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Guest Ph03ziX
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Guest Ph03ziX

Dear All.

Hello there. I'm Ben, and I'm writing this from England in the UK at 4 a.m....

('Tis a strange time to be typing away on the keyboard I know) but I decided I may as well try and get to know you guys, being I've been reading your messages

on and off since the summer and have never 'come out' [places hands camply on hips and raises eyebrows].. Just kiddin'. :D

The reason I've never signed up here, is due to lots of problems I know you all understand and also because of the fact I've been trying not to 'give in' and ask you all lots of questions that are constantly on my mind. I guess you could call it denial or my male ego trying not to look weak. LOL. Well maybe too 'freaked out' to ask is more accurate I guess. :D

I'm sure it's rather annoying someone 'new' turning up here and pestering you...''do you get this'', ''do you get that?'' etc etc. Hence I have this forum in my mind as the sole place on the earth that exists where people with my condition appear to congregate, but I haven't yet joined in. Thank God (Literally) for this place, and its founder though, I've never had a word out of anyone I have seen about how to manage this condition other than 'lie down'.

Well it's 2005 and I'm still stuck in the 'situation' I have been in, and my new years resolution is to actually see if I can find out more what is wrong with me, rather than just searching 3123213 threads for key words, and hoping someone has the same weird thing as me, and seeing if/what they can do about it. I also need to try not to give in to what I am told (that everythig is un 'fixable') and assign myself to being as bad as I am. Like you all, I still have fight in me, and a desire to get healthier, it's just hard to stay focussed when everyone you're surrounded by either thinks you're mentally ill or just 'screwed' and your body feels overwhelmingly awful.

To be honest, in the 13+ years I've had M.E/CFIDS and now POTS, the only people I have ever heard of that are actively able to try and fight their condition with medical help are Americans, or should I say anyone OUT of my little country called ENGLAND. I think this silly little thing called the 'Stiff Upper Lip'which is meant to epitomise the English is plain dangerous when it comes to health. When I see how you guys get help, or at least TRY to, it's simply laughable how us English just lie back and take no medical help in our stride.

Reading this forum has helped to recharge my interest even more in not accepting 'no' for an answer. I like all of your 'attitudes' it is ofcourse similar to mine, but you guys aren't at least brandished as being 'maverick' or 'head strong' for standing up for what you believe in, that POTS and it's terrible symptoms are real and physically based. When you've had people deny POTS is real to your face for so long, and by 'experts' in neurology like I have, it DOES rub off on you, you do begin to give in.

Let me explain if I may: (Applogies my message is turning into a short novel).

Here in the UK, you are trapped within a state health service system 'the NHS' that either denies you are ill, or admits it, and then tells you to go away and stop asking for medical help, or in my case you're put in a mental insitution as they don't believe you as POTS is not real in M,E/CFIDS according to English Doctors. *Long story*. :)

Maybe if I can quietly 'slip' in here, then I can let you guys know my story, and hopefully see if yours is similar, or at least the symptoms of what you are told 'POTS' is, and what I am told 'POTS' is. That would be great, but I am cautious of annoying people with negative tales, as my situation is currently that.

I can't come forward with tales of great people as I've never met them, only bad people. (Doctors). I therefore don't want to be portrayed as the English 'dude' who must chew Prozac for breath mints...

On a lighter note, I'd just like to thank the person who made this website (A lady called Michelle I think), as if it wasn't for this website and reading peoples messages (you guys), I would still be totally un-informed about POTS, and still stuck in bed.

I'm also very impressed by everyones resilience to such horrible symptoms, and reading peoples messages, has certainly (at times) kept me calmer, or more in control at times of things going 'crazy' as they often do.

At least now, I know a little more about POTS and Dysautonomia, and that helps a lot when all one is offered in England by the medical profession, is denial or silence.

Thankyou all. :)

Ben.

Edited by MightyMouse
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Welcome "officially" to the forum. :)

We have a number of members from England here, as well as a few from other parts of Europe.

