Becca_7706

Hi, I have spoken to DVLA. They suggested the same things you have to avoid the forms etc (not too sure if you want to take that as a compliment or not though - it is meant as one honest!) But the council have said they will *only* accept a refusal letter from the DVLA as proof which of course also means finding money to pay for the application as well. Still at least DVLA were as hacked off as I am - it just adds more work for them. The person I spoke to said it was highly likely to be refused and shouldn't take too long to be refused as it is 'fairly common sense that I shouldn't drive'. Hadn't thought of Dial a Ride. Thanks for that! Becca

Thank-you both for the replies! I didn't quite explain myself properly (no surprise there then!). I need a *rejection* letter for a licence in order to qualify for a free travel pass. My rate of DLA isn't high enough for a travel pass (I don't get high mobility which is the qualifier). The odd thing is I have already qualified for a railcard (which I use quite a bit) but our council are exceptionally strict about bus passes. I did appeal it being turned down before but the dr they sent me to see said I was fully capable of driving (how scarey is that?!) I do already get some taxi vouchers for essential travel (which are great!) but am looking at ways to get my expenditure down - I spend way more than my mobility DLA currently. I have spoken to Prof and GP about it and both said they would fully support me not driving and to apply (even though I spend more on taxis the saving from a buss pass would be more than worth getting with the prices really hiking up locally for those occaisons I use a bus for). Does that make any more sense? Sorry for confusion! Becca

Hi, A quick question for those in the UK with syncope attacks. This is going to sound mad but I am a applying for a licence, but not to drive it is in an attempt to get a bus pass (due to the huge amount I pay out for travel these days). I have no intention of driving because I have quite a lot of syncopes. I was wondering two things, one if anyone here has had a licence refused for syncope and two what happens when you have multiple conditions (I have EDS and RSD as well)? I've looked on their website but it is a nightmare and driving me Any help would be appreciated, Becca

Morgan, It isn't pathetic. It is sad and I say that because it is exactly how I am feeling right now. I saw a counsellor last week who told me I should start seeing how stressful and upsetting it is for my doctors seeing someone like me!! He did conceed when I explained that in fact it was anything but upsetting for them - they can walk away and forget about it - we cannot. Becca

Hi Persephone, I am considering it. There are things that are happening that I have glossed over though to do with my mental health which I'm a bit worried about telling them. Have you contacted either of them yourself (can't remember if you said you had)? Becca

My news is that having spoken to a GP shortly before Christmas I discovered that the mental issues I've been having have been diagnosed as attention seeking and that I had been lied to regarding referrals. The pain clinic one has now gone through but will take about 18 months which is very depressing. The epilepsy referral cannot be done direct - they won't incur the cost (because it is so likely to be psychogenic only and a waste of time) so will also take a year at least I have been having some quite severe mental health problems recently. My CPN (counsellor) has been supportive but things are continuing to get worse in that regard and he is now worried too. Right now I am more concerned for those problems than my physical ones because my ability to cope is nil right now. Everything is just getting too much for me. Which is why I've been avoiding logging in and reading posts, so for those who asked me to let them know things were okay, forgive me for worrying you, I just haven't been up to doing so. Pat, yes I had TTT. Several times there was a vasodepressor response but I had no symptoms (but then I am symptomatic most of the time because of the EDS so that doesn't really mean anything). The only time it went really out was when the dr kept going on about blood being taken and getting me to pump my arm really really fast (which causes blackouts in me - the pumping not taking blood). I also have problems after eating too. I'd like to follow up the EEG thing but like I said above it'll be a long drawn out process. I haven't contacted the Profs because I'm too scared of what they'll say. Sorry this is a depressing post. Hope all are well!

