My CD Story

[mcintyre]

Here's my experience with CD so far, just been reading some of the other stories that seem remarkably similar to my own...

I had been having strange "wobbles" when walking and a bit of stuttering for many years, dropped things occasionally but ignored it as nothing much to worry about.

My at the time fiancee told me several times I ought to go to the doctor but I just laughed it off.

In December 2005 her and me split up and then in January of 2006 I started collapsing, having seizures, trouble speaking, memory problems and walking problems worsened.

I went to see my GP who referred me to a neurologist and for an MRI scan of my brain.

The MRI scan showed something called Empty Sella which apparentlty is when the pituitary gland is damaged but I was told that's nothing to worry about. The neuro kept me on the neuro ward at Pinderfields hospital for a couple of weeks for investigation including another MRI of brain and spine, a lumbar puncture and physio as at the time I was unable to walk without crutches.

At the end of the 2 weeks I was told all scans etc were clear and diagnosed with conversion by the neuro on that basis. I was referred to a psychiatrist who spoke with me for 45 minutes and diagnosed me with depression as well as confirming the CD diagnosis and outlined a treatment plan which included intense psychotherapy, antidepressants and relaxation exercises. He also stated in his report that it was vital treatment was started asap as the prognosis was bad if not. He also stated that as I had been abused by my Father as a child this was most likely the root cause and mentioned something about PTSD being involved too.

That was almost 2 years ago abnd to date I'm still waiting on an referral to mental health services.

Today I use a wheelchair most of the time and the physical symptoms have never gone away even though I was told they should. I still don't believe the CD diagnosis and my GP and I both think that it may be MS, though there are no clicnical signs.

 

[mollycat]

A familar story

Hi again,

I just posted something similar to your last couple of paragraphs, i was also led to believe treatment must start asap otherwise the outcome may not be favourable. I am in total shock that your Mental health appointment has not been issued, that is truly neglect on their part, I guess it won't change anything for you but it must feel like you have been left alone with all this. Try asking your GP again or ringing the mental health services dept in your hospital, that is of course if you what the so called " help " they can offer.. as it seems it can be more stressful trying to get the help than not having any help, a real catch 22 situation.

I ditto most of your experiences as we all seem to; reading between the lines, whatever we have it is very similar in origin between us all to replicate similar symptoms - maybe we have all invented a brand new disorder between ourselves?? if we only go back 15 years MS; before the avent of MRI scanning was classed as a primarily mental health disorder as there was no way of finding out what was going on with a live brain, so we are pioneers in our expert subject - " WIERD " we have all used this word in our posts so maybe that's a good name - " wierd disease" or weird syndrome" or " wierd disorder "

I hope you are staying positve? I know it's tough but we have to to be able to cope and fight it, great news we are growing in number as a family and hopefully raising awareness in the process,

I know people pop in to the forum just looking !! or just browsing their own symptoms and trying to make sense of the " wierd " ( it's that word again ) things going on in their body's well welcome to all onlookers, participants and fellow possible sufferers! I hope the message gets out there that CD is not to be ashamed of in any way and lets talk about it - lets bring it out in the open and raise much needed awareness.

Thanks to all of you who have joined so far, it's a brave step, but hopefully a step worthwhile.

Good blessings to all

Mollycat

 

[mcintyre]

I have been pretty much left to my own devices yes, but I do try to stay positive.

I'm aware of the MS thing before MRI and CT scans were available - my partner has MS and it's basically because of my condition that we met via the MS Society website.

What really gets me sometimes is that she is able to walk normally, get on with life etc etc but gets hit by fatigue occasionally and the neuro and MS nurse etc fall over themselves to help her, give her treatments etc etc whereas I have absolutely no help at all, need to use a wheelchair for most of each day, can't speak at times, can't always control my hands/legs or head and struggle with memory problems as well as fatigue (I don't let on to my partner how much I do need to use my chair etc as she has her own problems to worry about - she thinks I only use it at work and at the supermarket).

I feel as though the only thing I have in my favour at the moment is that I am in receipt of DLA high rate mobility and low rate care. I used to have a great GP but when I moved in with my partner I was out of his practise area (by about 2 miles) and swo had to change GP.

I think part of the problem is that I still can't believe that my physical symptoms are caused by a mental illness - I'd like to believe it and look into treatment and stuff but I just can't.

 

[Annie]

I have just read your post and can recognise so many things that you say - I too was abused from the age of 8 and the docs say it is a big thing that goes towards their diagnosing CD. I have trouble believing my diagnosis however because my symptoms were so bad, I was assessed and went on a stroke ward for a month where I got the best rehabilitation from. I have tried to look into ways of finding out if it was CD but the psychiatric people tell me I need to accept it and in accepting it I will get better and also that I shouldn't worry about it but I do I get scared everytime I get a bad headache because that was how it started and also I have coeliac disease and I have since discovered that there are links between coeliac disease and neuro problems. Keep in touch it helps to talk.

 

[mcintyre]

Thanks for your reply. From my reading it seems that tgere are many linksbetween Conversion and various neuro problems and I do believe that one day this link will be realised and accepted by the medical community.

Until then I have been left to manage the best I can. All any of us can do I guess.