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1263071 tn?1270297845

Conversion Disorder

I have had textbook symptoms of MS since 2008.  I have had good periods and bad periods.  I have expereineced a tingling or numbness to unable to walk. My vision is currently horrible, as I am experiencing optic neuritus.  I apologize for any mispellings. I am so disheartened right now to the point of just wanting to stop going to doctors and just deal with my symptoms as they come.  My MRI is clean and I keep hearing you might want ot consider conversion disorder over and over again.  I am discouraged though because I have been to a psychiatrist that ruled that out.  So I have half drs saying MS and half saying conversion disorder.  Has anyone every experienced this and do you ever feel like you leave your dr office like you have just had the wind out of you? How long have some of you had to wait for your diagnosis? Did people say you were nuts?   Did you begin to believe them???  Thanks.
15 Responses
233622 tn?1279338505
ME!!!!

Just today I got my spinal tap results back and got a firm dx of MS.  I also had Optic neuritus also.  Clinical symptoms but not enough lesions to support a firm dx.

Got it today though.  Ask for a spinal tap, you might get and answer.

LA  MX dx feb 2008
560501 tn?1383616340

   Sorry for the troubles you are going through. While I have never been told I have Conversion Disorder.......I do know about doctors not wanted to commit and just make a darn dx or at least start to treat sx.  Are you on any meds now?

    I would find a NEW Neuro....Take all paperwork w/ you INCLUDING the ones from the
psychiatrist stating that this is not what you have. ANd...don't forget the paperwork from all the other goofs that you said are saying MS.  A fresh slate is what you need!

    As for your question....It takes some floks years to get a firm dx while some get a dx on accident. It varies from person to person and escpecially Doctor to Doctor!
There is a Criteria that they are supposed to go by when dx. you can find that in the left hand corner at the top under the Health Pages.  Maybe you should copy and take w/  you to your next dr visit.

     HAve any Clinical SIGNS been seen by any of your doctors?  I hoipe you get some answers soon.
Have a good weekend,
~Tonya
405614 tn?1329147714
Well, I was told I needed no further need for neurological workup despite lots of neurological symptoms and a brain MRI with lots of (non-specific) lesions.  Then that neuro's chartnotes suggested somatization; she thought I was reporting symptoms that were caused by depression or anxiety, neither of which I was experiencing.

It took me almost 2 years to get diagnosed from the time of that first brain MRI full of lesions after an episode of acute-onset tremors.  I finally got diagnosed on my first appointment with my 4th neurologist (who was my second MS specialist).

Funny thing is that after I was diagnosed and injecting myself with Avonex I started wondering if it was all a mistake, if I didn't really have MS!  I had some doubts before, but they just made me more determined to find a doctor that would look at the facts and evidence and come to an educated answer that wasn't colored by their preconceived notions.  

My first MS specialist had me diagnosed with small vessel ischemic disease before she ever saw me, and 9 months of visits and an impressive 3T MRI of my brain didn't change that opinion.  That same MRI was key in getting my diagnosis, as was my history, symptoms, and exam.

Believe in yourself.

Kathy
559187 tn?1330786456
I agree with Kathy's last comment...Believe in yourself.  No one knows what you are going through better than you.  And, no one cares about you more than you do.  So don't be deterred.

True Conversion Disorder is very rare.  My BIL is retired psychiatrist and when my husband told him that the neuro thought I had CD, first question he asked me was what that doctor was basing his opinion on.  In his own practice of more than 35 years, he only saw 4-5 patients who had bonafide CD.  He said he could not even count how many patients who were referred to him for possible CD, but they were cleared.  Many went on to have actual illnesses was his final point.  

I was dx with MS a year ago and looking back on my journey to this dx I have often thought that CD would have been a preferred dx to MS.  But, had I bought into that dx then I would have quit trying to find out what was wrong and losing faith in doctors.  Fortunately, I went for a second and third opinion, the second was to a doctor the nutty neuro suggested I see. He ended up being the one who dx'ed me.  

So, you just never know how this journey will go but the important thing to remember is to stay on the path.  If you get deterred or slow moving forward, then you won't end up getting the answers you so deperately need.  

Take good care and know we have all been in your shoes.

