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My daughter has cd - info please

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My daughter has cd - info please

Postby Fed Up With Doctors » Fri Jun 02, 2006 7:27 pm

Hi, my daughter (14) has been diagnosed with conversion disorder. It started with pseudo seizures, then paralysis of left arm, now paralysis of both legs, loss of vision in one eye, blurred vision in other. This started mid APril and has been spiralling out of control since then.

Does anyone have, or had, same type and combination of symptoms? Any recommendations on where and type of treatment? How long to recovery (part or whole)?

Your replies would really be appreciated
Sue
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Postby mcintyre » Tue Jun 06, 2006 6:57 am

Hi Sue, and it's good to hear from someone else in the UK....

I was recently diagnosed with CD as well after my doctor and neuro thinking at first that it was MS. Havign said that they now seem to be looking at the possibility of Epilepsy as I have been booked for an EEG towards the end of this month.

In my case I have been struggling for about 3 years with walking, this has gotten gradually worse to the point where I collapse quite frequently, walk with a stick for short distances and have a wheelchair which I keep in my car for when I need to go longer distances (more than a couple of hundred yards or so). I also have seizures occasionally and tend to drop things, silly things like knives and forks when eating etc.

I recently spent 2 weeks in hospital under care of my neuro after having a seizure (my first one) and then going paraplegic. I had physio visiting me every day in hospital to get me back on my feet again.

Have you heard of Fiona Whelpton at all?? She's an author and journalist who also has CD and has written a book about her experiences called The Cycle Path - it's a very interesting read. I have it as a PDF, if you'd like a copy drop me an email to either dan.mcintyre@northernfoods.com or v301gnk@orange.net and I'll bob it over to you.

The book is published by a company called Chipmunka who are aiming to become a voice for authors with mental illnesses and also have a forum and foundation - the MD and I have swapped emails regarding the setting up of a CD support group in the UK as there is absolutely nothing at the moment - even organisations like MIND have no info about CD which I find shocking.

If I can help any further please don't hesitate to get in touch.....

Dan xx
Dan McIntyre
"Those who say it is impossible should not interrupt those who are doing it"
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Re: My daughter has cd - info please

Postby nola » Sat Sep 23, 2006 2:31 pm

Fed Up With Doctors wrote:Hi, my daughter (14) has been diagnosed with conversion disorder. It started with pseudo seizures, then paralysis of left arm, now paralysis of both legs, loss of vision in one eye, blurred vision in other. This started mid APril and has been spiralling out of control since then.

Does anyone have, or had, same type and combination of symptoms? Any recommendations on where and type of treatment? How long to recovery (part or whole)?

Your replies would really be appreciated
Sue


hi sue,

i have been diagnosed with conversion disorder and have similar symptoms to your daughter. my whole body gets paralysed for about 2 weeks at a time, sometimes stopping my ability to swallow too. this has happened 9 times in 18 months. my left arm gets regularly affected and goes into a spasm as do my toes. i have constant ringing in my ears and some difficulty hearing which i hope doesnt develop into deafness. my sight so far is ok, apart from occasional double vision. i am going to be having cognitive behaioural therapy soon hopefully so we will see how that turns out. dont see it helping myself, but im now open to all options!
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Postby Fed Up With Doctors » Sat Sep 30, 2006 6:37 am

Thanks Nola
It is at least reassuring that my daughter is not alone in this and her symptoms are share by others - then there is hope that someone somewhere will find out how to help. My daughter had a period of about 6 weeks symptom free but is again back suffering from all four limbs in paralysis, pseudo seizures etc. We are in touch with mental health professionals but they seem to be taking the view that my daughter is controlling this (not a belief I share) and therefore have no sense of urgency in helping to get her out of it. Do let me know if cognitive behaviour therapy is successfull - I know you are sceptical but I'd bet you'd love to be proved wrong. Good luck. Sue
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Postby mcintyre » Mon Oct 02, 2006 12:52 pm

Hi Sue,

Unfortunately some medical "professionals" are not genned up about this condition as perhaps they could be and do see it as if the patient is in control and have been known to treat patients with some hostility as time wasters.

It might be worthwhile you getting some info about the condition and making them read it perhaps, if you feel strong enough in yourself to do that?

I too have pseudo seizures (although I have had one or two where I have bitten my tongue as well) in addition to paralysis down my left side and weakness etc etc. As for treamtent I have recently been started on anti depressants and am being referred to a mental health management team for psychotherapy.

I wish you all the best in getting your daughter taken seriously. Don't give up and fingers crossed she will get through this.
Dan McIntyre
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Postby nola » Fri Oct 06, 2006 1:45 pm

Fed Up With Doctors wrote: We are in touch with mental health professionals but they seem to be taking the view that my daughter is controlling this (not a belief I share) and therefore have no sense of urgency in helping to get her out of it. Do let me know if cognitive behaviour therapy is successfull - I know you are sceptical but I'd bet you'd love to be proved wrong. Good luck. Sue


i have been seeing a neuropsychiatrist for over a year now but before that, i had the same treatment as your daughter, with the doctors not believing i couldnt control it, to the point i began to believe i was faking it too. i felt like i was going crazy and i didnt know why i would put myself through such suffering. they even came in my hospital room while i was sleeping to see if i was 'putting it on' it took a while for them to believe me but they did in the end. its a struggle though, and i always worry people think im faking it . i will let you know what happens with the CBT x
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