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Post by furiousfrog on May 23, 2013 16:18:43 GMT
Ohh, norepinephrine - I was thinking it was dopamine. (DRI instead of NRI!) Will look again. Thanks for post!
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Post by furiousfrog on May 23, 2013 16:07:45 GMT
Hey there,
Thanks for the info - have seen the website and have checked the BNF link too, the only contraindication is high blood pressure, which I don't have. There's no medical interactions between what I'm taking and what I want to take.
I do understand that atomoxetine's a dopamine reuptake inhibitor instead of seratonin, but it was the trigger when I see that the side effects are similar to the ones I've have with the SSRI's that made me concerned. Also, the long half-life is a nightmare. Coming off prozac was almost painful with frequent intermittent "electrical shocks" in my head for several months after finishing it. Am just researching now if this could re-occur with DRI's as well.
Would be good if I could actually, you know, talk about it, with someone that's involved in my care.
Am sorry, for being so negative, I'm in a bit of a state about this, think the delaying and misdirection (and lying!) has got to me and I'm just feeling really low.
Really appreciate the help tho.
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Post by furiousfrog on May 23, 2013 15:47:44 GMT
That's good to know - I might mention this. I'm absolutely terrified of taking atomoxetine - it's not like mph or dex and out of your system in 4/8 hours - half life is measured in weeks!
I got prescribed several different types of SSRI's when I was wrongly diagnosed with postnatal depression (main problems were lack of concentration and inability to relax or focus!?) about 13 years ago and I ended up losing a year of my life. I got so agitated they put me on valium and sleeping pills to reduce this and all I have left is a big black hole interspersed with memories of me doing really stupid, obnoxious and dangerous things. It worries me that atomoxetine's common side effects are agitation and mania and I'm terrified that if the same thing happens I'll just crash and burn again and have to spend years rebuilding my life.
I don't know what to do, but I can't even talk to my GP about it for another 5/6 weeks. Feels like my life's falling apart and they really couldn't give a flying f***
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Post by furiousfrog on May 23, 2013 15:13:48 GMT
Yep, so have spoken to psych who's been great. I'm not paranoid, he's confirmed that my GP's really, REALLY don't want to prescribe and have thrown it back to them. He's said that this area doesn't have the service for him to prescribe. They've said that as I had hypertension (I take a diuretic for this and now it's 120/78) they won't be responsible for prescribing methylphenidate. He's said that another alternative is atomoxetine which they're "thinking" about.
I've been told that the very earliest I can make an appointment to discuss this with my GP is at the end of June. (he's on a "course" next week and is away for 3 weeks afterwards).
Does anyone know of a consultant that'll treat it privately and isn't hideously expensive? In or around North bucks / Beds / Hertfordshire / Northamptonshire area? Am willing to drive but I can't go on with my GP.
At no point did they ever want to get me involved with my care, or discuss anything with me but they've just given me the mushroom treatment. Am so angry.
Does anyone on at the moment take atomoxetine? What's it like in comparison with the stimulants?
My biggest worry is I was prescribed prozac by GP last time I complained I couldn't concentrate and I had HUGE problems with it, was really agitated on it and got quite manic with it - some of the common side effects of atomoxetine look quite similar?
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Post by furiousfrog on May 23, 2013 14:33:16 GMT
Thanks for your message, nice to know someone else thinks I've got a point! Am really sorry to hear about your delay too. I think it's really not fair - you get dx, think "that's it, things are going to turn around" and they just... drop you to deal with it while you have to wait forever for admin stuff to get done!
Fingers crossed you get yours soon!
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Post by furiousfrog on May 23, 2013 13:14:49 GMT
I really need some advice from an unbiased person here if possible.
Sorry for the essay but I would be really grateful for feedback on whether I'm being paranoid or negative or whether I'm actually being screwed over by GP atm.
I was diagnosed add-ct about two and a half months ago now with an ASTI psychiatrist with a special interest in add and he recommended concerta. He sent a letter to my GP asking them to prescribe.
I got a text message from my local surgery asking me to make an appointment with a different GP to my usual, a week after I checked they received it. He seemed a bit odd about it, like he thought it was unnecessary. He read the report out in front of me, and then said stuff like"So, you think you suffer from adult add then?" and "this is all new for us - looks like it's just you".
