Oh Well!

Its been a bit of a mixed bag over the last few days. My ptosis is still not resolving and my facial weakness is becomming more pronounced. Ive spent quite a bit of time on oxygen and my legs are definately weaker. My neck is also playing up and I'm finding it difficult to keep my head up. Ive tried using the collar which my sister has loaned me but for some reason its pressing on my windpipe and making me feel quite uncomfortable. So no real change in my condition.

I spoke to C at Oxford, a lovely lady. I rang and left a message on Monday and within 24 hours she had got back to me. She has given me a plan of action regarding my admission and confirming my bed. I now know who I need to call on Sunday evening and if that doesn't work I'm to call Monday morning and I'm not to set off until the bed is confirmed. Shes also told me what the planned activities are regarding my stay. She also told me if I have any problems off the mestinon like my breathing goes haywire I'm to take it and not worry.

We had a good laugh also about how notoriously difficult it is to get any blood from me! She's so proud of herself that she got it first time last time I saw her. Most nurses who regularly take blood take at least two attempts to get a vein. The national blood service asked me to no longer darken their door years ago after taking 45mins to locate a vein only for it to clamp up after 100mls! (did the blood donations before I was sick). The national blood service take blood all day every day 7 days a week so I must be difficult! The most attempts to get a vein was six by a student Dr. It doesn't hurt me when they do it, I just dont like them digging around inside my arm with a needle when they've got it in the wrong place! CG suggested we tattoo a cross above a spot that's known to yeild!

Ive also been sent paperwork today to renew my ESA, they actually only pay my national insurance, I don't qualify for any benefit from them due to my medical pension. My condition has actually worsened so it should be fine but you never know, I may need to go and have a medical. I have until the start of April to complete it so I am waiting to see what the hospital admission reveals before completing it.

Laughed my head off yesterday and I mean to the point of tears! All because my husband actually screamed whilst playing Alien v Predator on the PS3. The reason he screamed was because an alien jumped out on him. He was truly terrified. I did try and point out that it wasn't actually real but that didn't go well!

I follow another blog called sleeptalkin man, it is the funniest thing on the internet. However if you don't like swearing don't read it! This guy called Adam talks in his sleep and his wife records it and puts it on the internet. Tears run down my face when I read it! It makes me laugh so much and brightens up my day every day. So if you need a laugh take a look!

Slow Decline.....

I had a wonderful day yesterday. I spent time with my lovely 5 and a bit month old nephew and my parents. He's pretty much on the go all the time and you really do need eyes in the back of your head!

Last time he was here a few weeks ago, I held him and played with him for a couple of hours. He loves it when you sing "row, row the boat" and you have to rock him in time with the music and also "patter cake patter cake" is also a firm favourite. Unfortunately this time it was all too much for me. He's only put on a 1lb (roughly) since his last visit, but I didn't feel safe holding him. My arms were shaking and I couldn't concentrate. It made me realise how sick I have become in only a few short weeks. Thats the problem with this illness it creeps up on you and by stealth slowly removes different activities that previously you could do.

By the time my visitors left (and I was sorry to see them go) I was pretty much stranded on the sofa for several hours. All I could do was lie there and watch a film and wait until my body had recovered enough for me to be able to get to the toilet (my porta potty in the kitchen) My parents left before 4pm and I was unable to move until about 7pm.

I no longer panic when things are like this. I used to panic constantly when my body betrayed me in this way. I have come to the conclusion if I have to wet myself because I can't get to the bathroom its no big deal. The suite is leather and my clothes can be washed. Its not nice but I'm not proud.I can take the chance and try and get to the kitchen, but its a hard floor out there to get stranded on, so I was better just waiting it out.

Today hasn't been awful but its not been good either. My ptosis is failing to resolve even though I have increased the mestinon to 75mg every 4 hours. I read a site today for neuro opthalmologists, it was to do with checking for bilateral ptosis, because unless you check it can be easily missed. You may think that's a strange thing to say - but I missed it and its happening to me. I always really consider myself to be suffering from unilateral (one side) ptosis, when in fact I discovered today its bilateral(both sides). Don't get me wrong there are wonderful occasions when both my eyes shut! Oh the endless hours of fun this provides!

