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Conversion Disorder???

JIBBAJABBA

JIBBAJABBA

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Hi, :)

Firslty apologies for this long post!
But let me exlain why I am here posting on a Mental Health Forum.

I came across this forum after I had been suffering from suspected Neurological Disease suggestive of MS for quite some time. :scared:

Starting from 1990, I have had many many varying symptoms spaced out in time, ranging from numbness, pins and needles, disturbed vision, double vision, balance problems, inconitinence, speech problems, swallowing problems, spasms, seizures, sensory problems to name but a few....the list goes on.

Incedently I was also diagnosed with Megaloblastic Anemia in Nov 2007 and was in advanced stages of the illness, and this illness if left undetected for some time can also cause neurological damage.

I have had an MRI/CT scan where 'some abnormalities' were found although this was not apparently of any great concern to my neuro at the time.

However, after recently having my 2nd Neuro appointment and continuing to have such disabling not to mention life changing symptoms (I am now in a wheelchair and have lost my driving licence amongst other problems I have encountered) he is still to find anything ORGANIC to answer for the neurological symptoms I have and continue to experience.

So......it has been suggested (by my neuro) that I may have an illness called CONVERSION DISORDER!

Hmmmmm......whats that I heard a lot of people saying when I told family and close friends??

In a nutshell....CONVERSION DISORDER IS A PSYCHIATRIC ILLNESS
........a disorder where a person gets symptoms which suggest a serious disease of the brain or nerves (a neurological disease).
For example, some of the symptoms include blindness, deafness, weakness, paralysis, numbness of arms or legs to name but a few.

The symptoms usually develop quickly in 'response' to a stressful situation and apparently you unconsciously 'convert' your mental stress into a physical symptom resulting in something which can mimic a neurological illness!

So......I have in the past studied Psychology and new what CD was so once this had been suggested I came home, still a bit shell shocked to be honest as when you have been told all along you have probable MS, then all of a sudden it oh no I think you may have CD, my mind immediately though my god, I cant have a mental health illness.....so I searched and searched the net for more information on Conversion Disorder.

I found a few american websites with posts from a few people in the UK but I wanted to be able to discuss these problems and my symptoms with people here in the UK and hopefully with people within the area or surrounding area's of where I live.

And I guess the rest is history.....this forum has provided a safe, friendly and trusing enviroment for me to come here and talk to others about something that lets face it is still so stigmatised as are a lot of mental health illnesses and unless your in that situation or know someone who is, then a lot of others just dont understand what we are going through.

So as yet I think I am the first person on the site to poss have CD or mention the illness so hopefully this post will break the ice for anyone else who either is undergoing investigations for CD or who had been diagnosed with it and wants to talk about it.

From what I can gather and the research I have done myself I can not find anything else in the UK where there is such a large support network as this site.

So I for one will certainly be using the site not only as a sounding board but I have also made some great forum friends along the way and have hopefully contributed to what I have found to be a fantstically informative and welcoming community. :clap: :):clap:

Regards

JibbaJabba xxx
 
Fedup

Fedup

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Thanks for the above ......... i for one hadn't heard about it.

:hug: You takecare now.
 
JIBBAJABBA

JIBBAJABBA

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Conversion Disorder

Thank you......

From my experience there isnt a lot of people around who openly discuss this but then again a lot of folk dont want to talk about Mental Health issues due to the negative attitude some people still have. But lets hope with this place a lot more people will come along as we are able to talk honestly and openly here without the fear of being called or rejected.


Its def an interesting subject and I am doing a lot of research on CD so hopefully I can put some informative post on in the future and help others who may be baffled by it all!

JibbaJabba

xxx
 
daffy

daffy

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Ive never heard of this either, it does sound very distressing but im sure youll find help and support here
 
JIBBAJABBA

JIBBAJABBA

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Conversion Disorder

Thanks Daffy,

Yeah I am definately getting my head around it with the help of you guys and talking to youall....also found some very interesting onfo on internet too so I will just have to wait for my referral to my Psychiatrist (if thats who Im being referred to as I dont as yet know) and see what he has to say. Just for the record Im still having neuro physio and saw her today and she still thinks at some point I will get a diagnosis of MS, however until then I think its the Cd road Im heading down so who better to take that journey with than all you guys on here!!!

