Conversion Disorder-Seriously???

[DebDJ]

Hi to everyone! I am so happy to have found this forum-just maybe I'm not crazy afterall! I have been experiencing many sign/symptoms of MS since my early 20's (I'm now in my 50's.) My symptoms would come and go, and although they puzzled me, I did not worry about them: migraines; slurred speech; severe fatigue; pain in my legs (muscle cramps); pain in my right arm that feels like I am being stabbed w/a hot poker, which would sometimes put me on the ground, along w/weakness in the same arm and more I will not bore you all w/now. Although I would mention these various symptoms to my doc at he time, there was always a logical answer: leg cramps-I was a jogger; migraines-I was a young teacher w/stress, etc.  I did not mention the slurred speech to the doc.
In the past 5-7 years, all the above symptoms and more have become so severe, I can no longer teach-my life's passion! I have been to every genre of doc in the world and I hear comments such as: I think it could be MS; I don't believe you've had a stroke; you have a lot of stress, but I don't believe you have any psychological problems; etc....However, the neuros I've seen say I don't meet all the "criteria" bc the "spots" on my brain may not be MS and w/out "lesions" I cannot be dx w/MS. I have inflammation on my spinal cord (thoracic) and had a LP a few weeks ago-still waiting for the results. The doc who did my neuropsychology test said I may have "Conversion Disorder" but was NOT SURE! When I was tested, I spent the day at the clinic and then was handed the Min.Personality test (to complete at 5:00 that same day), which was sooooo long, I nodded off three times while trying to concentrate-impossible! Told the doc I just filled in the last 50 or so questions. AM I CRAZY?!? I read about the CD and think it is the most ridiculous thing I've heard-serioulsy??? Freud??? A cocaine addicted sex maniac??? Is my uterus "floating into my brain!!!???"
I am really an upbeat, positive person and believe myself to be a VERY strong woman, but I am at my wits end!!! I do NOT believe I'm crazy, but this CD crap IS!!! (sorry for my "French") Please, would someone tell me they have experience something similar while trying to discover what in the world is going on w/ our bodies?
Hope you all are well
Dee

[jennypeg]

HI I think it would be great if this forum was kept open, I am too in the cross roads of dx's. I had a fall in Jan 2015, face planted the floor out of the blue, lost  feeling and sensation in my right leg... 5 months later still have some drop foot some loss of sensation incrdible fatigue in my leg and shock pain. Had to demand another recent MRI - awaiting to have it done. My past dxs are Fibromyalgia and M.E, Migraines that look like strokes and Ive had an episode of IH. My dr I saw today for the 1st time clearly stated I had Hyper reflexes and impaired sensation when I asked what it could be, he replied if that MRIs are clear then likely its Anxeity! Its getting easier but clearly its just not right, I have a feeling as Im here in the UK I'll get put down the "Physiological' path. Ive already seen a CBT in the past he said there was no reason for me to be there, I have had a LP in the past not sure what for but it was clear. I have no idea whats happening but its scary and its affected my life. Who would want that!

[Lulu54]

are you  in the queen city just south of me here in the gem city? If so, I would get on the phone and schedule a second opinion visit outside of your home town.  I would also do like immisceo suggested and schedule a neuropsych appt just to get that question resolved.

I am so sorry you have been thrown this curve - i hope it gets settled quickly.
-Laura

[immisceo]

I'm so sorry your appointment was such a negative experience. Have you had any recent MRIs? I ask because you mention no lesion from ~30 years ago. If there are still no lesions, then re-thinking the original diagnosis is appropriate. Over that period of time, it would be unrealistic to not have MRI evidence of MS. Please remember, conversion disorder ≠ 'crazy'. It can simply means 'we can find no physical etiology for these symptoms'. Yes, it is sometimes used by medical professionals who don't like unexplained cases or cases that don't fit into a neat box, but it is also sometimes a valid diagnosis that benefits greatly from treatment targeted to its specifics.

This is one of the reasons why we always recommend folks on here (if having a bear of a time being taken seriously by specialists) to get a full psychiatric work-up. That way it can be taken off the table if that's not at all what's at play. Alternatively, it can indicate that yes, this is the more beneficial diagnosis.

None of the above is to imply there is any excuse for the unprofessional behaviour you experienced, rather that it may be worth looking into/ruling out. The point is to feel better, right?

