evaluate conversion disorder, but I'd ask around. It really sounds like he is just not confident. If I were you, I'd look into seeing a psychiatrist before your 2nd opinion, not after. I like your attitude that you want answers, psychological or otherwise and I've felt the same way. But it really makes more sense to me to try and see a psychiatrist before, so you can bring the eval to your 2nd neuro appt. It seems backwards to me the way he wants you to proceed.
Good luck and thanks for sharing this situation with us so that we can all learn from your experience.
What gets me here is he is that I feel like he is sabotaging your 2nd opinion. He's not even framing it that you should seek a 2nd opinion who will start fresh. Instead it sounds like he wants the 2nd opinion to agree with him that it is conversion disorder. I'm not sure if I am wording this well, but it feels to me that he is already biasing the 2nd opinion toward agreeing with him.
Like, what is he really asking you to do? Go to a 2nd neuro, and when they ask why you are there, say "Well, my 1st neuro says I have conversion disorder but he is not confident enough to send me directly to a psychiatrist, so can you confirm?"
You should get a second opinion, I agree with what I saw above that you should not let neuro #1 pick neuro #2.
My 1st (and most evil!) neuro made me fee stupid and crazy. He wrote in my chart that my symptoms were stress related and told me not to come back if my symptoms progressed/recurred, and literally tried to shove samples of AD's at me. We've not spoken since ;-)
But the damage was done, since then, I feel so nervous now about doctors not believing me, it affects my attitude and how I present myself and discuss my problems at appointments. I just discussed this yesterday, and don't think I am going to even go to appts alone anymore.
So hopefully you are more of a tough cookie than me, and can get over this neuro! Good luck in moving on.
And one more thing, I have no idea if it's true that some psychiatrists want 2 opinions before they will evaluate conversion disorder, but I'd ask around. It really sounds like he is just not confident. If I were you, I'd look into seeing a psychiatrist before your 2nd opinion, not after. I like your attitude that you want answers, psychological or otherwise and I've felt the same way. But it really makes more sense to me to try and see a psychiatrist before, so you can bring the eval to your 2nd neuro appt. It seems backwards to me the way he wants you to proceed.
Good luck and thanks for sharing this situation with us so that we can all learn from your experience.
Oh boy...you are going through what many of us here have...I went to see three Neuro they all told me they don't know what it is..the White Matter Lesions could be anything...maybe I should see a psyciatric...which I did...I talked with her for a few hours
she said from what she could see it's not in my head...and something is obviously wrong..that is what she told the Drs...
now a year later...the latest MRI showed changes...I saw the same Neuro from two years ago and he said he was sorry about giving me a difficult time..he had me in tears a few visits back...I was so frustrated with him telling me to see a psyc...again...
but now he say it's not in my head and there is something wrong..and sending me to the MS clinic to see a MS specialist?? who know...I hope they can give me a final Dx?
I didn't like it when they said to see a psyc but I did and framed the letter...ehehehe
so, you are not alone with this one...and we all know how frustrating it is... hang in there
we are here for you, find your Own Neuro...and take all your reports, MRI etc...
take care
andi
she said from what she could see it's not in my head...and something is obviously wrong..that is what she told the Drs...
now a year later...the latest MRI showed changes...I saw the same Neuro from two years ago and he said he was sorry about giving me a difficult time..he had me in tears a few visits back...I was so frustrated with him telling me to see a psyc...again...
but now he say it's not in my head and there is something wrong..and sending me to the MS clinic to see a MS specialist?? who know...I hope they can give me a final Dx?
I didn't like it when they said to see a psyc but I did and framed the letter...ehehehe
so, you are not alone with this one...and we all know how frustrating it is... hang in there
we are here for you, find your Own Neuro...and take all your reports, MRI etc...
take care
andi
hi julie,
i cann completley understand your state you are feeling tonight.
My post is sent with my open heart.
IT was in '05 i felt the samae. I had many abnormal tests , signs, and sypmtoms through the years, even a brain biopsy said my trouble was organic. When four years into it all , my wonderful (and yes i still believe she is) neuro was at loss, and the mention of conversion cam eup. I was utterly dumbfounded, because i had actaully read on CD, but I looked at it she didn ot want to leave any stone unturned.
My evaluation with psych was actucally my idea , my neuro did dnot know i had scheduled an appt until after i had my first aapt. and she had a consult with they psychiatrist , and inlightening to both of them.
What if it was CD , and that was the type of treatment i needed and wa not recieving because she or I, or any doctor along the way was afraid of approaching that concept?
