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conversion disorder

Has anybody here been diagnosed with conversion disorder...if so would love to hear from someone.....I have been diagnosed however hard to speak to anyone to understand it even physcs.

8 REPLIES 8

Re: conversion disorder

Hi max1,

Welcome to the forums! Off the top of my head I can't recall if members have mentioned that they have conversion disorder. @NikNik , have you come across any?

It sounds like it can be pretty isolating experience not having many people to relate to. I know that you mentioned that even psychs find it hard. Have you asked if they know any support groups? One option could be to get in contact with GROW, they run support groups for people affected by MH and may be able to point in you in the right direction. 

Another thing to consider is that although some people may not be going through exactly the same illness as you, there are many people who can relate to feeling unwell, and many members on this forum who are willing to listen, learn and empathise with your experiences. 

@Alessandra1992 @kristin @kato @Loopy @kenny66 @PeppiPatty  @BatGuano as consumers, can you offer any advice to our new member max1?

CB

Re: conversion disorder

Hi Max

 

I don't know anyone with conversion disorder although it was mentioned at a MH rehabilitation clinic I was attending as one of the group of lesser known disorders.

There are specialist websites that discuss this disorder in detail and one, particularly,  that has quite a number of people diagnosed with it discussing their experiences.

You have probably accessed these sites already.

From what I understand, conversion disorder is difficult to diagnose and treat. 

It took a long time for me to be diagnosed and treated but once I got on to a good regime of medication and psychotherapy, and I understood my MI things improved dramatically. Talking with others about how I was effected was also critical.

However I think that there are other MH disorders that would have similar challenges day to day and some of the strategies to deal with these might be useful for you to discuss here with others.

Were you diagnosed just recently?

 

Kenny

 

 

Re: conversion disorder

Thanks Kenny

Yes it has taken awhile to be diagnosed...finally diagnosed this year....challenge is due to lack of knowledge about disorder has seen incorrect meds given, treated poorly at emergency when going in with seizures,  the stress it has caused on my family and having two small children is very difficult.      I am sick more than I am well.  Living in regional area and just so desparate for help.   Feel like I am becoming a burden Smiley Sad(( 

Re: conversion disorder

@max1 wow that does sound like a challenging disorder.
I am not to sure how to give input but I understand what your difficulties would be my wife suffers from narcolepsy and cataplexy she looks perfectly healthy but is actually suffering from a major disability.
It is invisible to others and very difficult to detect and diagnose it took us 10years to finally get the diagnosis.
So it is sort of similar I think at one stage the mention of neurological disorders did come up but I cannot remember exactly.
The good thing with this forum is you can feel free to open up about your trials and tribulations to a group whomight not get it but are supportive nonetheless

Re: conversion disorder

Hi Max1

Living in a regional area is a big issue for medical services. I live out of town with a 50km round trip just to see my psych, which I have to take by bus because I cant drive.

I think regional areas suffer from a severe lack of medical expertise generally. Locally its pretty terrible, especially the GPs.  I found one good psych who is very switched on but there is very little choice.

I usually cart myself off to the public hospital first up which I like a lot. The visiting specialists I have found pretty good, and at least you are is a safe place. After a couple of visits they know your symptoms and treatment regime.

I am not sure if you are close to a PH but that's where I would go if you are feeling low. Otherwise there are a number of on line support services like lifeline which I have used when stranded without help.

It looks like there is a lot of ignorance about your disorder. Likewise up here I don't think anyone has even heard of Schizoaffective, so I take a print out with me on it along with a list of medications to give to the GP, the hospital and the chemist.

You might think about having a descriptive document about your disorder with you to give to any medico or the hospital who may not know about it, what medications you are on and your symptoms. 

I don't think people who love you think that any of us is a burden. There are challenges, but everyone has challenges MI or not.

I made friends locally with some fine understanding people, mostly MI themselves but they can be uplifting to speak to. This can be very helpful.

Do you have any mental health organisation/s in your town? There are a couple of organisations, like the mens shed for guys, who help deal with depression arising from a mental illness in an enclosed environment.

If you are completely isolated I would access on line support and engage with this forum which at least can give you an avenue to be listened to and be supported. This is what works for me.

Do you have a referring GP or specialist you like and trust? If so he should be able to get on to the hospital on your behalf to ensure you are treated appropriatly next time if you present at E and A.

Also I found after a couple of visits to the E and A at the public hospital, they had all my details on their data base with my disorder symptoms and medications.

 

Kenny

 

 

Re: conversion disorder

Great idea there Kenny, about educating chemist, GP and public hospital..
Are you finding @max1 that your diagnosis is readily understood..? Would Kenny's suggestion be worth trying?

Re: conversion disorder

Why do you believe the diagnosis?

To be frank,many patients with Medically Unexplained Symptoms have been wrongly labelled with Conversion Disorder or Somatisation Disorder purely due doctors being at a "wits end" regarding their symptoms and it being the easy thing to do because then the doctors know longer have to deal with the "difficult" patient.

You mentioned Seizures so I'm guessing you had an EEG which showed no abnormality so you then received the Conversion disorder diagnosis?
Did you get a copy of the EEG?
What sort of seizures do you have and when do they happen?Do you have any other symptoms?

You might want to read the below links and also regarding the Justina Pelletier case in US.
http://www.huffingtonpost.com/allen-frances/diagnostic-ethics-harms-v_b_4450653.html
http://www.bmj.com/content/346/bmj.f1580/rr/638352
http://www.diagnosticrights.org/current-debates/current-debates-page-3/


Re: conversion disorder

max1, cannot help you with your question, but if you vist the mayo clinic site it is very informative. I have downloaded a bit about it and it is a terribe affliction and my sympathy goes out to you, I actually feel helpless. I had never heard of it.

Kind regards

loopy.

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