This type of bilateral ptosis is very sneaky and probably only a neuro opthalmologist would spot it. The test is very simple, I performed it by looking into a mirror. Firstly you cover up the eye with the obvious ptosis, then you close the "good" eye and rest it for 20/30 seconds. Then whilst covering the eye with ptosis, you open the "good" eye. The good eye opened fully and then slowly the eyelid began to droop and ended up in a position where it was covering over half my pupil. Hence bilateral ptosis! Not unilateral as previously thought. When the eye with the ptosis was covered the muscles in my forehead above the "good" eye relaxed letting it fall into its natural position. When I have bad ptosis my left side of my forhead fights a valient battle in trying to raise both eye brows to get my right eye to open. So on the left side I look like I've had a shock or a facelift and on the right side I look like I've had a stroke.

Just another of my party tricks that I have taught myself! Along with placing an ice pack above my right eye to cool the neuro muscular junction, this allows my right eye to open and the eyebrow to go back to its normal position.

Pain.....

Well the shopping was delivered but I didn't unpack it. Unfortunately just a few hours after I posted that blog, I had to call my husband and get him to come home from work.

I had woken a few times in the night with backache, right between my shoulder blades. Each time I woke up I shifted positions. I still had it in the morning when I came downstairs but then I started getting pain underneath my ribs on the right hand side. It developed really quickly and then I started being sick. It was awful I couldn't get comfortable. I could only lie on my left side, it was agony if I lay on my back. My husband called the local surgery and the duty Dr came out to see me. As the pain was in a band the Dr said it could be shingles starting up or it could be my gall bladder. (Its the second attack of pain I've had in the last 6 months that could be my gall bladder. Its been scanned and has drawn a blank!). She gave me a perscription for some codeine and told me to call the surgery if I developed the shingels rash or the pain got worse.

Thankfully the pain settled over a few hours. Im still tender and feeling very tired, but I haven't taken any pain killers today.

At 930am this morning there was a knock at the door and the district nurse was there. Dr Y my Gp had seen that the duty Dr had been called out and sent the nurse around to do some bloods, to see if its my gall bladder. I'm actually very impressed with that Dr Y.

So now I wait and see if anything shows up. It didn't last time but you never know with me and my weird presentation of illnesses!

Hospital Admission

I received my hospital admission papers today. I have to be at the ward for 1130am and ring the ward at 830am to confirm they have a bed available for me. The problem is that I live 3 -4 hours drive away from the hospital and will need to set off at 7am. I have contacted the hospital today to explain the issue, because my mum who is coming with me has to book a hotel room on top of having to leave before the stated 830am phone call. I understand that they can't confirm bed space until that day, but when someone is travelling the kind of distance we are, their approach should be more flexible.

Waiting for the shopping to be delivered today. I try and do the shopping online to save my husband having to do it. The only problem with this is actually having the ability to put it away! I have developed a system where Frozen and chilled get put away first. Then I rest for an hour or so and put the rest away in stages. It can be a bit of a nightmare and it has been known to reduce me to tears on occasion. Other than that there are no exciting plans today.

Feeling Better

Just thought I would let you know that I am feeling mentally a lot better today. Yesterday I felt very low and utterly without hope. Today I feel stronger. My MG symptoms are just as bad as they were yesterday, but I can live with them today.

I have ptosis and double vision again. My mouth is drooping on both sides and I'm struggling to close my mouth. Mestinon is not relieving these symptoms, but I can deal with it today.

Luckily I have the support of people on the forums, friends and family. I feel sorry for those who do not have such support.

Bad times

Sorry.....I really haven't been on here as much as I want to. Thank you to those of you who have been following my journey.

I'm really struggling at the moment. I haven't been well since Friday last week, my right eye has been shut pretty much continously. (For those of you who think this is no big deal tape your eye shut for 24 hours and see what its like. I think you will probably manage an hour before you decide you have had enough).I'm suffering with double vision as well. I'm very weak and any movement is sending my heart racing. Being on my feet is causing me to feel like I'm going to pass out.I've been taking the mestinon but my eye refuses to budge. If I up the dose, I feel like its too much and my body shakes like crazy. My right eye lid looks bruised. I'm at the end of my tether with feeling this way.