Julie
1137779 tn?1281546105
Hi Breb

I'm so sad to read that half your doctors have been so unhelpful. Very unfortunately for many of us with neuro symptoms and signs, yours is a common experience. I can't count the times I've had the stuffing knocked out of me by a stupid doctor and, yes, I certainly weighed and considered the possibility that they might just be right. I think we all do at times.

But the science is on our side. Not theirs. Do you know that most doctors can't explain how 'conversion disorder' actually works? Did you know it was basically made up by a Victorian doctor who was off his head on cocaine a lot of the time? Do you know how much this 'diagnosis' saves the healthcare industry...?

Listen. Listen to your body. Trust your body. It is telling you that something is physically wrong. I have no idea what your signs and symptoms are, but generally speaking do any of us know for sure that our MRIs are 'clean'? Do we study them to check? For sure, MRI interpretation is an art as well as a science. Many people have found that even top professionals have misinterpreted clear signs of all sorts of diseases. MRIs can also come up clean for any number of reasons when they shouldn't, especially for subtle signs of disease like MS.

As Julie has said, true conversion disorder is extremely rare - if it exists at all, that is ;-) Please do keep on believing in yourself and trusting your own instincts - and do keep on looking for a doctor who can see past daft CD notions to the problems you are struggling with. You'll find her/him sooner rather than later!

hugs
sammxx

987762 tn?1331031553
COMMUNITY LEADER
I also agree with Kathy "believe in your self!"

I think you could say i've been and am in the same boat, welcome to limbo land :-) it takes a bit of getting use to but at least the whine is good and the chocolate cake is even better!

My journey of decline started 7 years ago, i was told i probably had hypoglycemia though no blood test has ever confirmed the dx, funny but eating more and more and more, never made 1 iota of difference, oh i did loose weight. Since then i have these episodes that i had affectionatly named 'loosing my legs' lots of 'probablies' dx with out any logical explanation for why a happy, calm natured though active, fit women was periodically loosing control of her body. I am still trying to regain my self since the April 09 episode which put me intouch with MS, which is how i found this wonderful place!

Has anyone every experienced this and do you ever feel like you leave your dr office like you have just had the wind out of you?  YES!!

How long have some of you had to wait for your diagnosis? STILL WAITING!!

Did people say you were nuts? ITs A FAMILY TRAIT SO NOW THEY SAY I FIT RIGHT IN BUT IN SERIOUSNESS NO ONE I KNOW DOUBTS WHAT THEY SEE!!

Did you begin to believe them???  DR THAT HINTED AT CONVERSION BUT NOT OPENLY SAID, NO NEVER!!!

I would really really love to see a study of all people dx with a neurological disorder, just how many were dx with a mental health issue prior to there actual dx? I would expect from the anacdotal respose i've noted just on this MS site, the number would be quite high, you really are not alone with going through this carpola, small comfort i know!

I had the psych eval to rule it in or out, no sign of ever having a mental health issue of any kind, neuro-physch testing that shows i've lost a truck load of IQ points, noted clinical signs of lesions but a negative MRI (questionable) and a negative LP for O bands. Unfortunately, i'm not able to manifest a mental health problem (i might be working on it though lol) or even get my lesions to show themselves beyond just clinical, to make the dx easier for the Dr's.

I gave up Dr's, i cant be bothered defending my mental health and intelligence, when there is evidence that its not the case and the neurological evidence is simply being ignored until the MRI confirms they exist, i just cant be bothered dealing with it at the moment. Eventually my dx will be a no brainer, (lol) i'm conserving my energy, both mental and physical but i hope to soon be ready to get back in the ring and fight, hopefully common sense will prevail, always the eternal optomist!

