Has anyone been told they have conversion disorder?

[kerrtelli]

New neuro today said he thinks my issues may be related to depression.

A forum member mentioned conversion disorder.

I am interested in knowing if anyone else was told their symptoms wee psycho somatic and if so, did they finally get diagnosed and how long it .

Thanks.  

[JackieMars]

I have conversion disorder, and I have 1 lesion in my upper spine, I have had ever neurological test under the sun for the last 23 years and no organic disease has ever been found. Conversion disorder is a perplexing disorder, with much to uncover, learn, and understand. I know lesions are "supposedly," uncommon, but again so much is unknown about this disorder. My conversion disorder is extreme and I believe it to have caused my lesion, among a few other things.

[kwarendorf]

Hi PM Welcome to the forum.

This thread is a bit old. It was last updated over 2 years ago. I don't think kertelli visits any more.

We're a pretty friendly group. Why not Post a Question and tell us a little bit about your situation.

Kyle

[Peggymousa]

Hi Im new to this site and was wondering if you managed to get a proper diagnosis? My neuro has said Ive got Conversion Disorder which has made me so angry even though I had a positive blood test for Myasthenia. He said it was a false positive. Been ill six months with no help at all

[zoefromsussex]

Just been reading all these comments and I can't believe how much of the run-around lots of doctor's give people! It just makes me so mad!

[supermum_ms]

This is an out dated thread/post but i'd like to make mention again that CD is a very rare disorder but one that is still being thrown about like confetti by neurologists, shame on those that do!

Just to make the point, kerrtelli is now dx with MS and is now taking disease modifying medications as is appropriate for someone with MS and not CD!

CD is a life long disorder and there is no cure, management and drug treatment programs can help but they do not cure, so if hypnotherapy worked then the dx of CD is highly questionable. The more likely dx probably should relate to the realms of anxiety disorders, once the anxiety has been addressed/treated even by hypnotherapy, then the condition can be more controlled and or potencially cured.

True mental health disorders are not cureable, they can lay dormant but highly stressful situations, change in meds, no meds etc can bring it all back again. No reputable dr would ever claim a particular treatment will cure CD or any other mental health disorder, be warry of those that make such claims!.

cheers..........JJ

[Sumanadevii]

Scot, I think hypnotherapy is very much like meditation.  The only difference is you have help getting to that "place".  And,  yes, I find it very helpful for pain relief.

[scottiek]

For those who were diagnosed with conversion disorder or thought to have conversion disorder have any of you tried hypnotherapy? Im wondering what the results were.

In July 2009 I was stomped in a soccer game and thought to have had a broken Hyoid bone. 13 doctors and specialists later I finally got diagnosed with a conversion disorder from the Chief of Head and neck sugery at UCLA medical center.(dr Berke) He advised hypnotherapy and the  treatment worked. Im trying to keep this short and sweet. If anyone has any questions feel free to contact me. I hope this treatment will help some if not all of you. If your symptoms were as bad as mine this will feel like a miracle for you and all the loved ones effected with your symptoms.

[tammyalonzo33]

I was told I had a conversion disorder last year by a (very mean neurologist, who only really wanted to talk about how unpleasant I looked to him, due to being overweight.) I had several lesions, including Dawson's fingers in my CC.  He said other things too, but some of them were too vile to relate.

However, after another flair- and a new neurologist- I was diagnosed on July 29, 2011- just a few weeks ago.  

I was very upset by what the first neuro said to me- but I researched everything, just in case.  I figured that I couldn't let my feelings stop me from getting to the proper diagnosis.  I wanted to know the truth, and if that meant psychogenic illness- I wanted to know about that too.  But seriously, Don't give up!  Eventually, the truth will come out.  If you have MS at some point the evidence will be incontrovertible. But I completely agree with everyone here-- Get a new neurologist right away. They don't admit to being wrong easily. If he already has a prejudice against you, I don't believe he will have an open mind in the future.

Good luck with it all, and just hang in there.
Tammy

[iambus]

yeah, if you have lesions on your brain then something is definitely going on! and I'm pretty sure depression doesn't cause lesions! lol I would say go to as many drs as you need to, to find out what's going on.  

When we have to go to countless drs, it doesn't mean we're silly, crazy, etc. It shows how bad the state of our health care system is in and shows how many bad drs there are out there :/ I'm not a dr so I can't say if diagnosing people, and being a dr is hard work but as a patient, it seems really sad at how terrible so many drs seem to be at their job :/

Keep at it! Good luck :)

[kerrtelli]

You are xactky right.  I feel silly going from doctor to doctor.
At first, I started thinking, well maybe he is right.
Luckily, I have already had a bunch of MRI's and I have more than 21 lesions on my brain.
That is what is forcing the neuro to I've me the time of day.

Either way I have an appt with him next week.
He is reviewing my MRI to look at the lesions so I will see what he has to say.

I will not accept the depression crap.
If it was depression, that would be much better than ms.
It's not that.