In addition to the forum, Michelle (the site owner and founder) has put together a pretty comprehensive set of pages with info that covers all the basic questions most newer members would likely have. It's a lot to sift through--and even after having been officially diagnosed for quite a while, I still find myself reading through the information again and again.

Here's the link to the main site:

http://www.dinet.org

also, NDRF has a free book called "handbook of dysautonomias", which you can download as PDF files.

http://www.ndrf.org/NDRFHandbook.htm

Happy New Year to you! May it be healthier and happier than the year that has just ended. :) Nina

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:D Good Evening Ben and welcome to the site - I am glad you finally decided to post your first intro after reading our posts for awhile - You are very brave to take your first step and tell us your story, nothing would surprise me with what your doctors would think-There are also some here in the states just like yours in England that do not know much about POTS and unless you take time to educate them and hope they are willing to listen, they think you are crazy. On a lighter note, I hope you have a joyous and healthy year in 2005. I too am up in the middle of the night like you, so I figured I would welcome you since I cannot fall asleep yet. :):) Have a great Saturday!!Beth in New Jersey,United States
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Hi Ben,

here's a welcom from the Netherlands. As you can see: POTS is everywhere :) .

And don't worry, not all the doctors are bad. Keep searching until you've found the "good guys". I know there are! Wish you a happy and healthy newyear.

BTW I watched the fireworks at the eye of London on television last night: wow, that was just great!!!

Corina

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Hello Ben!

Welcome to the forum! Please feel free to post about your situation and not feel like you are pestering us. That's what we're here for. And thank you for the compliments on the website and forum. I'm glad it has helped.

Best wishes,

Michelle

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Ben

I enjoyed your short novel, jk...it was a great introduction :)

Don't feel like you're pestering, lord knows I have ranted enough for everyone here. I think we all go through such a process of denial, anger, sadness and then for me more anger, anger, anger :) Hey it keeps me going forward and doesn't let me fall victim to the doctor's who tell me just deal with it. We get the some of the same crap here that you have to deal with too, you just have to be persistant and not give in to their laziness and lack of knowledge.

As for the CFID's, I think Europe has made great strides on how serious and debilitating it is. Their work with M.E. will probably prove CFID's existance.

Anyway, there is a GREAT support system with a lot of caring and knowledgable people here so you've come to the right place.

I have read some good things about Dr. Mathias in London and Dr. Furlan in Italy.

This is one of my favorite information websites too http://home.att.net/~potsweb/POTS.html

Take care and welcome aboard

Steph

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Hi Ben,

Welcome. I enjoyed reading your post and your English sense of humor. A good sense of humor will definitely get you through many of the "POTS" holes in life! :)

I couldn't tell from your post if you have definitely been dx'd with POTS yet, or that you feel you have POTS based on your symptoms but the doctors don't believe you? Has anyone done any of the basic tests, such as a tilt table test?

I know it can be so frustrating -- even here in the U.S. I had to basically diagnose myself and take the literature I found from the internet to my doctor. It was only then that he finally agreed to send me off to specialists for testing.

Don't give up hope! There is bound to be at least one doctor in all of England who is knowledgable and open minded enough to listen to you and do the proper testing.

Here's to a healthier, happier new year! Feel free to vent or ask questions on the forum anytime...that's what it's here for! :)

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Guest tearose

Welcome Ben!

There are many others with your weird symptoms here! :) You'll feel at home soon I hope! In fact Stacey from England suggests some kind of "pj tips tea" to help her "get a grip".

Don"t be so hard on yourself as you begin to understand all that dysautonomia is about. Like those before me have said, get a good doctor and get a thorough diagnosis. Also ask a lot of questions. And take notes!

From what you said, you've been looking around for awhile so hopefully you know how to search the past discussions for lots of valuable information.