Many thanks:)

JibbaJabba xx
 
daffy

daffy

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I dont mean this to sound stupid but i am curious. You say you can get blindness or paralysis when stressed but when the stress is gone would you recover.

Please dont take this the wrong way i am genuinley curious:hug:
 
JIBBAJABBA

JIBBAJABBA

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conversion disorder

Hi Daffy,

As far as I am aware the symptoms come on as a result of emotional conflict, stress or trauma which your mind apparently cant cope with.....so assuming its caused through stress, then I would assume that once the issues regarding the stress related symptoms are dealt with then theoretically you should recover from the symptoms....

However, I have read articles that have stated that if someone suffers from this disorder and it lasts for more than 6 months then it is more likely to be something that reoccurs and has some lasting effects.....

Sorry its not a definitive answer but as I have not been formerly DX yet if at all, Im not sure of the outcome but I will certainly keep you all updated once I start my treatment/therapy or whatever they have planned for me next and will keep updating as and when I find out more from my own research.... :rolleyes:

jibbaJabba xx
 
JIBBAJABBA

JIBBAJABBA

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Joined
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Messages
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Location
NORTH EAST ENGLAND
Hi again,

Im 'bumping' this post up again as now we have the Conversion Disorder forum Im hoping people 'passing through' might read this and identify some similarities themselves....
From the post I have recieved back I think its def an illness which a lot of folk are unaware of so hoping to raise the awareness of it as well as the various other Mental Health Illnesses!

Hope this is allowed Mods and apologies if not....???

JibbaJabba xx


Hi, :)

Firslty apologies for this long post!
But let me exlain why I am here posting on a Mental Health Forum.

I came across this forum after I had been suffering from suspected Neurological Disease suggestive of MS for quite some time. :scared:

Starting from 1990, I have had many many varying symptoms spaced out in time, ranging from numbness, pins and needles, disturbed vision, double vision, balance problems, inconitinence, speech problems, swallowing problems, spasms, seizures, sensory problems to name but a few....the list goes on.

Incedently I was also diagnosed with Megaloblastic Anemia in Nov 2007 and was in advanced stages of the illness, and this illness if left undetected for some time can also cause neurological damage.

I have had an MRI/CT scan where 'some abnormalities' were found although this was not apparently of any great concern to my neuro at the time.

However, after recently having my 2nd Neuro appointment and continuing to have such disabling not to mention life changing symptoms (I am now in a wheelchair and have lost my driving licence amongst other problems I have encountered) he is still to find anything ORGANIC to answer for the neurological symptoms I have and continue to experience.

So......it has been suggested (by my neuro) that I may have an illness called CONVERSION DISORDER!

Hmmmmm......whats that I heard a lot of people saying when I told family and close friends??

In a nutshell....CONVERSION DISORDER IS A PSYCHIATRIC ILLNESS
........a disorder where a person gets symptoms which suggest a serious disease of the brain or nerves (a neurological disease).
For example, some of the symptoms include blindness, deafness, weakness, paralysis, numbness of arms or legs to name but a few.

The symptoms usually develop quickly in 'response' to a stressful situation and apparently you unconsciously 'convert' your mental stress into a physical symptom resulting in something which can mimic a neurological illness!

So......I have in the past studied Psychology and new what CD was so once this had been suggested I came home, still a bit shell shocked to be honest as when you have been told all along you have probable MS, then all of a sudden it oh no I think you may have CD, my mind immediately though my god, I cant have a mental health illness.....so I searched and searched the net for more information on Conversion Disorder.

I found a few american websites with posts from a few people in the UK but I wanted to be able to discuss these problems and my symptoms with people here in the UK and hopefully with people within the area or surrounding area's of where I live.