I don't think I'm depressed, I have none of my normal signs well pre undiagnosed MG signs, like sleeping in the day or waking ridiculuosly early or crying all the time. I don't want to withdraw from people and the thought of leaving the house doesn't fill me with dread. Its just a low mood, which I always get when I have a flare up, like now.

I'm just seriously fed up with not being able to do the things I used to. Just simple things like hoovering the stairs or changing the beds. Sometimes its more adventurous things like driving or taking the dogs out for a walk. I feel so trapped in this utterly useless body. I feel fine but when I go to do something it betrays me.

I will be completely honest some times I do think it would be easier if my life ceased.I wouldn't have to face this torture, my husband wouldn't have to worry about me all the time and could get on with a normal life. My parents wouldn't have to worry about me from one day to the next.


That solution would be easy for me, but not those around me. It would have a bigger impact on their lives than I care to imagine. It would ruin their lives. I care too much about them to hurt them in that way. Plus I'm a coward and couldn't do something that would hurt.

I have to say just because I think about it doesn't mean I'm suicidal. It doesn't consume my thoughts every minute of everyday. These thoughts come when I am bad like this, because without treatment I can't see things ever getting better. I don't want to spend the next 30-40 years living like this, a half life. The thought of it fills me with dread. So I do what I always do, limit myself to one days pity party and move on.

I think days and thoughts like this are pretty normal when you are suffering from a chronic illness, its just not many people care to admit they happen. People want you to stoic and cheerful in the face of adversity, but they've not walked a mile in your shoes. How can they judge without the experience of it? There is a pressure on those of us who live like this to continually pretend that we are ok, we even lie to other people that have the illness to say we are fine. Its just part of chronic illness that you don't talk about it. You also worry that people will get bored if they ask you how are you? and your constant reply is crappy. You worry that this perceived negativity will push them away. So you dare not admit that ideally you would like to curl up in a ball in a darkened room and wait to get better. People dont understand that.

Tomorrow I will probably wake up and feel better about everything, I may still have ptosis and double vision, but my mood may have lifted. If it hasn't I will distract myself and get myself out of it.

I have a date!

Oxford rang yesterday to inform me that they want me to come up on the 8th March for my hospital stay. So something different to look forward to and it will also help me give up the fags as no one will be there to wheel me out of the hospital grounds so that I can indulge in my filthy habit!

I'm absolutely terrified if truth be told. Its certainly not my idea of fun it is a necessary evil and thats the only way to look at it.

Hubby is concerned that whilst I'm gone he may fall off the dieting wagon. He gets very stressed when I'm in hospital and generally spends the day eating and smoking. He's just won slimmer of the week again at his works slimming club, losing 10lb in two weeks. So he has a lot to lose in many ways if he falls off the wagon in my absence. He is already joking with his colleagues if he wins again next week he should get to keep the trophy - like with the world cup!

In preparation for my upcoming hospital stay I have done the truly british thing and treated myself to some new knickers! I adore Marks and Spencers Cotton briefs so have ordered 10 pairs. Along with some new secret support vests. Although I have a somewhat ample bust I can not no matter how hard I try get on with bras. In the summer I wear sloggi Bra tops or go "commando". In the winter I wear my secret support vests. So much easier, especially now my fingers rarely do as they are told and wouldn't manage a bra clasp.

I now just need to drag out my PJ's and get them washed and ironed. My hospital bag is pretty much always on stand by as last year I just had too many trips to hospital. I'm going to speak to mother and see if she can get me some cheap night shirts from primark as well just incase they decide to do a Plasma Exchange whilst I am there. I will need the night shirts as basically a cannula is inserted into your groin for several days, so Pj's are out.

I have been stocking up on things to do whilst in hospital. I have a word puzzle book and I have decided I would like to sort out my recipe book and transcribe all the recipes into a bigger better book, that isn't covered in stains from where it has been repeatedly consulted whilst I am cooking. I need to find some good books as well to keep me occupied. I also love listening to the radio, so I will be taking a small digital radio with me so I can continue listening to Radio 7 during my stay.