I am sorry i do not keep hisoties of posts clear, have you had abnormal tests of sorts?
Conversion Disorder would not have any posivite 'black and white' tests i.e. mri, blood, biopsy, reflexes etc.
Tonight, try to recompose ,ok?
Without knowing all your history, on your doctors behalf , when they keep turning up dead ends, a next logical view will be one of mental illness. A good doctorshould make thought of each of your systems along the way.
And that is not nessacarlly a bad thing, really, if you take time and put yourself in theirr seat, that tests and tests are neg. , the poossiblity of mental illness is there. Whether that is the finall answer, takes weeding through.
I am glad you will be evauluated by a psychiatrist. They areee specialists, and will be able to more clearly evaluate you and give their evalutaion to your neuro.
Our society unfortunaltly has not kept up with letting go of the label and sigma attached to that mental illness.
It is REAL It can be completlty debilatating
It can ruin a persons life.
I belonged to a small group (yes small because CD is VERY rare) and listening to their stories was heart wrenching.. It is as disabling to them as ms is to this to this group.
CD cann cause any number of symtoms of an orrganic disease, blindness, seizure(type), paralisis, incontenience,just to name a few.
PLEASE realize i am not saying you have something over another.
Just look at it as one step closer on your path to the correct diagnosis.
listen to your gut and your soul. I know that is not easy at times when they are to be the expert and self doubt can put a cloud over the issuesshouldn't THEY know??
My mond at times would start spinning out of control... i mus t be menatlly ill, then I would hold tight to my spirit and listen to myself.
I just wanted the right answer.
UNforutantely these illneses can take so very long to dx's. And the correct dx's is the importnt key.
Take care tonight JUlie,
amo
i cann completley understand your state you are feeling tonight.
My post is sent with my open heart.
IT was in '05 i felt the samae. I had many abnormal tests , signs, and sypmtoms through the years, even a brain biopsy said my trouble was organic. When four years into it all , my wonderful (and yes i still believe she is) neuro was at loss, and the mention of conversion cam eup. I was utterly dumbfounded, because i had actaully read on CD, but I looked at it she didn ot want to leave any stone unturned.
My evaluation with psych was actucally my idea , my neuro did dnot know i had scheduled an appt until after i had my first aapt. and she had a consult with they psychiatrist , and inlightening to both of them.
What if it was CD , and that was the type of treatment i needed and wa not recieving because she or I, or any doctor along the way was afraid of approaching that concept?
I am sorry i do not keep hisoties of posts clear, have you had abnormal tests of sorts?
Conversion Disorder would not have any posivite 'black and white' tests i.e. mri, blood, biopsy, reflexes etc.
Tonight, try to recompose ,ok?
Without knowing all your history, on your doctors behalf , when they keep turning up dead ends, a next logical view will be one of mental illness. A good doctorshould make thought of each of your systems along the way.
And that is not nessacarlly a bad thing, really, if you take time and put yourself in theirr seat, that tests and tests are neg. , the poossiblity of mental illness is there. Whether that is the finall answer, takes weeding through.
I am glad you will be evauluated by a psychiatrist. They areee specialists, and will be able to more clearly evaluate you and give their evalutaion to your neuro.
Our society unfortunaltly has not kept up with letting go of the label and sigma attached to that mental illness.
It is REAL It can be completlty debilatating
It can ruin a persons life.
I belonged to a small group (yes small because CD is VERY rare) and listening to their stories was heart wrenching.. It is as disabling to them as ms is to this to this group.
CD cann cause any number of symtoms of an orrganic disease, blindness, seizure(type), paralisis, incontenience,just to name a few.
PLEASE realize i am not saying you have something over another.
Just look at it as one step closer on your path to the correct diagnosis.
listen to your gut and your soul. I know that is not easy at times when they are to be the expert and self doubt can put a cloud over the issuesshouldn't THEY know??
My mond at times would start spinning out of control... i mus t be menatlly ill, then I would hold tight to my spirit and listen to myself.
I just wanted the right answer.
UNforutantely these illneses can take so very long to dx's. And the correct dx's is the importnt key.
Take care tonight JUlie,
amo
First I must say I totally agree with Deb and this neuro must be roasted very soon and you get the first spear!!!!!
Next, take this opportunity to get a qualified 2nd opinion from a MS specialist not just another neuro who may end up just agreeing with this nimrod.
Last, my first neuro put me on an antidepressants and when my sx continued he ordered another. The 2nd one I saw told me I was "severly depressed" because I cried in his office over the frustration of being told there is nothing wrong with me. They are just lazy SOB's that want to have their work spelled out for them and refuse to do the extra mental work to figure out these difficult cases. They are all the C students that should not have passed the boards!!!
