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Another new diagnosis

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Another new diagnosis

Postby muppet » Wed Jun 28, 2006 6:10 am

Hi. Well am I glad I have found this site!!! So thought I would give my history of this too. Warning, it may take a while :-)

December 2004 I was sleeping all the time. I would come home from work and go to bed, get up in the morning for work etc. Hubby took me to the doctor who said to go to hospital for a CT scan. As I was at the hospital filling out the form, my writing went all wobbly and off the page. They admitted me, where for the first four days I had no idea where I was and double vision. When I got out of bed I had no balance. Vision and mind cleared but not the balance. 8 days in hospital, with MRI done, blood tests galore, lumberpuncture, and everything came back clear. I came home and after about a month I was up on crutches and back at work.

October 2005, I had been progressing and going for walks without my crutches, with hubby bringing the wheelchair for when I got tired. I went for a "huge"walk of about 300m. The next morning I got up for work and collapsed. There goes my legs again. Back to square one. Readmitted to hospital, but of course they can't find anything wrong. Came back home and this time it took about 7 months to get back on crutches. In the meantime I lost my job (was a temp contract) and gained a new job. I had also been having follow ups with doc at hospital who after a 2nd MRI had mentioned conversion disorder. I was sent to a psychiatrist who I saw twice and then said a psychologist would be better to see me, when I was ready to do so.

So I started this new job and after four weeks of full on work, I got the double vision, cross-eyed blurry eyes again. My hubby picked me up and took me to A & E who said, yes conversion disorder. Once again, my legs have no idea what they are doing, if I try to walk they cross over and I fall over. Went back to GP who thought I had signs of MS, sometimes don't pick up on scan straight away. Went to a second neurologist who said yes it is conversion disorder, definitely not MS (thankful for that).

Now this was only last week now, I am off work again, but this could be where things may be important for some of you. My neurologist said that people with this disorder don't see a psychiatrist because they deal with specific problems (bipolar, shizophrenia etc), where as conversion is more intricate dealing of the mind, which a psychologist is more appropriate to deal with. He has told me that things can be hidden so deep I don't even know they are there. This is where I get a bit tripped up, yes I have had a stressful past, who hasn't. I am probably one of the most easy-going people around, and I will not let this beat me either. But I still have a hard time understanding why all these symptoms didn't come along at the stressful time in my life, not 20-30 years later!!

Well, in the short run of it, this is my 3rd episode in 18 months. Right now, I am off work because I have no short term memory. I have no idea what day of the week it is, don't remember seeing doctors this time around, and forget not to get out of my chair. I can't drive and hubby has to stay with me all the time. We are currently waiting to find a psychologist to visit to see what he says, but neurologist says this can be a quick fix with the right person. So here is hoping.

So I have joined up to this site, and hope to be in contact with people who are going through similar things as me. Even though it is an awful thing to be dealing with, I am very thankful that I am not dying, I know there are other people worse off than this, and that my neurologist has said yes this is treatable. Unfortunately I am an impatient person, and the quick fix the doc says, I keep thinking I will be back at work tomorrow..... but right now tomorrow never seems to come. I would be really interested in responses from people and have created this site onto my favourites. I am 39, female and in New Zealand. I cannot find anything on the web pages for support in New Zealand.

Sorry to go on and on, I have finished now.
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Postby muppet » Wed Jun 28, 2006 7:09 am

Also could somebody please reply if they have had treatment already, and how it has worked for them. Are they "better"?
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Postby Pinkofficelady » Wed Jun 28, 2006 9:18 pm

Hi,
I went along to the doctors today and they said they think ive ot Cd.

I can so relate to your story of not being able to stand up I have a bad nee so we always thought it was my nee hat woud not support me.

I put wooden flooring in down stairs and knocked a big cupboard down in the hall for when I end up in a wheel chair and so I can spin it around. I am also femal 39 with Hubby and live in the Uk. Hubby luckally he plans to work from home. but he always has to look after me. get me to the loo when my legs don't work and I am house bound most days.