Sorry. Bad habit I have calling people they. GP or psychiatric clinic (psychiatrist/CPN) as all others have discharged me including my physiotherapist. The GP/Psychaitric clinic are the people contacted regarding my condition and its impact on my life. They (psychiatric clinic) say it has no impact on my life because it isn't happening as much as I say or impacting as much as I say. Because of this I can't get the help I need from social services (help with heating due to being disabled as at the moment I have none) or help at work without evidence of needing it. I guess that is the power thing. The GP was okay first couple of visits but at last visit said I needed to psychotherapy to find out why I don't want to cope and be happy and well, which has put a bit of a dampner on things. Also they did refer me to pain clinic but when pain clinic refused referral pending further tests they accepted it and I'm stuck again as the orthopod I was under is refusing to see me as she also says it is all psychogenic only. Does that explain it?

I have had such an awful day today coming here and reading your responses have reduced me to tears because I feel so understood by you. Pat, the EEG showed epileptiform and some lobe issues. The EEG had to be stopped really early cos I felt unwell, my face spasmed (which happens just before a nasty syncope which are triggered by strobing usually) and the technician stopped the test saying everything was fine. However, prof kindly sent me a copy of his report and it says that these things showed up when it was formally analysed after I left clinic and said it needed further investigation by an epilepsiologist - okay that definitely isn't spelt right a person who specialises in epilepsy. Problem is that my LHB won't fund me seeing anyone cos they say it is just syncope and not worth it. Morgan, they plan to treat my psychogenic condition with betablockers, antidepressants and psychotherapy. The psychotherapy will not begin until I admit it is not physical and am willing to make the changes necessary e.g. stop fainting and letting my illnesses control what I am able to do and accept responsibility for it happening. Which I have tried already but they say I didn't put in enough effort in doing so and that's why I'm still ill. They are saying it is all caused by family problems when younger and not learning to cope properly. I've got to admit I've similar thoughts on the psychiatric diagnosis thing. I've asked them to show me how this is possible and why people who have my symptoms get treatments (I've only been allowed two) if they didn't have family problems but have got nowhere. I've got to admit they are stressing me even more with their comments I know stress makes the problems worse and there are other things going on making things worse too, which I don't want to disclose here, but at least some of the issues could be sorted out if they would drop this 'official' diagnosis. I've got to admit to being nervous about approaching professor Mathias but perhaps I should if only to find out if he will see me again when his instructions have been ignored. Thanks for the understanding I really appreciate it! Becca

I was wondering what others knew of this disorder. Having seen someone for three times at the psychiatric clinic for therapy I've been told I'm too stressy and emotional to have the physical form - despite prof Mathias saying otherwise and requesting various tests/treatments from results that came to light after I left clinic (e.g. EEG problems). I do not deny I am stressed out and very upset right now - for reasons I will not go into here but do not understand how not being bought up in a particular way and having had health problems all my life changes my diagnosis. I was wondering if anyone could shed any light? The psychiatric clinic say it makes no difference - psychogenic just means no organic problem. However, since this has been put on my notes the EEG problems have not been investigated, pain clinic referral has been stopped (as EDS/RSD has been labelled as psychogenic) and now my benefits are under question not to mention being bullied by work to do more hours because the psychiatric clinic say I'm letting myself become disabled by my health. I'm not questioning their diagnosis - I don't have the strength to do that. I just don't understand how someone who has my symptoms and difficulties but had a happy childhood has a diagnosis of physical illness and treatments where as I am refused on this basis. Has that happened to anyone else here? Becca

I'm sorry Morgan. Drs can be stupid sometimes. I too can understand being saddled with psych diagnosis. Have a huge *hug* and take care! Becca

Thanks for posting that. Becca

I have written to Professor Mathias. It wasn't the greatest email going but I knew if I left it much longer I wouldn't bother. I explained about last week and asked about the whole thing about how I can be cured etc. I am trying to not 'act out'. It's really wierd because I ~never~ have before. Anyway, feeling exahusted right now (looong day) I just wanted to say thanks for helping me not to feel so alone. Once I can 'get a grip' I can maybe look into finding some support. The difficulty here is support for physical illness isn't on the NHS so you must pay (and I can't) different places have different policies and considering just how much this has been effecting me I think they may consider a more supportive approach for me if I can get them to see I'm not doing this for attention. Becca PS Thanks to those who have sent PMs!