Please take care of you and know that we are here to support your fight for a dx.!!
Hugs!
Kristin
Next, take this opportunity to get a qualified 2nd opinion from a MS specialist not just another neuro who may end up just agreeing with this nimrod.
Last, my first neuro put me on an antidepressants and when my sx continued he ordered another. The 2nd one I saw told me I was "severly depressed" because I cried in his office over the frustration of being told there is nothing wrong with me. They are just lazy SOB's that want to have their work spelled out for them and refuse to do the extra mental work to figure out these difficult cases. They are all the C students that should not have passed the boards!!!
Please take care of you and know that we are here to support your fight for a dx.!!
Hugs!
Kristin
My kids knew how upset I was after the appointment and I finally sat down with them before posting this question to the forum and told them what the neuro had to say. I was obviously upset and a little bit teary when I explained what the doctor suggested and what conversion disorder meant. They are older, age 21 and 23 not little kids. The first thing out of my son's mouth was "no way, mom. He doesn't know what he's talking about!" It is very nice to have family that love and support you, but what if the doctor was right? NO one has ever told me that I have psychological issues before and so this was quite a shock. I know you guys are right that I should go get that 2nd opinion from someone of my choosing and not his. He was pretty adamant about my going to his neuro buddies though. He even gave me a referral to his psych buddy at his former university hospital, where he just graduated in neurology 2 years ago. He didn't have a problem telling me that he wanted me to go to these guys because "he knows them"! Do I look like I just fell off the turnip truck?
OK, I'm starting to get angry and when I get angry watch out. I get into Julie-mode as my friends call it, and only good things will come out of it. Thanks so much for your help and suggestions. I appreciate it more than you know.
Julie
OK, I'm starting to get angry and when I get angry watch out. I get into Julie-mode as my friends call it, and only good things will come out of it. Thanks so much for your help and suggestions. I appreciate it more than you know.
Julie
I am going to have to put this bluntly--your neuro doesn't know what the heck he's doing and quite frankly, he's plain lazy. This is a cop-out diagnosis because he doesn't want to mess with your insurance company or something.
You've got lesions in your brain--plenty of evidence of something amiss. YOU ARE NOT CRAZY! Don't give in to a psychiatric evaluation and run like heck to a neuro that actually wants to do his/her job. Your wasting your valuable time and money on a psychiatrist and this neuro when you obviously have some serious problems.
I got a referral to a psychiatrist once from an incompentent doctor and I know it's incredibly frustrating. I think that this incident really did scar me deeply and it took a really long time to try to pursue getting answers and establishing trust with doctors again. As the result, it delayed my diagnosis and treatment.
I do think that there are words that one of our beloved friends on the forum uses to describe their neuro that will fit nicely here--"EVIL NEURO". I can't think of anything that would describe this person better who out of plain laziness dumps some bogus "diagnosis" on you and and actually hurts their patient.
This really hit a nerve with me. Please don't let this discourage you too much.
Deb
You've got lesions in your brain--plenty of evidence of something amiss. YOU ARE NOT CRAZY! Don't give in to a psychiatric evaluation and run like heck to a neuro that actually wants to do his/her job. Your wasting your valuable time and money on a psychiatrist and this neuro when you obviously have some serious problems.
I got a referral to a psychiatrist once from an incompentent doctor and I know it's incredibly frustrating. I think that this incident really did scar me deeply and it took a really long time to try to pursue getting answers and establishing trust with doctors again. As the result, it delayed my diagnosis and treatment.
I do think that there are words that one of our beloved friends on the forum uses to describe their neuro that will fit nicely here--"EVIL NEURO". I can't think of anything that would describe this person better who out of plain laziness dumps some bogus "diagnosis" on you and and actually hurts their patient.
This really hit a nerve with me. Please don't let this discourage you too much.
Deb
Conversion disorder is certainly overused as a diagnosis. Even after I was diagnosed with MS, my neuro wrote off my cognitive problems as being 'confused and overwhelmed.'
So definitely seek out another opinion. Also consult with a psychiatrist. Your neurologist ISN'T QUALIFIED to diagnose you with conversion disorder, and the consult with the psychiatrist will definitely eliminate that as a possibility. Then you can get on with finding out what's really wrong with you.
It's telling that he said you should get a second opinion after you told him you were willing to get a psychiatric evaluation. Guess he decided you weren't faking it after all, but he didn't want to look like a fool. Too late!
