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conversion disorder plus real physical d/o

daisy2

daisy2

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Apr 8, 2008
Messages
7
Location
Alabama, USA
Hello

I have had CD for 30 years although it was only given that name about 5 years ago. I get temporarily paralyzed sometimes in response to certain situations, such as extreme unexpected fear or pain. I've got to admit it's pretty weird. Over the years have been to different neurologists and shrinks.

About 10 years ago, I developed difficulty writing with my right hand then pain in my hand and arm. Orthopedist was no help. Then the pain got excruciating and my left arm was in pain by then too. It was'nt the right pain pattern for carpal tunnel syndrome. I went to a hand specialist who said i had tennis elbow and golfer's elbow both and sent my to physical therapy and for an EMG.

The physical therapy made it worse and the EMG showed my nerves were fine--the doctor practically threw me out of his office when I went for follow-up. He did refer me to another dr to let her "sort it out" tho I had to pester his office to get my records sent over. The new dr was a rehab specialist and she treated me kindly. Tried some medicine (didn't work) and sent me to an occupational therapist to help me learn to live with problem. Alas, she had twins and stopped practicing medicine.

Then I went to a new neurologist who I'd read was a specialist for migraines. I was having severe migraines at the time. When he was taking my medical history, the topic of my temporary paralysis problem and my hand/arm pain came up as well as my new problem of RLS in my arms. (RLS is restless leg syndrome only mine was manifested in my arms.) He asked me did I realize how rare that was and how rare it would be for someone to have all these problems? Of course I said no. He was intrigued about my temporary paralysis problem and did some more tests that I'd never had before--only had EEGs before. I had never been able to voluntary make myself paralyzed, but he was able to induce an episode in his office.

He diagnosed me with conversion disorder. When he explained what it was, he asked if I had been sexually abused. I assured him I had not, but he said I might not remember it and it didn't have to have been my dad. He said he expected I would have left his office then b/c that was the typical reaction to the diagnosis of CD, but I didn't. I said I wanted to get to the bottom of it. Anyway, I looked up everything I could on conversion disorder and became fascinated with it. Wasn't sure I had it, because it sounded too wild. He did assure me that it was not under my conscious control--that I was not doing it intentionally.

He refered me to a shrink and said I needed intensive psychotherapy. So I went b/c I wanted these incidents to stop. Even tho they don't happen often, they can be very disruptive to my life and scary to everyone around me. So far, we haven't uncovered anything significant.

He did help with the migraines by prescribing wonderful medication.
Now here is the important part for those of you who have all those MS symptoms: remember all that pain I was having in my hand and arm. Well, I was also having weakness. To the point that my family was having to help me with grocery shopping, cooking, etc. We had pretty much decided it was all part of my conversion disorder personality and it was wearing thin with my husband.

But then the rehab dr who had had the twins started practicing again so I went to see her. When I mentioned the pain was also in my shoulder, she ordered an MRI of my cervical spine--thought I might have a pinced nerve. I was so used to having negative results from tests that I was astounded when she told me the MRI showed something. I have ACM I with a syrinx. Had never heard of it and she told me it is rare and it is not well understood by most doctors. After SEVEN years, I finally had a diagnosis! She told me I probably had this defect since birth--the defect being a part of my brain hanging down into the space just above my spinal cord and this caused cerebrospinal fluid to build up in sac (syrinx) in my spine and this presses on nerves in your spine. This is why the EMG showed my nerves where fine in my arm. I was in a daze at being defective. Looked it up on the internet and sure enough, it fit.

The moral of this story, ladies and gentlemen, is that a person can have conversion disorder AND a genuine physical problem at the same time. Now I'm not saying that you folks with the MS symptoms have conversion disorder, you might still have MS--look how long it took for me to find my diagnosis. But if you do have conversion disorder and you get new symptoms, don't always assume that everything is conversion disorder.

Thanks for "listening".


:grouphug:
 
M

mollycat

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Mar 25, 2008
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38
Location
Buckinghamshire
Hello there Daisy2 and :welcome: to our family :hug:

Thank you for your post, and your kindness towards us fellow CD ??? limboland sufferers - it means so much to hear from others who have been there and are open about sharing their stories, CD is a little understood or talked about disorder in the UK it seems, and this site has my full support for allowing us web space as the only one available in the UK thanks to the MH website and JJ for getting it up and running.

Your journey has been a long and tough one, I can gain from your post that at times it has seemed a constant battle with the symptoms, yourself and others, a journey we fellow CDers and all MH sufferers know too well. You did it, you got there in the end - well done you!! :hug: for searching for the truth in all of this and giving others like us hope!

I have mainly arm symptoms and the weakness, loss of feeling, and pain from time to time as you describe, I was also treated for carpal tunnel syndrome and tennis and golfers elbow, so it's a pattern i recognise in your post.

I found it interesting that your doc could replicate your temporary paralysis problem in his office, I am due my neuro psychiatric assessment in May so maybe he will try something similar for me - who knows, it will certainly help me understand it all, i really find it all very wierd indeed and have doubts all ways round. Also my GP said to me today that normally I would have been bouncing out of the office at the mention of CD ( that seems to be what they expect a person with CD to do ) but I am really hoping all this will help and want to know more and get the assessment asap, anything that may help i will willingly participate, so i am paying for it privately as the NHS wait is months and months and I would like some help / answers sooner rather than later, so credit card here i come...lol if it helps what the hell.