I hope you re doing well and I appreciate your support.

Kerri

[iambus]

I agree with what others are saying about lazy neuros!  Only a couple of people have commented so far but there have been older posts with TONS of people here who have been told the same thing, only later to be diagnosed with MS or something else! (so sad that this is a far too common thing :/)

I had a GP tell me my symptoms were all caused by depression and then a neuro who said none of my symptoms where neurological (tingling and numbness in limbs, weakness in legs and arms, dropping things, tripping, etc) and that all of the sxs were from depression.  While I don't  have MS (well haven't been dx'd, ortho still thinks I may have it) I have been diagnosed with Cervical Spinal Stenosis and have herniated discs pressing on my spinal cord which is causing a lot of neurological symptoms.  Because of those lazy drs saying my symptoms were from depression and refusing to do an MRI a year ago, most likely I have perminant damage and won't go away, where as, if they had caught it a year ago I could have had surgery and perhaps the sxs wouldn't be perminant.

You know your body better than the drs.  If you feel like your symptoms aren't caused by depression, then most likely they aren't.  Definitely get another opinion! I felt silly going from dr to dr to dr (almost started believing the drs and started to feel crazy) but I KNEW for a fact my symptoms weren't from depression and I was right.  Keep searching for a dr that will listen to you and help you find out what is going on!  :)

[Sarahsmom46]

Stay strong and put that depression or possible CD behind you and close the door.  Something's wrong - Period!

I just wanted to add a word or two to what everyone else has been contributing on your post.  My brother-in-law was a practicing psychiatrist for over 35 years.  When he heard that my first youne enexperiened neuro thought I had CD, he was furious.  He even wanted to call and have a talk with him.  My BIL told me that he had only seen 4-5 patients in all of his career who had bonafide CD.  He said that he probably had hundreds who were referred to him for consultaion of possible CD and they all went on to be diagnosed with medical conditions that were the cause of their symptoms.  

So, maybe you can have depression but what came first?  The medical condition that has been disabling for you that caused the depression or the depression?   My bet it is the chronic medical issues.

Hang in there, be persistent, and listen to your body.  Stay on the path and keep moving forward.

Julie

[kerrtelli]

I am so sorry to hear about your dad.  That is very sad.

I hope you are dealing okay.  Welcome to the forum.
I love it here and find it extremely helpful.

I am already past the depression crap.

Thanks for your post.  Every word of encouragement means a lot.

Kerri

[busymom2003]

New on here, in limboland and trying to navigate this forum. I will say though...that is ridiculous. My dad was told he had a conversion disorder when no hard evidence was showing up...he died last year at just turned 49 from early onset alzheimer's disease.

[LisaJF]

No I have not been told that I have a conversion disorder (yet).  That is one of the first questions I asked my MS Specialist after our "first meeting".  Could this be psychogenic or CD? He told me no.  I responded, "I would rather have it be a conversion disorder because that is an ideal diagnosis rather than MS or Huntington's chorea.  Frankly, I'm scared of what I have because it is "unknown" right now and it appears I'm getting progressively worse in the ambulation and involuntary movements (especially during stressful situations or heat).

I'm so sorry for what you're going through.  Most of us here can relate to the frustration(s) that arise during our doctor's visits when we are anticipating a sound medical diagnosis over what seems an excruciating period length of time, needing their guidance and expertise to help us be proactive in our care.  We want to take the route of also taking prophylactic pharmacological regimens that could slow down or inhibit or reduce our symptomatic courses.

To walk out of your specialist's office with the feeling that there is something wrong with your mind is almost insulting.  However, depression and MS do go hand in hand.

I do not know what I have (yet), but I can tell you when your life is taken away from you in a physical sense, it will take its toll o you intellectually and emotionally --- eventually.  I know if and when I feel that I'm on that path for one second, I will not hesitate to take any antidepressant offered.

Don't get me wrong, I'm not saying you are depressed but the journey most of us take through this diagnosis process with our physical and cognitive limitations, pain and suffering -- there's bound to be some psychological effect.  It could be due to feeling that we are not being listened to, that we know our bodies and know when something isn't right and are counting on these medical professionals to know it when they see it and you come out of your office visit feeling bereft, ignored, pushed aside, labelled, etc.

Obviously this Neuro is not right for you.  Onto the next.  There's nothing wrong with that.  Many here have gone through multiple neuros until they were satisfied with their competency (even if it is MS or not).  This Neuro you saw isn't it.

You can't allow them to sway your path on finding out what is wrong or getting a diagnosis.  There is something wrong.  Unfortunately, YOU are the one who has to keep the ball rolling even when you are feeling like you've been kicked down.  Pick yourself back up and forget about what transpired on that last visit. It is insignificant as you know it is at this time.  

I'm sorry I can't be of any more support at this time. I wish I could be so.

I'll be flying to Florida this afternoon. My family member who had a Myasthenia Gravis crisis went from becoming short of breath, difficulty swallowing and double vision to CPAP machine to hospice in a matter of days.  She's now in a coma.  I have to go and say my goodbyes.