Cheers..........JJ


1261153 tn?1303909668
i have never heard of conversion disorder. but alot of what you are saying happens to me. i have been on this rollercoaster ride sincemarch of 2009 what a crazy journey. the 1st neurologists didn't even examine me, right away said this is anxiety and depression and he based that decision on my husband working away. too funny he has done this for 11 yrs what a jerk. the 2nd neurologist was bmad because i asked for a second opinion within 2 mths of seeing the other one. basically he said go see a phyciatrist.  in the mean time i have had the phyciatrist report and definitely ruled out mental disorder, only because i marched right in there all screwed up and asked him is this anxiety? he said no way! rushed me down to emerg as he thought ischemic attack. of course for the 15th time in emerg, all negative. 3rd neurologist i seen in feb. very nice man he said definitely not anxiety and depression and yes there is definitelt something wrong. but it sometimes takes yrs to get a diagnoses for anything and to just keep plugging along. he said possibly do mri's every 3-6 mths. again nothing confirmed. this last appt at the u of a where they study  things was a joke. i was all slurred speech right side of my cheek paralized twitching and tingling, dizzy, and off balance and as well full gait walk like i was handicapped. he video taped me but said at this time he has no clue and  basically to quit wasting his time as i have seen to many neurologists already. then i started to cry and said what am i suppose to do  i am trying to cope with this but what is it!!! he adviced me to go home and get help in the home with a social worker for in home help. both mris that i have had show 2 small lesions but according to neuroliogists we all have them. also they have been called small abnoralities. i think it is just a big waiting game. spinal tap was negative. i go to physio  and he seen me all screwed up and he says i look like i have intermitten M.s.  keep a paper trail with dr's or even physio and counselling that is what i am doing. friday i am asking for all my neurologists reports and my phsio reports and take it from there. so please just keep a paper trail and i really feel for you. the strong get stronger!!!! believe in yourself because it is you and only you that knows yourself best. i feel before any dr. tries to label a person with a mental order maybe they should go see a shrink, instead of passing judgement on us!!! stay strong and hang on!!!!!!!!!! day by day and smile the whole way! hugs and take care!!!!!
1289142 tn?1271956973
I can not believe what I am reading........IT IS ME!  I really feel I am loosing my mind sometimes. Like right now I am relaxed, no stress.....both ears are ringing and the top of my head is tingling like bugs. I have 3 white spots in the stem of my brain. I can not count how many MRI's I have had. I was Diagnosised by Dr. Sheramatta at Univ of Miami in April 08. He put me on Betaseron. In my opinion I got worse. Between me and my primary care physican we stopped the Betaseron and now I am being treated for symptons only. I have word phissing, can't walk straight, no balance at all, headaches daily, back pain, tingling randomly all day long.....sometimes from head to toe and backup and believe me.....they scare the crap out of me. I have been diagnosised with a stroke, brain tumor, Stress, MS, depression, anxiety, and a partridge in a pear tree. My children are all upset. They want me to get my records and films, which I have, and go to MD to Johns Hopkins and see if they can figure it out. Bad thing is, I am 56 and long term disability that I paid thru work and currently receive a monthly stipend. With no diagnosis, can I lose my long term???  My new MS Dr. only wants to see me every 6 months! His assistant says she can test me for reptiveness and that will prove how disabled I am and will get approved for Social Security, which my Long Term Insurance Co. is putting me thru for it will save them $. I really have no idea what is truly wrong with me. I have fatigue, very limited in how much I can do.........no endurance. Went to dentist yesterday, got a crown and today I am wiped out! Crazy!
I take one day at a time.......I am going to sit down and list my symptoms and say...OK.......what is my problem. Short term memory is horrible and really scares me. Went to Neuro-surgeon and my back is ok, except for it is straight and should have a curve. She recommends 6 weeks of therapy twice a week heat/massage and 6 weeks of water therapy twice a week. Now that is 4 days of therapy......I might as well forget the other 3 days! She is suppose to call my Primary physican and my MS Dr. and try to put all the pieces together..........I hope & pray she is successful.......but my hopes are not high..........hang in there & keep your records and keep fighting! We are can't be nuts!

Hugs,
Jan M
FL
Avatar universal
Yes, I've been (and still am) there.  My first sx started over 8 years ago...  I won't bore you with my details, but my current MS specialist agrees that by exam I fit the bill for MS.  Needless to say I have beautifully clean MRIs.  At this point she said if I had even on lesion she'd dx me.  What I'd really like to do is stop having MRIs forever.  In 8 years they've never seen anything helpful.