[missiefromcincy1]

OMG!!!  I cried all day yesterday,  diagnosed with CD after ten minutes meeting with this Neurologist.  He just happened to have a Psychologist with him training in Neuro . I am a college grad.  I work for a hospital in my area.  I am a strong person. Diagnosed in my 20's with MS (no lesions) but symptoms.  It gradually got better.  The same Neurology group now diagnosed me with Conversion Disorder.  The difference is I am 54 years old and the neurologist that I saw in my 20's retired.  All the same symptoms as MS. But now they this I am mentally ill.  I wish I had taped the office visit.  The Doctor was so demeaning.  I thought it had to be some kind of cruel joke.  Did not even look a me the hole time, looked down to the floor up to the ceiling on he computer .  As I was crying not offer me any tissues , comforting words nothing.  When I would ask questions he would get visibly aggravated and said he had to keep his schedule that he didn't have time to answer so many questions that I would have to reschedule for more discussion.  There wasn't any discussion it was all him talking.  I don't want to have MS but I don't want to be told that I am crazy.  Can someone help me tell me what they would do ?  Missie  

[marylou63]

I did see that the posts were old but I have had feedback and the first lady I responded to summed up exactly how I feel. I searched CD on the whole site and that's what came up. I have searched for specific forums for CD somataform disorder, mixed dissociative disorder and functional neurological disorders all of which seem to be the same name for an extremely 'rare' condition that lots of people in Britain seem to have. There doesn't seem to be a forum for that specifically.  Perhaps I am not looking in the correct places? Thanks for your advice
marylou63

[Lulu54]

I'm glad you found this entry about CD - you probably didn't notice that it is several years old and many of the people who wrote are no longer active on this forum.

Anyway, it has lots of good information and support.  Immesceo's analysis of the NIH and getting treatment there is spot on - it is so much harder for those of you in the UK.  My challenge to the doctor would be - 'if you think this is Conversion Disorder then what treatment will you give me for that?'  

We often tell people here who are told their problem is psychological, to humor the doctor and go see the psychiatrist and resolve that question.  Once the therapist says it isn't in your head, then you can go back to the original doctor and ask what he intends to do next.  Sometimes you have to do that to get it off the table for discussion.

I'm sorry for Freud's changing the landscape of treatment for women with his hysteria view and hope you can get past that and get the treatment you  need.

[marylou63]

Thank you, I was beginning to give up the will to fight on but now with renewed vigour I will fight on but will take my very supportive new husband with me!  If he vents what he feels about my diagnosis we should be in for an entertaining consultants appointment.
Thanks once again Kelly 97

[marylou63]

Thanks for that ....but I hasten to add I'm not alone in all this. I have a wonderful supportive new husband and family. My family have always supported me and never believed the diagnosis. It's just on the day I went to the Neurologist I wasn't expecting a diagnosis just a review of my symptoms and where to go next. So Accordingly did not take anyone with me. The diagnosis for someone who has never had any mental health issues and a past managing a very stressful job competently. All my relapses follow viral or bacterial infections or surgery. my symptoms are worsened considerably by eating wheat dairy and highly processed foods. I also have optic neuritis.  Everything that I read about  CD or as my diagnosis read functional neurological disorder does not apply to me. When I went to see my Dentist recently he openly laughed at the diagnosis and said 'you are the most grounded and level headed person I know'. I am not intending to offend anyone that genuinely has CD but I know for definite that this diagnosis is wrong for me. If anyone who was an MS specialist read my medical history  (2 volumes of) and put the pieces together with the MRI scan and Optic neuritis it wouldn't take them long I'm guessing.

[marylou63]

Thank you, I was beginning to give up the will to fight on but now with renewed vigour I will fight on but will take my very supportive new husband with me!  If he vents what he feels about my diagnosis we should be in for an entertaining consultants appointment.
Thanks once again Kelly 97

[immisceo]

Unfortunately, I think it takes a lot more stamina to get a proper look-in in the UK due to the nature of the NHS and its funding constraints. You have not been well served by the professionals who have seen you.

I wouldn't get too tied to a certain diagnosis. Many physical issues and diseases mimic MS, and it may not be what's ultimately causing your collection of symptoms.  But at the young age of 50, you deserve to have your severe symptoms comprehensively examined.

It is unfortunate that you are in the position of having to fight these battles alone, but if you can summon the inner strength, please consider pushing for a fresh neuro consult, preferably with an MS specialist if at all possible.  