So definitely seek out another opinion. Also consult with a psychiatrist. Your neurologist ISN'T QUALIFIED to diagnose you with conversion disorder, and the consult with the psychiatrist will definitely eliminate that as a possibility. Then you can get on with finding out what's really wrong with you.
It's telling that he said you should get a second opinion after you told him you were willing to get a psychiatric evaluation. Guess he decided you weren't faking it after all, but he didn't want to look like a fool. Too late!
Oh my gosh - please tell me you will find your OWN neuro to see, and not one he recommends. Obviously, he will agree with original doc...If he TRULY believes you suffer from this condition, he should be completely comfortable in you seein ANY neuro, right? If he's that confident, he should have no worries on who sees you.
Also, take a look at what they say about conversion disorder on Wikipedia ... They all but say all origianl theories have been either disproven, or unable to be proven, and that - like most of Freud's studies - to be unreliable at best.
There are some more modern theories about it, but it still requires THREE elements in order for an official Dx...its a very interesting article, and its NOT an easy diagnosis to make!!
Another little FYI - Conversion disorder was originally called "hysteria" and was , of course, mainly women who were diagnosed with it. Well, of course!! We are ALL hysterical, right??? lol...he needs to go back to school and come up with something a little more forward thinking, no? Another bum....I think (IMO) you should get another neuro all together...good luck
Lauri
Also, take a look at what they say about conversion disorder on Wikipedia ... They all but say all origianl theories have been either disproven, or unable to be proven, and that - like most of Freud's studies - to be unreliable at best.
There are some more modern theories about it, but it still requires THREE elements in order for an official Dx...its a very interesting article, and its NOT an easy diagnosis to make!!
Another little FYI - Conversion disorder was originally called "hysteria" and was , of course, mainly women who were diagnosed with it. Well, of course!! We are ALL hysterical, right??? lol...he needs to go back to school and come up with something a little more forward thinking, no? Another bum....I think (IMO) you should get another neuro all together...good luck
Lauri
Oh my God, another crappy neuro, I'm with sunny on this one. I can't say I've heard of what he has diagnosed you with but I will now research it and learn.
No doubt at some point I will probably be told the same thing. So far he has blamed my symptoms on the following:
Old age, ( I'm 50 )
High blood pressure ( my specialist burst out laughing )
Oh, and of course, depression
My MRI showed multiple lesions in my brain.
Sunny is so right, if you can, go get as many opinions as it takes.
Geez these so called specialists make me mad!
All the best to you
TB
No doubt at some point I will probably be told the same thing. So far he has blamed my symptoms on the following:
Old age, ( I'm 50 )
High blood pressure ( my specialist burst out laughing )
Oh, and of course, depression
My MRI showed multiple lesions in my brain.
Sunny is so right, if you can, go get as many opinions as it takes.
Geez these so called specialists make me mad!
All the best to you
TB
This REALLY ticks me off! ARGH!!!! I can totally understand why you'd be frustrated, I'd be livid!!
Ok, so you just go right ahead, and get that second opinion, and third if you need it.
Then, make sure you are nicely rested, and go for that psych consultation. So far, the members here say it's well worth it to be told it's not in your head and that you do have true MS symptoms.
Hang in there, and I'm sure other members will be chiming in soon!!!! I've heard that this is what neurologists say when they really can't figure out what is truly wrong with you.... I've been there, done that and have the bag of samples of anti-depressants to prove it.
((((hugs)))))
~Sunnytoday~
Ok, so you just go right ahead, and get that second opinion, and third if you need it.
Then, make sure you are nicely rested, and go for that psych consultation. So far, the members here say it's well worth it to be told it's not in your head and that you do have true MS symptoms.
Hang in there, and I'm sure other members will be chiming in soon!!!! I've heard that this is what neurologists say when they really can't figure out what is truly wrong with you.... I've been there, done that and have the bag of samples of anti-depressants to prove it.
((((hugs)))))
~Sunnytoday~
Have an Answer?
You are reading content posted in the Multiple Sclerosis Community
Top Neurology Answerers
Australia
ON
Queensland, Australia
Queen Creek, AZ
Find out how beta-blocker eye drops show promising results for acute migraine relief.
In this special Missouri Medicine report, doctors examine advances in diagnosis and treatment of this devastating and costly neurodegenerative disease.
Here are 12 simple – and fun! – ways to boost your brainpower.
Discover some of the causes of dizziness and how to treat it.
Discover the common causes of headaches and how to treat headache pain.
Two of the largest studies on Alzheimer’s have yielded new clues about the disease