I have been put on the waiting list for a 5 days video and brain waves detection in the hospital. a 3 month wating list then I will know for sure though they said they are 99% sure already.

I agree with the cure not being just a pil and not today.Its hard to accept that its so underlying that we have not found it before.

I hope your short ter memory comes back lots of memory dust sprinkeled your way.

Ta Belinda
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Postby muppet » Thu Jun 29, 2006 8:07 am

Hi Belinda. Thank you very much for replying. I am so glad there are other people you can talk to about this. I am at present waiting to go back to my GP who will forward me on to the psychologist. Just very weird there is no definite diagnosis of this, he doesn't think I have it, but the neurologist does. Will keep updates in here anyway, is a very good site.
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Postby Pinkofficelady » Thu Jun 29, 2006 12:34 pm

Hi again

Ive found a few sites from reading other peoples postings on hear. and ive found it very usfull, i can see why they think i have this CD. My heas is wheres the cure though every one talks about the sysmtoms and the La Belle syndrome which i don't really get. I read about if the patient feels thier is a secondary gain from doing these things they will do it more. I can't see any gain from being this way. one day out and about next can't get out of bed. Also so many patients don't go for the psycatrist help and the condition gets worse. also as soon as you relise and understand that you have got it and that you can see it the symtoms get better. But you have to be carefull how you tell the patient as if thier not ready to here it then it will get worse. oh how confusing im into what do I do now.
Hope your having a good day. I went shopping for an hour the morning and then got back and could not make a dission what was for lunch. It was all about making a desision for others ie hubby. I don't ususly have this situation.
bye for now Belinda
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Postby muppet » Thu Jun 29, 2006 10:26 pm

Yes, it is very confusing. I had just started a new job this last month, and for the first 5 weeks we were doing long hours, 7-5, and I did 4 weeks of that then got sick again. At the moment I am still off work, but when I am in my wheelchair I can start to push myself with my legs again but my short term memory is still terrible. Still never know what day it is when I get up. When I start back to work, I will be on 20hours per week so that will be cool. That will be just over 3 days too. Go back to my GP next week to see what he says, but I hated how yes, you would get so much better and improve and then bam, you are back to square one of having to be looked after. I am a really independent person, and keep telling hubby I can do things, but then fall over or forget and that is the end of that. Do you have children? We don't which I suppose is a help, he only has me to look after.... and the cat lol. I am a bit nervous to go see the psychologist but if it is gonna work, we try anything huh. Catch ya later. Lisa
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slow and steady and treatments

Postby alycorn » Sat Dec 09, 2006 7:19 pm

I've been dealing with the conversion disorder(diagnosed) for about 4 years now. I'm unusual in that my symptoms are relatively consistent(as in constantly have symptoms, but the severity varies), so far I've had to change careers, and go on unemployment and disability and do a lot of exploration on treatment. I do think there is hope though! I know that my symptoms keep changing, which my neurologist says is a good sign. Psychologist is the right path - you just have to find somebody who is good who will help you dig down. I've been dealing with depression most of my life so I'm very used to psychologists. Look at when you have symptoms and see if you can find any kind of pattern, even if its subtle. Also remember, conversion disorder is your body's attempt to protect you from something that it thinks is scarier than your conversion symptoms. With the particular symptoms I have, I regularly see a chiropracter and a massage therapist to manage my muscular problems(pulled and misaligned because of unusual or overly frequent movements). I've also heard and somewhat experienced that biofeedback can be useful, at least in some cases. can be hard to get insurance to pay for it, and hard to find the right clinician, but could be worth it, especially when its completely disabling. I've been put on antidepressants(apparently a very common treatment for conversion disorder), anticonvulsants(very BAD idea as far as I'm concerned...the side effects just aren't worth it), mood stabilizers(not really useful or helpful imho)...the only thing that has seemed to help me has been clonozopam, which is an anti-anxiety medication. Whenever my symptoms get bad, I get put on that for a while. It does have the side effect of fatigue(and you definitly don't want to get pregnant while taking it), but in low doses it doesn't make you too tired. But my understanding is that the only real cure is psychotherapy, and everything else done is just padding to keep the symptoms from being more damaging. Find a good psychologist(and apparently certain fields of psychology are better), and that will be your main help in getting better!
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Postby muppet » Sat Dec 09, 2006 7:40 pm