And I guess the rest is history.....this forum has provided a safe, friendly and trusing enviroment for me to come here and talk to others about something that lets face it is still so stigmatised as are a lot of mental health illnesses and unless your in that situation or know someone who is, then a lot of others just dont understand what we are going through.

So as yet I think I am the first person on the site to poss have CD or mention the illness so hopefully this post will break the ice for anyone else who either is undergoing investigations for CD or who had been diagnosed with it and wants to talk about it.

From what I can gather and the research I have done myself I can not find anything else in the UK where there is such a large support network as this site.

So I for one will certainly be using the site not only as a sounding board but I have also made some great forum friends along the way and have hopefully contributed to what I have found to be a fantstically informative and welcoming community. :clap: :):clap:

Regards

JibbaJabba xxx
 
M

mollycat

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Mar 25, 2008
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Location
Buckinghamshire
Conversion disorder questions??

Good morning.

I have read your post with interest and I too am in the process of assessment for conversion disorder / somatization ??

I have like yourself been investigated for probable MS and have over 10 lesions showing on my mri ( without contrast ) but after a clear LP and evoked potentials my neuro is now suggesting conversion disorder and I am waiting to be referred to a neuro psychiatrist, although she did not mention CD directly she went on to describe the symptoms and signs of the disorder in great detail; I asked her outright if she was referring to CD and she just said she was not a diagnosing party to neuro pshychiatric illness and the referral would be enlightening.

I read your post and really feel most of what you explain could be me too..I have many symptoms of MS and have been struggling with them for around 5 years, at the last appointment with neuro it was clearly wrapped up in her opinion as CD! as she cannot find any further clinical eveidence of MS and is now saying the lesions have probably been there from birth or a viral CNS infection in the past at somepoint i was unaware of.

I too have some background knowledge of CD from college studying psychology ( thankfully as neuro is very abrupt and told me to "go away now and get on with my life"!! ) as you say in your post, do not judge me until you walk a day in my shoes! very apt indeed.

I cannot find any really useful sites on the web and would really appreciate your advice on how to cope and deal with this as I am struggling physically and emotionally. I understand the mechanism for the symptoms and believe the mind is a powerful suggestion and therefore causing me physical pain. I am not due to see psychiatrist until the middle of July and am still in limbo and pain until then and am just so grateful to have found this site. It really does seem that conversion disorder is a little talked about subject with much to discuss! once more people find like minded non judgemental others as this forum seems to be.

Many thanks in advance and look forward to any replies and or questions if i can be of assistance to others then it makes "coming out" more worthwhile.

Mollycat:)
 
D

Dollit

Guest
Hi Mollycat and welcome to the forum. I hope you and JJ can get some mutual support re your CD and that the rest of us can help too. It's really friendly here and a good place to be. :welcome:
 
JIBBAJABBA

JIBBAJABBA

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Messages
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NORTH EAST ENGLAND
Hi Mollycat, :welcome:

Hope your doing ok this bright and sunny morning (now that the snow has gone :-( lol

Delighted to hear from you and see that you too are experiencing similar symptoms and promlems to me!

I have only had an MRI/CT scan and unfortunately my neuro in a nut shell, refused to carry out any further tests LP EVP etc as he felt that my probs were more psychological....contrary to several other Drs however I wait with great anticipation for my evaluation! lol

I have to admit it was for me a bit of a shock to be told all along probable MS, then BANG poss CD, as I like many others thought NOOOOO, I CANT have mental health problems....but hey if thats whats making me so ill, I really dont mind what part of my body is causing it I JUST WANT IT TO GO AWAY!!!