Please don't hesitate to ask, dump, share, laugh, gripe...we are all in this together!

warm regards, tearose

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Hi Ben. I agree that this site has been such a support to most of us who otherwise wouldn't have a chance to share. Most of us have been misdiagnosed initially and then been basically told to suck it up as well (I love your reference to the English stiff upper lip). I would like just once for a local physician to acknowledge how difficult it is to function with this condition. Happy New Year! Martha

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Hi Ben, I'm in England too, and I am also very new...I've only been a member of this forum fro a couple of weeks. There's another girl here I've been chatting to who's from England aswell. THere are a few of us Brits on the board :D I know exactly what you mean about the NHS. :) THey've done nothing for me in 11 years of fainting :)

It's only since I discovered this website and spoken to others that I've plucked up the courage to demand a referral to a specialist in this country. :huh: I'm haivng to travel on the train to London with my Dad to see this specialist, but I've been assured by others that he is a really good doctor and a very nice man. I'll let you know how I go, and then maybe you could get a referral to him too? He's a Professor from Imperial College and he is a neurologist, I think. :) Anyway, you'll find his contact details on the list of physicians... B) God, where would we all be without this website? When I'm better and more able, I want to start doing fundraising and profile raising events for this group and the condition in general.

So sorry to hear about your misfortunes. I've not been sent away anywhere, but after 6 days in a coronary care unit, a neurologist came to see me and told me that I need to see a neuropsychiatrist who deals in unexplained physical symptoms because there is no physical cause for my faints. Well, from reading this website I know he was full of LIES. Even my GP agrees with me, and an endocrinologist I have seen at a different hospital. :P

I have it on good authority from a former chairman of the British Medical Association that inthe NHS, you are given a WEEK in hospital while they try to find physical causes for what's wrong with you. If they can't, they tell you it's stress and chuck you out. And label you mentally ill. This has happened to me more than once. Don't feel bad! You're not alone. Speak to you soon ;)

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Guest Ph03ziX

Hi again. :)

Well firstly thank you ALL very much for saying such supportive things, very kind indeed and for writing back with your own ideas/views! I did feel a bit odd 'exposing myself' then thinking to myself it was rather pointless as I'm just another POTS patient. Still, it's good of you to bother replying, cheers. I think it's rather good the way we can all chat on here and talk to experts in our conditions, sadly though, the experts are US!

0)) I'm suddenly imaging a good TV advert for Dysautonomia 0(( Do you feel 'blah blah blah'? Well hit yourself over the head with a brick, and dont drink or sleep for a week, then call this toll-free number to get advise. Except there is none :o Maybe we should make a video about POTS and make Doctors watch it enforcably, like in 'A Clockwork Orange'. :P Then again there would be a poor uptake as most of them are selling crack in the local carpark I imagine. Did I tell you I saw a Dr talking to himself a while back, well actually he was talking into his rucksack 'strap', whilst scratching... something. ROTFL. He bumped into me. I used to speak to him, and he'd stand there motionless. eyes glazed. Either he's been working too many hours or he's been having too much of that 'special' cough medicine grandpa gave him. Trust me to use the wrong 'exit' at the Hospital...In hindsight maybe most Junior Doctors are like this worlwide. ?!

Anyway, yes you're all correct, we should see specialists, the problem is I did, and as the place was like the 'Elitist' of Englands services (apparently) now I've been diagnosed with POTS... apparently you can't come back to see the 'specialists' again as it's not treatable. Seems an odd way to run a health service. Maybe they get annoyed I keep telling them I'm going to sue them? lol.

I shall elaborate in a another message about my run in with the 'Psychiatrists' and how one ends up in a mental ward, but to do so I need to get out my Valium first and attend my anger management sessions, play a violent computer game or two, look at a few silicone women on the Internet, then go to confession.... Only then can I mentally cope with telling you all how CRAP England is. (Not that you guys hadn't figured that out, or that I've quit sniffing furniture polish). I know people with Dysautonomia are treated with disbelief, but I jolly well hope you guys dont get put in a place that's like a movie set where everyone's in a trance and oblivious to everything. (Like me learning to cook).

I think I'll prepare myself for asking lots of questions to you soon, I shall need to get a manicure and dress up in womens hosiery though, maybe call myself 'Linda' and have a homepage with fluffy kittens and pictures of Jesus.....that should make me fit in well here? Maybe not as this isn't FMS CHAT... I doubt you all come from Texas anyway. (My Uncle does, but he's not a woman). Well I hope not....