Thank you so much for that info too. At the moment I am going to counselling. I have been to see a neuro-psychologist who says to come back in a year if not better and he will put me on anti-depressants. I dislocated my knee a few weeks ago so that set me back a bit but my physio said he has had a lot to do with conversion disorder when he was in UK. He says he sees a lot of cases of it, yet I'm the first my GP has seen and he won't put me on anti-depressants yet. One thing I found weird the physio said was even though I'm not depressed, euphoria can be classed as a sign of depression. To me that means everyone must be depressed. So not sure there. But he sent me some useful links anyway. But it is good to know there are other people out there. Because I have muscles in my legs and can use them in my chair people look at you funny as if to say whát's wrong with her. I just ignore them lol. Thanks alot for replying. I am coming up 2 years now and can't drive and have stopped work. I get so bored during the day lol but counselling is giving me homework etc.
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Postby alycorn » Sun Dec 10, 2006 2:14 am

oh, I've gotten so used to being stared at. Like I said, I'm not disabled enough to not do stuff, so...I just keep going. But to get up to my therapist I have to either walk a mile to the train station or(usually) get a ride from my fiance(I refuse to prevent him from working/studying just for my convienence), then ride on the train for an hour and 20 minutes or so(if it runs on time, which it usually doesn't), get out in Manhatten, walk a couple blocks to the subway I need to catch, buy my ticket individually(wait in line and show my medicare card to get half fare), catch the subway, and walk a couple blocks to his office. On a good day, I can make it to the subway without having a major episode(then I sit on the subway rocking back and forth while everybody tries hard to ignore me), but more often I get to some point in the train ride, and start shaking. The conductors know me pretty well at this point, so they don't hassle me, and some of them actually look out for me, but other people on the train can be incredible.
I need to take up four seats on the train, two sets facing one another, and sometimes have to search most of the train to get that - if I don't sit like that and do have a twitching episode, I slam my head into the seat in front of me. As it is, what normally happens is anything from slowly rocking back and forth(so people wonder if I have autism or something) to slamming the trunk of my body into my legs. The main thing I've found that helps me on the train is to talk to somebody on the phone, because I get distracted enough by the conversation that my body doesn't go nuts. But then people on the train don't see me twitch and think that I'm being rude by talking on the phone. I actually ended up in a screaming fight with a woman on the train once, because she and the man she was traveling with hassled me about using my phone, which got me so upset that I was twitching too severely to get the conductor to say something(they've mostly learned that sometimes I have muscle jerks for no apparent reason, so don't ask me if I'm okay, try to stop me, call for paramedics, etc), and when I did get him, they lied about what I'd been doing, and he asked them to leave me alone. The woman stared at me the whole rest of the ride. I ended up standing up and telling her it was rude to stare and she started to yell at me about how I had problems and needed to see a therapist and I said I was on my way to see mine, and it digressed from there. The conductor threatened to call the police on her if she didn't move to another car,and I spent the rest of the ride crying. But hey, I managed to express emotions, so that means I'm getting better...right? *sigh*
Since you've got time, do some research online - I know I've also had relaxation excercises suggested to me - either breathing excercises or yoga or tai chi. They've all been too hard for me to do(any attempt to relax tends to make my symptoms worse). I have found that distraction helps me a lot though. I figure out things to do, keep my mind occupied, and do one thing after another, just keep trying stuff.
My suggestion is that with your therapist focus on the emotional probems that might have caused the conversion disorder, think about patterns and things like that. Once you've done as much of that as you can take, think about what you can do for yourself to make yourself better. Since your legs aren't the actual problem, work out how you can get around not using them. Also make sure nothing's done to atrophy the muscles or anything - my main problem isn't the muscle jerks themselves, its the side effects from them. Pulled muscles, headaches, things like that. So on bad days/weeks, I'm taking a lot of advil, but I have a lot of good weeks too. I also found that preparing myself for work was the best distraction I could find. I had something to work for, and that's what I did, as much as I could, and I took breaks, 'twitch breaks' when I needed to.