So....how am I coping with it?
Well I have to admit a supportive husband and daughter are my rocks and they have been throught this WITH me every step of the way.....hosp admissions, me being loaded up intreveniously to stop the severe muscle spasms I have, me sleeping for days on end as the fatigue is a MAJOR problem for me, assuring me when I get 'face drop' and my face and mouth looks lop sided that Im still 'gorgeous' ha ha to them anyway lol, he cuddles me during the night when I wake up with my arms and legs rigid and shooting out and hit him etc etc etc I can go on and on about my symptoms but I am fairly confident you will know exactly what I am talking about as you will have prob suffered from some if not all of them yourself at some point!
I think I also had to look at the whole picture....not so much OH MY GOD I may have some form of psychological illness, but OH MY GOD I have an illness which is debilitating, causing my life to change so dramatically that Im now existing to a certian degree, its causing me to have to use a wheelchair outdors and 'furniture' walk indoors or use my sticks, and look and think.....OK, whatever it is that is causing ALL these neuro type symptoms is VERY VERY real, its NOT all in my head, the pain is REAL, the spasms are REAL, the muscle weakness is REAL etc etc etc and it made me realise that it really DOESNT matter what the CAUSE is, I NEED the results of that cause treated and thats all that matters!
Physically I am disabled....lost my driving licence with the seizures and spasms, loosing my job (ambulance driver/attendant) obviously Im not safe to drive or do my job at the moment, cant ride my motorbikes anymore and the nbiking scene was a major part of my social life, I have to rely on my husband and daughter so much I hate it, I cant get out mon to fri as hes at worka dn icant push myself more than a few feet as the spasms start and the fatigue kicks the poop out of me, so physically Im very restricted...but on my good days I manage....I still potter around the house, with the help of my fab OT I have lots of aids around the house to help me manage, perching stools, bath lifts, shower stools etc, so I do try to maintain as much independance as my disabilities allow, but emotionally...well thats another story isnt it!!
Im normally 'up' about it all.....I think well I could be so much worse, but then I get days when I feel totaly sorry for myself and think Im the only one with problems....only natural I think after ive been so active and independat then Im confined to a wheelchair....but yes I DO have days/nights where I cry and wish for my old self and old life back, I bleet onto my husband that I feel like Im a burden to him and Im stopping him from doing things hes wants to do...hes over protective lol, and I hate that my daughter at such a young age has become a carer for me....but then I think thank god for them both and my extended family (inlaws and very special and good friends) as without them all and their never ending support I would have honestly sat in a corner and rocked!

So...sorry for the long winded posts Im a waffler, lol but I hope this have given some help and an insight in my life as it is at the moment with the poss diagnosis around the corner of CD....like I say I with with great anticipation to hear what it turns out to be......

This site truly is a godsend and I can come on here and say whatever I like, however I feel, good or bad, and NOBODY jugdes me or ridicules me....all I have had is support and advice and honesty.....so I do hope you will be sticking around Mollycat as Im sure I along with many others here will be able to help you and you will be able to help me and others as the more people in our shoes who come here and discuss things the more awareness we will raise and lets face it, stigmatization is something we are all trying to get rid of so TYPE away my dear......

Incidently where do you live?? Local forums are a good way of raising awareness in your local community too!!

I also couldnt find any usefull sites in the uk until I stumbled accross this one, I contacted the administrater Mischief and asked about a CD forum as there wasnt one at the time, and I have to admit the response I got was fantastic, he added the CD forum, and I am in the process of writing an article for the forum just to give a bit of an insight to CD and I also expressed an interest within my local area and have now become a moderator for my local SOUTH TYNESIDE forum which is great as I can now start raising awareness withing my local community as like you say, this is a very important subject which I believe is still in the closet a lot so lets get a few more people here who maybe up until they find sites like this have nobody to talk to!


Take care and look forward to you being a regular poster on the CD forum and on the site in general!!


JibbaJabba xxxx :grouphug:


Good morning.

I have read your post with interest and I too am in the process of assessment for conversion disorder / somatization ??

I have like yourself been investigated for probable MS and have over 10 lesions showing on my mri ( without contrast ) but after a clear LP and evoked potentials my neuro is now suggesting conversion disorder and I am waiting to be referred to a neuro psychiatrist, although she did not mention CD directly she went on to describe the symptoms and signs of the disorder in great detail; I asked her outright if she was referring to CD and she just said she was not a diagnosing party to neuro pshychiatric illness and the referral would be enlightening.