Thankyou all once again, really.

You've cheered me up, can you tell?

Ben.

P.S I'm not bi-polar, really.

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Ben,

First, don't change your name to Linda...we probably need some males around here to keep us in line anyway?! :P We are mushy, gushy bunch, so look out! :o

Second, WELCOME!

I am off to bed, but wanted to welcome you here and I am so glad that you found this site. I wonder if Michelle ever imagined the impact this site could have on people's lives?!

I love that there are folks from around the world here. I hope that you will be able to chat with persephone and others from the U.K. and you all will be able to help each other navigate the system there.

Keep the English humor coming our way! :)

Emily

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Hi Ben!

Welcome! So glad you found us! I have to tell you that you are hysterically funny...in case you weren't aware! Your idea about the dysautonomia tv commercial had me in tears laughing so hard! :P

I can really relate to the treatment you've had in the UK over your illness...I am not from the UK, but we have a lot of stupid people in denial here too! Actually, in my case I was born with POTS, suffering severe symptoms ever since I can remember. However, I was not diagnosed with any type of physical problem until I was 21....and not specifically with POTS until I was 36! I am now 38....my own parents to this day will not accept that I have anything wrong with me...I can only imagine that it's a guilt thing since I was born with it....so I really understand what that type of "conditioning" can do to a person. For years I tried to "control" my symptoms....my parents always told me that it was all in my head and that I was just "too nervous and hysterical". I, unfortunately, believed them. I've had doctors tell me the same thing.

It wasn't until I met my present doctor that I finally felt understood and justified in feeling the way I do physically. I am so sorry to hear that you have not been able to connect with an understanding, knowledgeable doc....I think it is the most important thing in dealing with this type of illness.

Anyway, balh, blah, blah....I really just wanted to say WELCOME! I think you will really find a lot of support from this wonderful, fun, compassionate and SMART group of POTSies!

Ask, tell, and vent as much as you need and want to! We are here for each other! I think you will find that no one understands what you are going through better!

Good luck! Perhaps you can hook up with the doc that Persephone is going to see????

Keep us posted....I look forward to hearing more!

Kristen :o

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Welcome to our jolly old site Ben. We are always happy to have new people. And we have ALL gone through what you have, believe me. Whether it's England or the good old Us of A, there are dork doctors everywhere. I think most of us become research experts and eventually diagnose ourselves, and then patiently explain it to doctors, whose eyes glaze over and ears stop working while the minds are spinning out, how dare she or he know more than me, I must convince them they are crazy or how can I explain that I make money hand over foot having absolutely no idea what's wrong with them. The audacity of average people knowing more than me! :P It's like shopping for a pair of shoes, you have to look until you find the pair that fits. Your health care system is not ideal as far as I can tell, so I am sorry for that. Put on your Linda wig, come on over and see someone here. No guarantees, but you never know. You will always have friend here, and this is definitely a place to vent, there is always lots of support. Agian, welcome and take care of yourself. Morgan

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Dear Ben,

Welcome! I haven't had a good dose of British humour in years (I grew up in West Africa and had a bunch of friends from England)! :) Your posts have kept me laughing!

I'm so sorry to hear about your healthcare dilemmas -- psychiatric ward?!!! :):P:(:o I (like everyone else on this forum) have been trudging through the medical mire (but on this side of the Atlantic) trying to get to some sort of effective treatment. I'm lucky, though -- only one doctor who didn't seem to believe how much the POTS symptoms have changed my life -- it's taken nine months, but she's finally starting to get the picture. :huh::) My dad's a doctor (sports medicine, unfortunately), and has been a HUGE help in navigating the system.

No need for a wig or pics of Fluffy -- we can use some more guys on here! Join the conversations and ask all the questions you like! Keep us posted!