[anon07072023]

What the heck is wrong with these doctors??? It's not all in your head. It makes me so mad when I hear stories like this. I initially presented with lesions in my spine & they said no lesions in my brain. I continued to have symptoms, worsening of symptoms, & new symptoms. No one listened. I ended up leaving & traveling to an MS Center. The neuro there looked at my MRI & said they missed seeing 6 lesions in my brain & 3 T1 black holes. I was then given the diagnosis of MS. Don't give up.

[marylou63]

I have read your post with tears rolling down my face. I too am a teacher or rather was. I have had very clear and scary relapsing remitting MS symptoms for 17 years and have an aunt who suffered in exactly the same way who was diagnosed with RRMS. After a really bad relapse that ultimately ended in divorce .. and I hasten to add it was in that chronological order I was finally diagnosed with Mixed dissociative ( conversion) disorders. I have 3 clear lesions on my spine from my MRI. I am presently unable to walk unaided, have poor vision, tremors, numbness, pins and needles, lack of bladder and bowel control and poor memory etc. My GP has never heard of the condition so I decided to read up on it. It is soooo far removed from what I am going through and what is occurring with me it has now made me question everything. I may be being sceptical but does anyone think it could be to do with funding as apart from CBT and taking Gabapentin for the spasms I have no support or help to get better. I am just left in Limbo... and they wonder why I feel just a little fed up. The Local Neuro thought I was just a time waster and as I went on my own I had no family to back me up. He wrote to the neuro at Kings and the report said that the 3 lesions were not connected with my symptoms and he felt it was psychological. Where do I go now ? I know what is wrong with me and so does my family but I have been labelled as some dysfunctional depressive malingerer. I know exactly how you feel believe me. marylou63

[nholingsworth]

Netty,

I was wondering how you are doing now? Did most of your symptoms go away? Feel free to check out my story below all these posts..I went through something traumatic too, and within a few days started exhibiting one symptom after another..like you.

I still suffer from some of the symptoms to this day though..so was wondering how you are doing.

[nholingsworth]

One other thing ladies..

There is no denying that women do have a much greater propensity for anxiety and depression-type disorders. Conversion disorder may fall into some of those same categories.

Believe me, I was more than irritated when I kept going from place to place without any official diagnosis. It wasn't until I paid cash for the MRI, got my peace of mind that it was all clear that I started feeling better.

So many people don't even have an awareness when they are stressed..and it sounds like many of the ladies on here are extremely stressed. I know it's easier said than done but try to go to the gym if you can, have some quiet time, find a meditation video online, etc. Distract distract distract. That was what fixed me temporarily.

Stress is killer!

[nholingsworth]

Hi everyone,

In my case I believe the doctor actually got it right. I had never heard of conversion disorder, so all along I thought I probably had multiple sclerosis. I started experiencing symptoms last year, literally only a couple days after a very stressful event. That was a part of the giveaway, along with the fact that my symptoms in my left leg started subsiding as soon as I got the MRI results back and was told I didn't have MS.

I am 30 years old, female.

Conversion disorder vs. MS:

1. If the onset of symptoms progresses rapidly, and you have a laundry list of a variety of different symptoms from the very beginning, it's probably CD (I had vision problems, numbness/pain in my left foot that progressed to my entire leg and then my entire half of my body, I couldn't think straight or even understand what people were saying to me, couldn't urinate, etc). Basically with every passing week, I would tack on a new symptom and get worse and worse.
2. Are you a highly anxious person? (I know I am)
3. Did you go through something traumatic recently/something extremely stressful?

And again, what added to my confidence in the diagnosis was the timing of everything, and how I started getting better after I was told I didn't have MS.

My heart goes out to all the women out there who have been diagnosed with that horrible disease. My goal is to one day help those people who have had the bad luck of being diagnosed with MS, Parkinson's, etc. I despise those diseases.

And by the way...as I am typing this email, I am feeling some numbness in both my feet. Just thinking about CD elevates my anxiety levels I suppose. :/

[spiper0531870]

This is exactly what had happen to me... but I don't have conversation disorder I had testing done, as you don't have conversation disorder either... I'm convinced I have MS, all my symptoms point to MS but I can't seem to get any doctors to take me serious! I feel hopeless, and I don't know what my next step should be, now doctors say I have somatization disorder which is basically CD, also they keep saying I have fibromyalgia but I just don't believe these diagnoses I really feel in my gut it's MS... what should I do where do I go, also I have state funded insurance and I feel like I don't get the best care because of it... anyone help me?