Any others suggestions to help me while away the hours would be gratefully recieved! I will be keeping a diary whilst away so I can update my blog when I return.

Sorry ......does it have to be the hardest word?

Ive talked about conversion disorder and the like, but I was just wondering if anyone out there had ever received an apology from a Doctor due a mistake that they made? Why does sorry seem to be the hardest word in the medical world?

My medical history is littered with mistakes that the medical profession have made. The first when I was 2 and a half years old and I suffered from an intersusception (bowel telscopes back on itself). I was outside the classical age group for this condition, so it was ignored despite the fact I had all the symptoms. For ten days I was in agony as my bowel tried to move. My mum took me to the Drs everyday for ten days, she took samples of my faeces, which looked like redcurrant jelly ( a classic symptom) to be told by her GP that she was a neurotic mother and that there was nothing wrong with me. It took my fathers threat of physical violence towards the Dr if we didn't get a referral to the hospital he would throw the GP through the front windows of his surgery. The GP reluctantly sent me to hospital. We were new to the area and my parents didn't own a car so we went by bus. I was diagnosed with the condition, and one of my earliest memories is having a barium enema, so it must have been a bit traumatic! The drs at the hospital informed my parents that due to the length of time this had gone on my chances of actually making it through the operation were less than 50%. Did the GP apologise to my parents for his error....... no he blacklisted us and made it very difficult for us to get a GP.

Would we have accepted his apology? Probably yes if he had admitted that he had made a mistake. But it wasn't just an apology about the misdiagnosis that was needed, but an apology for not listening to my mother and calling her neurotic. I'm sure my father would have said sorry about his threat of physical violence.

For around 20 years after this operation I suffered with pains in my stomach, that were explained away on numerous occasions as grumbling appendix. In 1998 the pains got so bad that I saw my GP and explained everytime I ate or drank I was in agony for hours. It was the sort of pain that left you light headed. He diagnosed irritable bowel. It went on for 6 months and I asked for a referral to hospital privately as he refused to do it on the NHS. Several days later I collapsed and was taken to hospital. I had bowel adhesions and had to have major surgery. Did my GP say I'm sorry Ive messed up I should have listened and investigated this? No I had no apology, he never even mentioned the surgery.

In 2001 I came down with food poisoning, Salmonella to be exact. Part of my job role at the time was to train people in food safety. As part of the course we covered the symptoms of the different food poisoning bugs. I had all the symptoms, so took myself off to the Drs. I didn't see my GP I saw the duty Dr. He told me I didn't have food poisoning. I demanded he tested a stool sample, he told me if I was still ill on the Monday (it was a Friday) to do a sample. I did the sample and a few days later I was called and told I had salmonella. Did the duty dr ring me and say, you were right and I'm sorry..........? No he didn't.

I would have happily accepted an apology from the Dr's in 1998 and 2001. It would have restored my faith in them and shown that they had admitted to themselves that mistakes had been made. By ignoring the mistakes it seems that they are not willing to learn from them and thus endangering future patients. People from all walks of life make mistakes, but the mistakes that Drs make have far reaching ramifications.

The NHS has received a report telling them that they must start to be honest and open with patients when mistakes have been made. The reason why is because in the long run it will cost the NHS less money, patients who have been told that a Dr has made a mistake and receives an apology is less likely to take legal action against them. My concern about them being open and honest is - what if this is all just lip service and the Drs walk away and continue as they did before? I understand that Drs are human and make errors. But is it an error when they don't listen to a patient or investigate their complaint? To me thats just bad practice.

For example 1998 - My GP didn't examine me, ask me about my diet, do blood tests. He did absolutely nothing. I repeatedly went back to him for over 6 months - at any point he could have decided that this needed further investigation, but he didn't I had to ask for a private referral as I couldn't continue with the pain that I was in. All he did throughout those six months was to prescribe me antispasmodics and pain relief. None of which worked.

So why is sorry the hardest word? When it could make the Dr patient relationship so much better?