Also enlightening is your shoulder...this all started for me with severe shoulder pain, crawling sensations, and weakness a good few years ago, that has no spread to my arm and hand and now i have a bad tremor in right hand too, I have never had any EMG's but do have atrophy of the intrinsic hand muscles and forearm now but they don't seem interested as the cause is a mental issue and not organic.

The moral of the story - for you is a good outcome, I am so pleased you found the courage to go on and find your true diagnosis as well as your CD, I am so pleased you finally manged to get to the bottom of it all, it must have been a great relief, I do understand what you say about all symptoms NOT being conversion disorder but I have been to GP with different things and they simply say Ah well thats stress and conversion of the stress causing symptoms, so I don't think at the moment i will ever be taken seriously again, I live in hope of finding a Doc who treats me with respect and listens, I live in hope of finding out what is wrong, and most of all live in hope that whatever the diagnosis I can begin a road of recover, coping and most importantly for me, being believed. :(

Take good care and thank you for sharing your journey with us.

Mollycat x :grouphug:
 
F

fiona123

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Apr 8, 2008
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we do have to struggle

I think what shocks me with both of your stories is the way in which we have to fight when we least have the strength. It's almost ae is the doctors are irratated by symptoms that are beyond their understanding and dispute science and everything they believe in. The incident with the dr and suggstions of child abuse was inetersting.......a classic freudian reading...baring in mind freud was often wrong creating false anaysis of incidents in childhood.
 
M

mollycat

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I totally agree....

Yes, Freud was a bit "out there" with his theories and has been wrong repeatedly, but i feel the neuro's use theory when it suits them - but god help us if we use percentage and statistics or theory with them, I mean how dare we question them....lol

Yes, i totally agree with having to fight our hardest when suffering the most - at a time when support and understanding is needed we get thrown out of the ring and left to fend for ourselves, maybe that part of the treatment...

It has also been brought to my attention that symptoms that persist don't have a good prognosis and immediate treatment is necessary - well that has NOT happened with any of us CD ers here and although quoted in all the treatment options the reality is that if it's CD then you basically just have to get on with it.

The pattens of all our stories overlap considerably so I guess whatever we are suffering from it is one and the same.

Hope you are coping well today

Mollycat :hug:
 
M

mcintyre

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Yes, Freud was a bit "out there" with his theories and has been wrong repeatedly
Certainly was and has - since diagnosis back in '06 I have read a lot on Freud and pretty much everything I can find apart from his own work basically states that none of his theories ever had any basis in science and nor could his conclusions or ideas be proved. In most cases he has been proven to be completely wrong yet psychiatry still uses his work as it's cornerstone.

we get thrown out of the ring and left to fend for ourselves, maybe that part of the treatment...
Again after diagnosis I did some digging online and found some medical book or other that gave advice to medical practitioners on treating patients with CD (or hysteria) and it suggested that patients are to be told firmly that their symptoms have no physical basis and then left alone - no treatment or mobility aids are to be provided or suggested as this "encourages the patient to adopt the sick role".

Well excuse me but if it weren't for my wheelchair/crutches and stick I wouodn't be able to get on with life, go to work etc so sucks to that.

It has also been brought to my attention that symptoms that persist don't have a good prognosis and immediate treatment is necessary - well that has NOT happened with any of us CD ers here and although quoted in all the treatment options the reality is that if it's CD then you basically just have to get on with it.
It is fascinating how similar most of our experiences are now that we can start to see them coming together.

Most of what I've been able to find about CD suggests that symptoms disappear of their own accord within about 2 weeks. OK - so I'm now on over 2 years of pretty much constant symptoms, plus possibly years before diagnosis as well. How's that then? Might those of us that are not getting any treatment have some sort of claim for compensation in a neglect case perhaps, if it could be proven that had we been treated we would have recovered and therefore our disabilities have been caused by the failings of mentalhealth services? I think not.
 
daisy2

daisy2

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Location
Alabama, USA
Thanks to all who responded.

Have done alot of reading on abuse and CD and apparently lots of studies show there is something to it for many CD sufferers, but many had no abuse. When the neuro asked me about abuse, my first thought was all those people with false memory syndrome brought on by their shrinks.

After my ACM/syrinx was found, I took the results to the neuro to show him he missed the diagnosis. Instead of being the typical arrogant doctor, he was very humble and apologetic. He couldn't believe he missed it. At a later visit, he told me that because of me he had changed how he practiced medicine.

I'd like to send an "I told you so" letter to all those other doctors who treated me badly, but I haven't--don't think it would help them any. Most docs are not as open-minded as my neuro.

I'm so glad to be able to talk with others with who have gone through the same thing I have. I hope I will be able to help others along this difficult journey.:grouphug:
 
JIBBAJABBA

JIBBAJABBA

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Mar 4, 2008
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Hi Just posting this here again as was in the other foum before CD was implimented lol!!


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 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.



Regards

JibbaJabba xxx
 
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