I read your post and really feel most of what you explain could be me too..I have many symptoms of MS and have been struggling with them for around 5 years, at the last appointment with neuro it was clearly wrapped up in her opinion as CD! as she cannot find any further clinical eveidence of MS and is now saying the lesions have probably been there from birth or a viral CNS infection in the past at somepoint i was unaware of.

I too have some background knowledge of CD from college studying psychology ( thankfully as neuro is very abrupt and told me to "go away now and get on with my life"!! ) as you say in your post, do not judge me until you walk a day in my shoes! very apt indeed.

I cannot find any really useful sites on the web and would really appreciate your advice on how to cope and deal with this as I am struggling physically and emotionally. I understand the mechanism for the symptoms and believe the mind is a powerful suggestion and therefore causing me physical pain. I am not due to see psychiatrist until the middle of July and am still in limbo and pain until then and am just so grateful to have found this site. It really does seem that conversion disorder is a little talked about subject with much to discuss! once more people find like minded non judgemental others as this forum seems to be.

Many thanks in advance and look forward to any replies and or questions if i can be of assistance to others then it makes "coming out" more worthwhile.

Mollycat:)
 
M

mollycat

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Thank you for the warm welcome!

Good afternoon JibbaJabba, and Dollit. :hug:

Thank you soooo much for the replies and welcomes, it means a lot.

I found it difficult to reply to your heartfelt post JibbaJabba, it really struck home that "something" needs to be done to raise awareness and help remove stigma's attached to any form of psychological disorder in the UK.

I am in Buckinghamshire and do not seem to be able to find any support groups / help in my area as yet; after extensive searching on the good old web. I would very much love to hear from people in my area and am more than happy to help facilitate / co-ordinate the forum in my area.

If you bear with me I will try to ellaborate a little as to how I have found myself on this forum as you have.

My GP's surgery finally reffered me to a neuro 18 months ago after years of unexplaned symptoms and motor issues, I had been seeing my GP for 5 years and him insisting it was stress / depression, I have been assessed for depression and anxiety lots of times by him and psychologists as yet none of them can attribute my problems to depression. I have been treated with contempt by my GP and was only referred to a neuro by a locum GP by a complete fluke when he was on holiday, I have taken his antidepressants on 3 seperate occasions ( over 5 years ) as that is the only treatment he had ever offered and had councelling privately. ( 3 councellors cannot find any depression or problems lurking in my past) He has accused my husband of abusing me, accused me of hiding my depression and its all in head!!, and because my husband gets very upset with him ( ie: when he is patronising, dismissive and rude..) he is now saying this is ALL caused through conflict in my 20 year marriage! My neuro has been recently swayed by this and has removed the probable diagnosis of MS in favour of CD all based on GP hearsay. She has never asked about my marriage or depression herself but at last appointment she blamed my husband to his face of abusing me and said the obvious problems in our marriage were causing it. HOW he kept his cool, knowing that the info she was basing all this on was GP hearsay I will never know, I was just shocked and hurt to the core and was unable to speak to her. She went on to describe conversion disorder and my current referral to psychiatrist, dismissed all my symptoms ( I had not seen her for 8 months and was really struggling with my motor tremor and stiffness etc in my right arm and she did not even examine me! she had made her mind up so no point.)and we left.

My Neuro in MK was 95% sure this was MS " Your results are 95% certain it is MS - see you in 8 months" and out of the door....totally shell shocked and devastated! I had not really heard that much about MS and left feeling scared and alone. - My results were passed onto to the full panel of neurologists in Oxford they all agreed with her findings on examination and the MRI results 12 months ago and wrote me a letter to that effect. ( "this will turn out to be MS!!!" ) I had had many motor symptoms over the years mainly in the upper half of my body on both sides at different times, and lots of sensory symptoms you describe yourself JibbaJabba, my problems remain thankfully back at a baseline after a pretty bad episode in dec, jan + feb where i lost the use of my right hand / arm ( I am right handed also ) for the 3 months. It is hard to accept for me that the complete turnaround happened so quickly AND being told in a very un-compassionate manner i guess has NOT helped at all, "Go away and get on with your life!!!"