I have had an apology from Dr Y this year. I had a kidney infection which landed me in hospital in August 2009. From May 2009 I was having kidney infections that appeared to resolve and then within weeks return. I ended up having IV antibiotics. The next time I saw Dr Y, he said I'm really sorry that you ended up in hospital and it was a heart felt apology. I told him that he had nothing to apologise for, this wasn't anyones fault and it was just one of those things. I have a history of kidney infections and I had been treated with antibiotics which in normal circumstances would have cleared it. Dr Y obviously felt that he should have done more, I just couldn't see what more he could have done. I still appreciated the apology. Dr Y and I may lock horns over what is wrong with me on the MG front. But in the majority of all the other aspects of my care he is absolutely fine. He takes the time to listen and appreciates my suggestions.

Sorry really doesn't have to be the hardest word and by learning from our mistakes it can only make us better people.

And yes I'm still waiting.....

Its now been a week since Oxford contacted me and I am still yet to hear from them in regard to my admission for tests. I was hoping that I would go in March but thinking about it, it will probably be April due to the financial year starting and new budgets etc.

I'm also waiting to hear from Dr Y regarding my request for a referral to London to see the pulmanologist there. Why does everything have to take such a long time? My breathing has been an issue again lately and I have had a couple of days where I have had to use the oxygen to see me through.

I'm really tired today. Hubby had some friends around to watch the superbowl and my god they were noisey. We did warn the neighbours that we had people coming over, the walls on the houses seem no thicker than paper sometimes! Everyone is still alive after eating my chicken curry so I'm happy about that.

Feeling sad today as it is exactly a year since I saw these guys. Yesterday I got a glimpse into normal life, lost the anxiety that seems to be constant at the moment. I lost the anxiety because I could live in the moment rather than have too much time on my hands worrying about the future and punishing myself for actions in the past. Nine hours alone everyday with very little human contact will do that to you. I hate it the fact that every moment seems to be clouded by this anxiety, over the most stupid things. Most of the time I can talk myself out of it or distract myself. But with so much time on my hands it can be hard to do.

I sat here again this morning and thought is this all my life is going to be until I die? I get up watch TV or Read or go on the internet, waiting for phone calls from my Husband or mum. Other than that no human contact at all? Thats why I write this blog, I'm shouting out into the world hoping someone will hear me and acknowledge my existence. Though I know through experience there are many others like me. Having contact with them through the internet literally saves me.

Please don't feel sorry for me, thats not what I want. I'm not sat here with tears streaming down my face. Its just this wasn't the life I had mapped out for me. These things just happen. Just when I think I have accepted my fate gracefully I start to resent it again. I just think when I have enjoyed myself and been caught up in the moment the next day or week can be extremely hard. It magnifies the solitude.

I have to believe that one day it will be different. This is the worst time of year as its so dark, gloomy and cold. You dont really see anyone. In the summer I will be in the garden and it will be wonderful.

Fatigue

Ok class todays topic is fatigue.

I'm a bit of an expert on this unfortunately. I haven't been able to post as much as I would have liked recently due to the fatigue I have been suffering. Also a few days ago my right eye kept closing which leads to double vision and typing with double vision is hard!

Everyone feels tired, I used to say frequently before I became ill "I'm exhausted" and usually with good reason too. I was exhausted, I'd probably worked a twelve hour day, walked the dogs for two hours that day and done the housework. Anyone after that can say they are exhausted. The kind of fatigue or exhaustion I'm talking about goes right down into your very bones and there's no rhyme or reason to it.

Most nights I sleep between 8-9 hours, before all this I slept 6 to 7. I had also been known to go to work on no sleep - after assisting with the whelping of nine puppies. I remember that day as it was beautiful, I also remember it because when I got to bed that night, it was Saturday, I thought to myself crikey the last time I was here was Thursday night.

Even as a teenager I never really had the duvet days that others had. I used to resent sleep, I thought it was a dreadful waste of the precious time we have on earth. I did sleep more after having Mono but even that wore off. I had never really been one to lie in bed all day. Once I was awake I was up and ready to go. Sleep overs were a nightmare for me. Even if we had been out clubbing until 3am I would still wake up by 7.30am, much to the annoyance of friends. I would end up going home before they had even woken up.