I *try* to each IT in a hospital to all staff from cleaners through to senior consultants. At times very rewarding at others (like today) downright frustrating. Just because you have a medical doctrate that doesn't mean you can sit IT exams and not do any work (honestly!) and I've lost track of the number of times I've had to defuse a situation because they have failed and are blaming me (cos yes it's my fault they didn't bother to revise). So it means both my IT degree and counselling qualiofications get put to use in my job I guess my main issues are the time I have to have off. I can't manage full time - the EDS and dys issues have begun feeding off each other (makes them sound like some kind of monsters!) so especially at this time of year working is exceptionally problematic. Also, I've had difficulty getting an accessible office and convincing occupational health I can work. Not too sure re: debt. I got a MSc in a subject I can never put into practice because my health prevents me from doing so. I loved doing the course though so I don't usually regret it (though there are times when I think what a waste of money!!!!). Hope that helps. Brain not quite 100% at mo! Becca.

Thanks for the support I was thinking of removing the post cos it was all attention seeking and stuff and I felt like I was proving their point for them - behaving like some stupid little kid. I can't contact the person from Wednesday. The receptionist has been told not to accept calls from me because of my 'attention seeking behaviour'. I haven't contacted Professor Mathias. Mainly because I'm scared he'll say he won't see me again and his team are the only ones in RL who get how scarey this is for me and difficult to cope with alone and just how much it hurts my drs being this way and they have blatently ignored him too. I can't bear the thought of him discharging me too. My friends get upset, even the vicar at church gets upset (which is diffiuclt for me because I could do with some pointers for my faith with what is happening right now. I have nowhere to turn and it is doing my head in. I mean I have my diagnosis now. From one of the top people for the illness. I expected the attitude to stop. I had mistakenly thought that the psychiatric clinic were behind me helping me with my physical ill health and have now discovered that since prof has written saying it's physical that they were only seeing me because they thought I was a liar (and incidentally had told other drs the same thing!!!!) and now it turns out I'm not making it up I'm out the door. I'm still battling depression and now my PTSD has come back too (stress and feeling trapped by everything has caused that) but now it's sort it out yourself you are physically ill and not our problem. To cap it off 4 hrs in A&E today to be told no fracture in hand just try harder to make pain and syncope go away. I cried. Got really upset (no yelling this time tho) and he said I need to sort my drs out and right now I can't. As pathetic as that sounds (and I know it is pathetic) it's for a very simple reason - I need my energy to hold myself together right now and try and keep money coming in as long as I can. Willows thanks for the PM. I'll reply asap. Becca

I had this illness so much. If I could get it round the neck I would *throttle?* it. I would. So I blacked out 10 days ago and damaged further my hand with RSD in it. That week I also heard my jobs finishing and my physio will not treat me anymore as I can't do the exercises without blacking out so treatment only when no syncope. She even said I didn't have proper EDS because my joints didn't flex enough. So back to my hand. I went to A&E had x-ray shows bone in bad state but no break and am supposed to go back today cos still in loads of pain and have another x-ray done - thing is I'm scared to. I've had some mental problems during the last week and ended up totally losing it on Wednesday. I ended up shrieking and screaming down the phone at the 'crisis' team - it was really scarey I've not lost it like that for *years*. Why? They told me I cannot have any help or support for my mental health because it isn't fair on those with 'real' problems. I'm wasting their time wanting help with coping with my physical health problems. They also told me that Profs Mathias and Graham can definitely cure me but are refusing to. They said they have the proof. That if I tried harder I would be fixed and free of pain and syncope and could then recieve mental support. And I went mad and lost it. Potentially I could be prosecuted for what happened that day. It was that bad. So I no longer have any drs. I've recieved a letter saying prof wants to see me again, but I don't know if that will happen now cos it was dated before I lost my temper And it's all because of this STUPID illness. I hate drs and everyone right now. I keep bursting into tears and picking fights with people. I really feel like I'm going mad. Everything is going wrong and everytime I ask for help I'm told 'No. Fix your syncope first'. Well shucks why I hadn't I thought of that????? Two questions... Have you been told 'Fix your syncope first' and told only then you can get treatment for something? and Am I really going mad????????