I will be thinking of you and praying that you will shake this awful experience off and continue onward.

As Bob said, there is a reason why you have all those lesions and that they must explain as well as your symptoms.  

Love and hugs to you my dear sweet friend.

Lisa

[supermum_ms]

Oh brother, are you p!$$ed off yet, or are you still in the doubting your sanity fase?

Personally i haven't had those exact words used but i do know enough about mental health to know thats what was being implied. The first neuro that didnt even bother to look or achnowledge i had lessions on my MRI, told me the cognitive issues i was having was probably senile dementia (id just turned 45) and the way i was walking was probably psychological. He also started talking to me in a loud voice, inches from my face like i really was old and senile ROFL!

I was stunned, i'm sure he heard me laughing as i left, simply obsurd idea with no basis what so ever but still it was made and i had to know!!! With in a week i was getting my head space examined. I had lots of tests looking for depression and or anxiety disorders, hour long discussions and it was me that brought up the possibility of 'it' being CD. Nothing wrong with my mental health lol i actually knew that before but still 'I' needed that piece of paper proving it wasn't psychological. i love that piece of paper :-)

Psych was facinated with CD and did a lot of research and discussed it with her mentor, approx 30% dx with CD are misdiagnosed, a physiological condition is eventually dx and their 'true' condition is thus appropriately treated. It is quite rare amungst all the mental health conditions, CD patients usually have history of a mental health issue, most common being health anxiety. Basically with HA, a sniffle has to be neumonia, a pimple has to be skin cancer, panic attachs has to be a heart condition etc and despite all evidence to the contrary they are convinced and no evidence will apeases them, they keep going with what ever idealisation of doom they have until its replaced by something else. They often know they blow little issues into something bigger, they are fearful never the less, they are anxious.

CD is similar but still different, if someone with CD is having what look like epileptic fits for example, just like epilepsy they have no control over the fit but the difference is that the CD fit will be absent of the physiological components, eg no brain wave activity, so it looks like a true condition but isn't. One of the most common psychological markers dr's look at is tremor in their patient, it may look like a genuine neurological tremor but a tremor that stops when their patient is distracted indicates that its psychologically based because a 'true' tremor continues dispite what the patient is doing. Make any sense?

I actually had neuro no 2 do that, funny but it didn't matter what distraction he had me doing those silly little legs of mine still did their thing, unilateral clonus is clonus you silly twit lol So what do you do now that 'mental health' is hanging over your head, you do the only thing you can do, you get it investigated just like any other medical condition. Depression isn't CD, health anxiety isn't CD and to have either doesn't automatically add up to CD and also having either doesn't make you immune from having any other medical condition, even a neurological ones like MS!

Oh just a heads up on lesions, in the mental health research there is evidence that lesions in the frontal lobes or in other words the personality areas of the brain are now being associated with mental health conditions eg bipolar. Lesions are like realestate, its all about location.

So after all that, do whats in your best interest and get this idea fully investigated, i promise you it will be good for you to do and once you get that piece of paper you will know for sure, no doubts!

Cheers.......JJ    

[tingletingle]

I don't know whether to laugh or cry. A group lynching is so tempting. Maybe we should all, from different parts of the world, post a letter to this neuro with Bob's cut and paste on exactly what 'conversion disorder' is and then include a bit on the Mcdonald criteria for MS just for good measure.

Kerrtelli, you have my heartfelt sympathies.

Blessings
Alex

[drsdonthelp]

And if anyone wonders why my name is drs dont help!!!!!!

They are lazy, and they don't have the time to put 2 and 2 together. It seems to be easier for them to make some money during their 10 min. exam, write out a script and send you home making you think  you are crazy.

Sorry to hear that you are getting the run around.  I too would get a different doc!!!

Pam:)

[Lulu54]

K -  You think you've heard it all about laazy neuros until something like your case pops up.  

have you read our health page on conversion disorder?   It explains the roots of this dx, and all the bunk associated with it.

http://www.medhelp.org/health_pages/Multiple-Sclerosis/So-they-think-youve-got-conversion-disorder/show/1137?cid=36

Silkcut did an excellent job of putting this together and it is well worth the read.

Lulu

[kerrtelli]

Doctor said depression.

[kerrtelli]

Thanks guys.  

[Sidesteps]

Here come the MS passe'.... :)

Kerri, your situation certainly gets the group riled up.  We.just.don't.get.it.

[COBOB]

My opinion is that 21 lesions is more that just a few and deserves and explanation.  Since you have a defect in the normal pathophysiology, I would thing you;d fall outside the criteria for conversion disorder.  I think your neurologist needs to find a cause for the lesions. Depression didn't cause the lesions, but there is a damn good case to be made that the lesions (and lack of medical answers) could be causing the depression.

Bob (not a doctor, but no shortage of opinions)

[jensequitur]

21 lesions does not equal conversion disorder.  Get away from this new neuro immediately.