So now I'm a 8-9 hours kinda girl and if I'm feeling really rough during the day I will go back to bed for 2 or 3 hours and sleep some more. Sometimes I wake up really refreshed and feel like I have some energy, but most of the time now I wake up feeling groggy and disorientated. Every night at some point I will wake and shoot bolt upright in bed with the feeling that my throat has completely closed over and I can't catch my breath. My mouth is dry and there are tears running down my face. This used to really scare me, but it has become such a regular feature of my night time routine that I just grab a drink and then go back to sleep.

When I feel this fatigue that I now suffer with, its all encompassing. Even a rest or a period back in bed will not shift it. Every movement feels like it takes an eternity. Every limb feels like theres a fat toddler attached to it and won't let go.The worse thing about this fatigue is the inability to think straight.

I like to think that I am a reasonably intelligent person - ok my spelling can be off sometimes and I apologise for that! When I'm hit by this fatigue I can't think, even about basic things. I see patterns and connections with everything, its the way that I my thought process works. Even if its really obscure connections. I used to have a photographic memory, I could read a document and then recite it back to you almost word for word. When the fatigue hits I struggle to remember how to make a cup of coffee! (And I take my coffee black so there's not a great deal to think about). I can't trust myself to make rational or reasonable decisions. I feel like a liability.

I feel like I am a battery that has been drained of all its energy, but theres no way for me to get any more juice and recharge myself.

Sometimes the only way I can get a clear head is to plug myself into my oxygen concentrator for a few hours. Today is one of those days. I woke up in such a fog after having some really vivid dreams. I did feel a tiny bit short of breath and just ignored it as it happens most days. It wasn't until I went to have a shower that I noticed my lips were blue, as were my nail beds. I felt the temperature of my hands and they were warm so my nails weren't blue because I was cold. I had a shower and then rested for 30mins. It was nice as I could finish the book I had started last night.

I've been on my oxygen concentrator for around 2 hours and I feel perkier now than I have in several days. My mind is clear and I can think straight. My muscles are still weak and I'm still sofa surfing but my thoughts are clear and strong and I don't feel like a liability. Today is a day when I wont try and set the kitchen on fire by forgetting to turn off the ceramic hob and then placing something flammable or combustible on top of it! (Which is why I'm not allowed to cook unsupervised any more!) Today is a day where I wont forget to put the phone down and block the other persons line for hours and I mean hours! Today will be a day when I remember to take my medication when the alarm goes off instead of just turning the alarm off and then forgetting to take it. Life wont be so hazardous today.

My early warning system Frankie, my 3 year old dog is obviously not so sure that the oxygen will be all I need today. Frankie was born just over 3 months before I got ill and has only been away from me for a week. (He was sold to another family who then had to give him back to us as their children were allergic. They named him Frank, which we changed to Frankie. Had I know we would keep him his name would have been Monty as his Pedigree name is Monte Carlo baby).

Frankie is my early warning system and he's my boy. I call him my early warning system as before I have a big crash or become ill with something other than MG, he will not leave my side. As I type this he is lying fast asleep beside me with his head on my lap. He's been like this since I got up. Just before I am ill he sticks to me like glue. I can't even use the bathroom without him barging in. This ba
behaviour usually starts three days before it happens and will only stop once I have recovered. The girls although I know that they love me dearly do not display this gift. Normally all three dogs will stay upstairs alseep until around 1030am, then Frankie and Willow will join me downstairs and then Mollie will eventually appear at around 1300. Today Frankie has been stuck to my side wherever I am in the house. As soon as I got up he was at my side. Im hoping that what ever it is that has provoked this response in him isn't too serious and will quickly pass. However with his sudden behaviour change it looks like I could be in for a few more rough days.

I will keep you posted!

Functional Symptoms.......

On Monday the Oxford hospital phoned to say that they would be arranging when I can be admitted for investigations. To be honest its been playing on my mind. I really really don't like being in hospital or actually having to deal with Dr's. Since becomming ill I have experienced the duplicity of the medical profession and its not nice. It has caused me to doubt that I am ill, although the physical evidence is over whelming. It has driven me to tears and caused me to question those close to me if they believe I am ill or if its all in my head.