I've had a horrible neuro, two so-so neuros, a NP who said it couldn't be MS if I wasn't dropping things all the time (and that TN striking first my left, and then a few months later my right side, at 34 years of age, was *not* a sign of MS, in her opinion--the neurosurgeon who saw me basically said it couldn't be anything else).  I have a good neuro now, though I don't agree with her about everything (she's not worried about my progression because I have mostly sensory sx--despite her acknowledgement that these sx can be more disabling than some motor sx).  She's sticking with me and knows her stuff and is watching me, so that's all I can do right now.

So, yes, I know what you're going through.  I wish I could say, by 3 years out everyone will have a dx, but that's simply not true.  Some of us will never know.  For me, it's just important right now that I'm getting some treatment for my sx (pain), with or without a dx.  Otherwise I don't know what I'd do.

Stick around, and welcome.

Stephanie
Avatar universal
>>Believe in yourself. by Kathy

Ditto. you'll just stay in no-mans-land if you don't
Avatar universal
Breb,
I've been diagnosed with it all - from reflexive sympathetic dystrophy to "it looks like MS" to "it's all in your head," to "it's in your head all right - it's called MS," to "It looks like MS but your MRI is clear," to probable MS to a conversion disorder to probable MS to suspected somatization disorder. Whew. I'm almost laughing by now, except not being able to walk very well isn't very funny.
I've had objective clinical findings all along but there were still a couple of doctors who couldn't wrap their heard around a clear MRI so they took the easy way out - washed their hands of what their knowledge and ego couldn't handle. Many people who turn out to eventually have MS have to go through this awful "it's all in your head," phase, because, for many reasons, MRIs may turn out clear.  The following link details many of the reasons for this:
http://www.medhelp.org/tags/health_page/7687/Multiple-Sclerosis/How-Can-a-Person-with-MS-Have-a-Negative-MRI?hp_id=161

The MS Society notes that about 5 percent of people with MS have clear MRIs, which means that 1 out of 20 people with MS are crazy until they can find a doctor enlightened enough and patient enough to do the hard work required to eventually rule out all else out and make a MS dx. This is a tricky process and not one that all neurologists want to challenge themselves with. By saying you have a mental disorder they are washing their hands of you and unburdening their limited scope of expertise. Doctors are not gods. They do not have all the answers. And just as you would discover in any profession, you'll find that some are good and some are not so good.
The diagnosis of a conversion disorder or somatoform disorder is very controversial as many doctors and scholars doubt that such a thing even exists. Somatoforms disorders are the diagnostic hangovers of hysteria, which was once thought to be caused by a uterus that became detached and wondered to the brain. How laughable is that? As medicine evolves, so does out ability to better understand what causes illness. And guess what? From the time of Fraud the diagnosis of conversion has steadily declined. (Freud developed the theory behind conversion disorder that basically says they if you're really emotionally messed up, you'll end up with some physical symptoms - and yes Freud was indeed high on cocaine most the time.)
And even if you do put some faith into such disorders, remember that they can neither be proven or disproven, just like MS. A conversion diagnosis is totally subjective, so depending on what shrink analyzes you and what kind of biases they hold, you may or may not have a conversion disorder because many people can fit the subjective diagnostic requirements depending on who is doing the diagnosing. It is interesting to note though that in the 1950s the misdiagnoses rate of somatoform disorders was as high as 30 percent. Today it's about 4% thanks largely to the MRI and other advances in technology. But it goes to show that that diagnosis is largely just a psudo-scientific admission of ignorance on the doctors behalf.
I hold hope that someday we will develop the technology to quickly diagnose MS so that the one of of 20 people with a negative MRI will not be further burdened by doubt from  the medical community and can be spared the suffering that comes with an incorrect psychiatric diagnosis that may not even exist.
For a little history on somatoform, conversion and other psychosomatic disorders and their critiques check out: http://mpkb.org/home/alternate/psychosomatic

Remember that you know your body and your symptoms are telling you that there is  indeed something wrong with your body, not your head. You are not crazy. Hang in there. You are not alone. There are some amazing people in our club.

Hugs,
c.
572651 tn?1531002957
Hi Cisok and welcome to the forum here. You may not realize that the post you added to is over a year old and no longer active. Many people won't bother to read the older posts.

You may want to take a read of a brilliantly written health page,by Silkcut, that we have on conversion disorder ....

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

welcome agian, Lulu
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