I'm now working one day a week and starting a business and spending a lot of time on my therapy. I've been continually told to try to live my life as normally as possible and try to keep from letting the conversion disorder control my life. My attitude is that I have to plan for it, work around it, and just keep going. I refuse to let my body stop me from doing what I want. People with physical disabilities figure out how to adapt, and that's what I'm doing, while telling myself that its all things that will eventually not be needed.
I at this point am feeling a strong desire to help people who are trapped in their disabilities, and am hoping that I'll be able to do some of my work towards that purpose. When I get up a bit more energy, I also might try to raise some sort of protest to improve the public transportation in my area. It is relatively easy(if long) to get to and from NYC, but local transportation is very difficult to work with. I've been on disability and low income for so long that I refuse to take cabs unless absolutely necessary(ironic, as my fiance has been working as a cabbie the last few years), and have been constantly struggling to figure out how I can make the public transportation system get me to and from all the appointments and such that I need to go to.
My main advice is to constantly push yourself a little bit, never let yourself get complacent in the illness. What my neurologist has told me is that every change is a good change, because its breaking the thought patterns that cause the conversion symptoms. I was a bit upset when it got to the point where I told him I was so depressed I was contemplating suicide on occassion, and he told me 'good, you're feeling something strongly'. But I trust him, and am just doing my best to conquer whatever gets in my way.
Right now, I've hit on a period of insomnia, despite sleeping pills, and an associated disinterest in eating. I'm not sure why this is happening, but I'm sure I'll pull through it.
The other thing to be aware of is that one of the big symptoms of conversion disorder is 'la belle indifference', which is a lack of concern over the severity of the symptoms. ie, you are less concerned over your inability to walk than somebody who had suffered from, say, a stroke that suddenly prevented them from walking. I've seen signs of that in myself early on - I know my symptoms are a lot scarier to people watching than they used to be to me. Keep busy and keep looking for help! Too many people are unaware of the condition, and/or unaware of treatments, and you're the best advocate you have. Seriously look into antidepressants, because even if you're not feeling depressed now, you'll hit that point, and its good to have a cushion in place(fyi it normally takes several weeks for an antidepressant to be fully effective, and a variable amount of time for it to leave your system/cease to be effective).
dealing with this illness is hard, because the explaination of 'its all in your head' is so right and so horribly wrong at the same time. You can't think yourself well, but you can explore the issues enough to get your subconcious to stop trying to defend you from your feelings. The process is painful - physically and mentally - but I think and hope that I'm a stronger person for it.

Alison
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Postby mcintyre » Tue Dec 19, 2006 9:30 pm

Alycorn - you sound like a very strong person who has come to terms with CD.

I'm still coming to terms with mine, having had the possibility of MS ruled out recently.

Like yourself I have symptoms constantly and am using a wheelchair pretty much all the time now as my legs (left leg in particular) are almost constantly numb and jelly-like. I can manage short (and I do mean short - say about 10 yrds) walks with my crutches but afterwards the pain gets to me and/or I fall over.

I did start treatment with anti-d's but took myself off them as they were making me worse. I haven't seen a therapist or anything like that yet although my GP says I've been referred to a "mental health management team" and has said I should be fully cureable. Thing is though I've been having problems for the past 3 years and really can't imagine anything changing anytime soon.

Plus as we get closer to xmas I am finding I'm feeling quite depressed now as I live on my own and will be spending xmas alone as all my friends and family are doing their own things with their families etc etc. It's not a pleasant prospect. Stil I've got my DVDs and plan to have sausage egg chips and beans for my xmas dinner lol so cant be all bad eh.

All the best to you all.

Dan xx
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"Those who say it is impossible should not interrupt those who are doing it"
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