I don't really have a choice about being admitted. If I go, I look like an attention seeker, which we already know they think I am. If I dont go I look like I dont want to be exposed as an attention seeker. I really am in a no win situation.

I have been lucky so far in the fact that no one has actually said the dreaded C word. Which is Conversion Disorder, ( I apologise now to you M, as I promised I wouldn't talk or think about this again, but it needs to be documented here.)Conversion disorder seems to be gaining popularity again and mainly in the field of Neurology. It is a "disorder" where the patient manifests his or her emotional or mental health problems by the body manufacturing symptoms such as ptosis, paralysis,Pain, trouble speaking, trouble swallowing and even blindness. You may have heard of hysterical blindness. I know I first heard of this when on the Australian soap neighbours the character "lucy" got it when I think, (it was a long time ago) her dog Bouncer went missing. So you see the stress of the issue surrounding the dog caused Lucy to go blind temporarily.

I am not doubting that there are indeed some patients who present at a neurology outpatients department who do indeed have a physical manifestation of their stress. However this diagnosis seems to be used a lot more frequently at present. For some interesting reading find the publication ANCR Jan Feb 2005 (volume 4 issue 6). This article talks about how 33% of Neurology Outpatients have no organic disease process going on, or in Neurology speak they have "Functional Symptoms". Its quite distressing reading if you are one of those patients with "functional symptoms" as it shows you how the neurologists view you and how they use certain termanology and patterns of speech to convince you they are doing everything they can to help you.

A man called Slater did a study on patients who had been diagnosed with Conversion disorder and found that 25% of them had been misdiagnosed. With the advent of the research many years ago the label conversion disorder seemed to slip from favour. However new research has bucked this trend and now says Slater was wrong and only 4% of every patient diagnosed with conversion disorder is misdiagnosed. That 4% still equates to 4 people out of every hundred with a serious medical condition being denied treatment because some one couldn't be bothered to a)listen or b) investigate the cause of this persons condition. I still feel that the error rate is probably a lot higher. We also need to know how many patients are being diagnosed by neurologists and how many by those in the mental health field.

Too many times as I search on the internet on forums and the like I am finding people with serious medical problems being told that they are mentally ill. One heart breaking story was a mother who's 9 year old daughter had collapsed at home. The mother took her daughter to the hospital, where the daughter developed further symptoms paralysis, pain and problems swallowing. The medics carried out tests and said they couldn't find the reason why she was ill and she had Conversion disorder diagnosed by her neurologist. The mother of this child was pleading for help on a site where you can post questions and Drs answer. It had been 10 months, her child was deteriorating they had been to family therapy and individual therapy and the child had taken medications for anxiety and depression. The childs hair was now falling out and she was in horrendous pain.So much so the child couldn't be cuddled as she would cry out in pain. The Dr on the Forum told her that he would be wary of a diagnosis of Conversion Disorder given by a neurologist. He then went on to give her the names of other Drs to contact.

If other Dr's from other specialities are wary of this diagnosis being given by a neurologist, why are they still being allowed to do this? Would an oncologist give this diagnosis? Would a pulmanologist give this diagnosis?

Let me reassure you my belief is there must be some good neurologists out there that care about their patients and who will do everything they can for them. Its just I'm yet to meet one.I truly hope that one day I will meet one I haven't given up hope.

Im concerned about neurologists diagnosing illnesses/ diseases outside their own speciality.

Its not uncommon to read on forums where people have serious medical problems that on their journey to a diagnosis they had been placed on anti depressants for mental health issues that didn't exist or only came about due to the frustration of dealing with the medical profession. I have discussed this several times with friends when we have said "is it ok to get emotional at a medical appointment?" The consensus is no - don't get emotional, its seen as hysteria.Then on the flip side of the coin don't be emotional and you become accused of being detatched or not being bothered by your problems. Not being bothered by your problems is one of the "markers" for Conversion disorder,as is suffering from period pains- nope you just can't make this stuff up. Its a catch 22 situation in which a patient can not win.

To me neurology seems to be the only branch of medicine, where they seem to think they know all the answers and thinking outside the box, is not required.