I also like you am happy to accept a diagnosis of CD IF it will help the daily discomfort and symptoms, after all the reason I went to my GP in the first instance was to essentially "feel better!" so if this can help me then bring it on!! but sooner rather than later please. I am really looking forward to it strange as it may seem, as I do need some answers and help from somewhere. I have never had a treatment, pill or physio, I have never had any help physically, and am treated with contempt by both my neuro and GP, and welcome anything / anyone that can actually help, it does not matter what they call it, it is sooo real to me and very disabling in many ways, I just would like to feel "human and repected" again. :confused:

This post is early days for me in both probable MS and probable CD, I was still in fear, denial, anger, of MS and now CD I am staying as positive as I can be, and working towards the lighter "acceptance" and "moving on" but it has been a long road and I flip between all emotions daily, mostly we all - me, hubby and daughter "get on with our lives " best we can, it does NOT dominate at all and this is the first time I have found the courage to type or speak of it or join a forum. So thank you ALL for listening and being there, I just needed to get it out! I don't want to burden any one, the only people who know about any of it are my hubby and daughter so i do not as yet have an extensive support network and the neuro's comments and GP's attitude towards us are taking thier toll on all of us. :scared:

I apologise for the long RANT and waffle, I seem to have opened the flood gates and now cannot stop....:LOL: I hope you all find your answers soon and are feeling good today, Thank you all, thank you.

Mollycat xxx xxx xxx:hug:
 
D

Dollit

Guest
Mollycat - thank you for the courage it took to write that. Both you and JJ are very brave people. And this goes for both of you, you are not a burden and after all this time of keeping quiet you're bound to have a lot to say, so say it! :hug:
 
JIBBAJABBA

JIBBAJABBA

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(y)Thank You Dollit,

That message means a lot....hugs xxx

Mollycat - thank you for the courage it took to write that. Both you and JJ are very brave people. And this goes for both of you, you are not a burden and after all this time of keeping quiet you're bound to have a lot to say, so say it! :hug:
 
JIBBAJABBA

JIBBAJABBA

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Hi Again Mollycat,

I too am getting slightly upset but more so irritated at the treatment you have endured at the hands of insensitive medical 'so called' proffesionals!

Like Ive said regardless of what we end up being diagnosed with we STILL need help, treatment whether thats meds or therapy etc and we are STILL human whether our illnesses are organic in origin or are Mental Health Issues.....

Why do we continue to get treat in such an appauling manner!

I thinks its perfectly normal to be in denial and Im sure some folk with still say Im still in denial about the poss CD diagnosis but its like spending your whole life as a woman only to be told oh by the way your actually a man!!!

I have been lucky in that my GP has been very supportive with me and still thinks its MS, but has advised me to get the evaluation done anyway and if its CD then great they can start treating me accordingly....and if its not then its back to another Neuro for a 2nd opinion!

I am on MS medication which does help my symptoms although my last Neuro says that proves nothing apparently!!

Im on medication for the spasms and muscle spacticity and rigidity, I take medication to help with the urinery Inco, and another one for the neuropathic pain and pins and needles, tingling, burning sensations etc etc etc, I have neurophysio weekly and have an Occupational Therapist so I am very lucky in that respect.....coz again, regardless of what you or I am diagnosed with, we STILL need the help with sensory problems, mobility problems, inco problems, to name but a few.....

I would really look at changing your GP if they are not helping you with the care and assistance you need as by not getting the physio for example, this can be causing muscle weakness which can cause other problems further on down the road....Im disgusted however not at all surprised at your treatment.....

Anyway on a brighter note.....we are all here and will support eachother and get the positive promotion of CD and other mental health illnesses out there and who knows....even if we just change one persons view, its one less person to label us in a negative way isnt it!!!

JibbaJabba xxx
 
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