Angela

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Guest Ph03ziX

Thanks for all the replies (bows) and appologies for any sillyness, I think I get rather excitable sometimes when I have a tiny bit of energy. Blame M.E/CFIDS for that oddity. Anyone who has it will know what I mean, it's like drinking too much caffeine withought the tachycardia, but in your brain rather than in your body.

To the person who's dads a Doctor. Are we all jealous? Yup. :blink: Infact do you ever get Doctors with POTS? Seems like people who 'know' can always have a better time of it, as they know what to do earlier on?.

Apparently I come over as hyperactive or 'camp' when I write.....according to the few friends I have, Ok, the one...Which is a shame, as in real life I think I look like Mr BeanVs Robert Downey Jnr[post coke] and dont wear 'push ups' or act 'camp' at all.... Seriously I meant that I find it bizarre that I have to put on 'stockings'under my jeans due to POTS... I know you ladies are used to it, but for a man?! It's especially odd when I find myself (as you do) having to drop your trousers to pull them up ALL DAY, rather awkward when my father walks in the room and thinks I'm doing something else... Well maybe, but not with a bacon sandwich in my right hand! Hmm, with my new legwear I seem to have taken to show any visitors I get, these white leggings....particulary fetching on a man I feel, with all the hairs poking out between the material! Seriously though, aren't they a godsend, if uncomfortable. I can't walk anywhere withought them mainly due to the after effects. Again withought this website, I'd never have known the effects of compression stockings. I found it out accidently in Hospital that they helped but presumed it was psychsomatic, well sort of as it seemed impossible.

My research tells me you guys don't wear actual DVT tights, but ones made for POTS? Or is this wrong. I don't get if we're meant to be wearing Hospital 'bed-rest' ones like I am, or proper 'Executive' Items for $$$$$? Do you own more than one pair? Mine have turned brown after 8 months use...<g>. If you stretch them over your head you can look like you're in the Taliban. Regarding that subject....Do you find your ankles are all swollen at the end of the day? (Due to compression stockings) like a Michelin man at bottom of your legs near your feet, (That's a french tyre company). Or a Garlic Sausage constricted with 'bands'. even? lol. It's like all the fluid in squeezed down there. Is this OK?

It doesn't seem to go down if I rub it. (Careful!!!!). Seriously, after an hour they're still all squeezed and squashed. On second thoughts I'd better not mention the French here due to the 'FOX NETWORK' war on terror alerts... I think my war on 'terror' is trying not to look at myself in the mirror, or is that Bill O' Reilly naked looking at me in the mirror? A similar effect I imagine. Impotence.

I'm surprised to hear everyone here is mostly female. Then again ofcourse women are weak (according to Psychiatrists) :) ... Long Pause......But then again these experts look atlittle boysplaying in the park for kicks, so what do they know huh?. It is sad, to think that in this day an age, biggots, infest the Psychiatric Profession, still. In England we call it the old boy network. Imagine older gentlemen, smoking pipes, and wearing size 30 trousers to hide their midriff from drinking so much Port. (No, not your Grandad!)... Usually instiutionally sexist, racist, anything 'old fashioned' types, the sort of people who fund political parties. You know I think WOMEN are blamed for all these diseases, as historically or shall we say genetically, they are more gentle and calm, and therefore an easier target. Those who say horrible things are less likely to get 'bopped' for their acccusations by Women. Rather like 'Gays' or 'Blacks'. How can these people reply if they have no 'voice'? No forum or medium to fight back. :-( Maybe this is why when MEN get ill too, their predjuice nonsense is exposed for what it is, so a 'NEW' form of mentall illness is fabricated by them. M.E/CFIDS or even POTS becomes 'Unexplained Symptoms' or Somatization Disorderwhich can encompass men too. How convenient.

I wonder if the % ratio split of POTS of CFIDS patients really is 70% female to male? Obviously genetic, but Psychiatrists say 'Hysteria'. Idiots! I've often found people with M.E/CFIDS to be the second child, with the first being 'healthy'. I wonder if this is also common in POTS? It's as if after the first pregnancy something is triggered to make the next one malfunction. Who knows....