[jonijo689]

Ok so I have calmed down now. I was like June on here and felt offended with my diagnosis. My life is good,happily married, four children, four grandchildren and Im happy. No medical issues until now. So this diagnosis caught me off guard. So as a person that never takes pain pills and is a fighter Im fighting back. Researching has helped. Articles I've read state that in order for an individual to be diagnosed with somatoform disorder, they must have recurring somatic complaints for several continuous years. As I stated, I have been healthy up until the spell that put me in the hospital last week. I'm not going to dwell on this issue as I have a life to live, but I AM going to get the diagnosis overturned! I hope this post helps someone that winds up here like I was....dont give in FIGHT!

[jonijo689]

I just did a week in the hospital!
Had a spell like a mini stroke...blurry vision, shaky, high blood pressure, incoherent.
Tests upon tests and nothing
Well got released today with the conversion disorder diagnosis!
WHO IN THE HECK CAME UP WITH THAT?
You can't figure it out so you make me think I'm crazy? Thank you very much. Why don't you just dig my hole now!!!! Don't they realize what they do to you when they tell you that crap?
I can hardly walk, eat, or function from whatever happened to me and you cant put your finger on it so you rub salt in my wound and make me think Im nuts!
I will get to the bottom of this and fight for other women that they pull this on. Yes they were all men!!!!

[NettySketty903]

I was traumatized by my ex husband, he pulled a shotgun on me and I barely got out of the house alive. About 30 minutes later my thumb started twitching. 5 days later my arm started trembling. I went to a neurologist and he said I had parkinsons. I went home and cried for over a month. When I came out of my fog from being diagnosed with parkinsons I made an appointment with a 2nd neurologist. He also told me I had parkinsons and I left his office crying my eys out and being the most depressed I have ever been in my life. So a few months later I went out on a limb and made an appointment with a 3rd neurologist. She also said I had parkinsons and wanted to put me on Levadopa. I refused. I made a 4th appointment with a neurologist and he spent 2 hours with me and said I had 0 chance of having parkinsons. He diagnosed me with conversion disorder. Thank God for conversion disorder. If I had listened to the 1st, 2nd and 3rd neurologists I would be in a levadopa stupor and waiting to die.

[June12311]

I have also been told today that I have CD .  I'm a 38 year old female who has had severe back pain for 9 years and a numb right foot for the past seven. I was told that I had excessive wear and and arthritic changes to my lower back and this was the cause. I then started to have had poor bladder that has got gradually worse over the past 7 years. I was told this was due to a prolapse.  So I just carried on with life as normal.  I then started to go blind in one eye 10 months ago when I moved from sitting to standing or was tying my laces and such like and have reduced colour vision and sight in that eye permanently.  About this time I also started to have have a numb right hand and have dislocated fingers on that hand and not felt it in the last few weeks.  My MRI was clear as was a spinal tap. My eye pressure is 28 in my left eye and 18 in my right eye. I'm booked to have a EVP test next week but feel so frustrated.  I am not depressesd, have a great family and friends and have been lucky to have very few traumas in my life that I can complain about. I feel offended by this diagnosis.  I know that it is preferable to MS but deep down I know it's not the right diagnosis and means that I am not gettiing the right treatment.

June

[mon79]

Thank you for your story..I am going through the same thing I have MS -Symptoms being treated for them but yet due to my last neuropsychological test was  done 2011 Somatization disorder now the neurologist I been seen since 2007 thinks its Somatization Disorder with abnormal gait he cannot give a clinical diagnosis of  MS due to I do not have lesions on the brain  I have spots/plagues due to having a history blood pressures I have continue to go down hill..I have lost my job...This has put on strain on my career and my family due to not having a clinical diagnosis...

[DebDJ]

Thanks for your encouragement, Dear.  This is a wild ride, isn't it?!?  I do hope you are doing well...

Keep looking UP!

Dee

[Ojibajo]

People with Conversation Disorders? I thought we called those people "men".

That's the most ridiculous thing that I have ever heard. I hope that you can find a decent neurologist who can give you a proper diagnosis and hopefully some symptom relief as well. Best of luck.

[DebDJ]

Dear Girl-

TY for your encouragement.  I will keep hoping to find that "one special doc" who will make "All This" just GO AWAY!

Hope you are doing well : )

Dee