Do you guys have ILL MOTHERS? All the people I know, or OK, the majority of people I know with M.E/CFIDS have ILL MOTHERS, but the FATHERS are OK.

Do you find this too, or is it just a coincidence? I shall leave you with that cliff hanger....

Thanks again everyone for all your stories and messages and words of wisdom.

Much Appreciated. I do agree Michelle the forum God should be worshiped. This forum is unique. Perhaps we can set up a shrine to her and worship her, form our own Cult (Note spelling)..maybe get some Mormons involved to knit us some little hats?All pray to the Sawicki . Hummmmmm. etc etc. The joining fee is $17.99 per month and it wont show up your credit statement. :huh:

Cheers for now.

Ben.

P.S Hayley I'm from Cambridgeshire, currently residing in the FENS. It's OK, but rather uninteresting. Travel 20 miles due east and one gets out into the countryside. Don't get lost there at night time. I hear it's inhabited by half-wits and Inbreds. Que scene from Texas Chainsaw Massacre 2? I once said that to a girl who fancied me on ICQ........her dad was born there and loves Cliff Richard.

We never dated.

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Hey Ben!

I'm the one with a doctor dad -- yes, it's great! I get treated halfway better because the local docs think he's great and, I suspect, because they know he'll ring them up if I'm having difficulty with them! :) He's been helping me get my portfolio together to take out to Mayo, too [sigh of relief! :) ].

As to your question regarding doctors with POTS, no, I've never run into one. Most of the doctors have looked at me blankly when I mention POTS -- my dad, my neuro, and the electrophysiologist at UPenn who diagnosed me are the only ones I've met so far that have heard of it (and actually know something about it, too!). The only other doctor for whom the name POTS meant anything was a surgeon I went to for the removal of a small mysterious lump on my head. In one of the pre-incision visits, I mentioned that I had POTS. He stared at me in complete astonishment, thinking that I meant Potts Disease (tuberculosis of the spine! :blink: ) -- never heard of the autonomic POTS, though. :)

Good luck with those pesky stockings. I don't wear them myself, so I'm afraid I haven't any advice in that arena -- those Michelin Man ankles don't sounds so...healthy, I suppose (sorry, I know that sounds absolutely ludicrous considering all the other problems we have to manage in POTS! Brain fog is running rampant and I'm having trouble finding suitable vocabulary to get my ideas across! :) ).

As for your genetic musings, I have a friend with CFIDS whose mother has it. In my own particular case with POTS, however, we're still looking for genetic links. My mom is healthy. My seizures and migraines apparently come from my dad's side of the family. He has MVP (my heart is perfectly sound) and ocular migraines, but is healthy in most other respects.

Well, I'm off to the couch again! Welcome once again to the forum, o zealous Sawickian :lol: -- glad you're finding it of help!

Angela

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You Brits are too funny. Ben, you're so honest. I love how the docs won't see you again in the UK ,because they say the condition is untreatable. I have been told that there is treatment per se but no "expert" I've seen says that the treatment only helps a little when you call them back and tell them you're still dizzy in spite of the fact you've done everything they've suggested. Hang in there. Martha

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Hi Ben,

I applaud you for "coming out"! :) It's so great that you felt ready to tell your story. It sounds like you've been through some incredibly frustrating circumstances. I hope that 2005 will be a breakthrough year for you. :)

Email me anytime if you have any questions about symptoms, etc. or you just want to vent.

--Kristin

Wisconsin, USA

kpare29@mail.com

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God YEAH, that's really weird...I have an ill mum and perfectly healthy dad. Ben, this is uncanny! Add me to your msn...would like to chat to you live. THese boards confuse me...I'm an English student., am very dim!

I was also told about "somatization disorder" and anxiety. My GP who backed my POTS theory and diagnosis all the way tells me not to be angry, that I should look forward not back, but because I'm a final year student at a decent university, these so called experts who I tohught were supposed to help me, jumped right in and assumed it was a stress related disorder.

NHS cretins. I won't use the names I really wanted to, people here are civilised beings!

how old are you Ben? I have an image of you as twenty something. I'm 23.

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