He arranged for me to have an ECG and loads of blood tests to double-check that he could prescribe concerta and told me that he needed to write to the PCT to ask permission to prescribe it as, in his opinion, the prescription requests needed to come from the psychiatrist. Told me to make an appointment in a month's time.
So I went back after a month - tests were fine. He said that he needed to write a letter to the PCT (it hadn't been done) and then said he needed clarification from my psychiatrist about titration.
Psych hadn't clarified in letter but told me titration should be according to BNF, dose going up weekly as recommended. I told the doctor this and despite reading that in BNF in front of me, he said he needed to get a letter from the psych detailing this exactly.
Over the next couple of weeks, the psych team didn't receive GP's letter for a while but I got surgery to fax it over and check it was received. Then I heard nothing for another couple of weeks. I phone psych's office and they said that the psych wanted to discuss it on the phone with GP, but the GP I'd been referred to wasn't taking their calls or receiving them.
According to the surgery, the GP was on a month long sabbatical and wouldn't be back for another couple of weeks. So I asked if the matter could be referred to my normal GP who did actually know a bit more about me. I phoned the psych secretary and informed her and she got the psych to call my usual GP who had a conversation with him.
The psych office told me what was going on so I called the surgery asking if I could make an appointment. They told me that they'd asked the psychiatrist to follow up the conversation with a letter to confirm these points.
I called psych office and they were completely unaware that the GP surgery were waiting for this. The psych's secretary told me she'd pass the message onto the psych and get him to write a letter back as a matter of urgency.
This was last week and I called GP surgery - they still haven't heard anything and won't discuss the matter with me until they get the letter. Receptionist said there's been no action on my records since the conversation between psych and GP.
The psych office have been great, but I've tried calling them to find out if the letter's been sent and keep getting put through to a voicemail - no-one's called me back in a couple of days.
I'm at a loss. I'm starting to think that they're dragging their heels as much as possible to avoid prescribing concerta but there's nothing for me to get assertive about because they're always "waiting for more information." And it doesn't even look like the letter from the PCT is back either so I'm starting to think that'll be another delay.
I'm getting really disheartened though - am having a really bad time outside of this as have had 2 close family members die in the last year, leaving my mum on her own with recurring cancer who's about to have an op. Also, my daughter's having panic attacks taking her GCSE's with her own ADHD (she's on medikinet) and my job (which is always a little bit shaky due to my flakiness) is with a company undergoing a major restructure.
I'm overwhelmed with everything and just want to run away at the moment and I'm getting really upset about the GP's attitude.
Basically, I genuinely want to know if anyone thinks I'm being paranoid (I'm aware I'm not the most positive bunny at the moment) or whether it does sound like they're really being bloody-minded. If they are, does anyone have any suggestions for ways I can get this sped up a bit?
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Post by furiousfrog on May 10, 2013 10:11:24 GMT
oh, thank you! Is that neurotypical?
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Post by furiousfrog on May 10, 2013 8:14:36 GMT
I'm currently taking part in a pilot course in self management for ADHDers which is 2 hours a week for 12 weeks in a group, plus 3 individual sessions. Just out of curiosity, how did you get onto this? Is it a local thing? If so, whereabouts? Have my dx and am due to start medication, but to be honest, I have no idea on how to change things so I can live like a normal person. (as an aside, what do we call non add-ers? Normals? Muggles? non-adhd seems a bit of a mouthful!) Does this become easier with medication or did you find that the course was needed to start you off on the right path?
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Post by furiousfrog on Apr 26, 2013 15:24:12 GMT
Oops, got carried away there and forgot what I was replying for then!
I found that I don't even need to mention any disorder or medication or anything that's not 100% "normal".
If I get stressed out, or distracted or annoyed or start needing to move or fidget, I just tell people something like: "I've got the attention span of a goldfish and I can't get my head in it today". Everyone gets problems like that so most people will understand.
A couple of days, two of the guys were having a really annoying political discussion about 10ft away from me really loudly. After stewing and trying to ignore them for over 15 minutes, I actually snapped and said: "I need you both to please stop talking". They looked at me like I'd grown another head, but I just said jokingly "I'm sorry to snap but your political opinions are hurting my ears!" Everyone laughed and it sorted the problem.
I find that self-deprecating humour works wonders - telling people what's wrong with you can come across as "I'm a special snowflake" and people will start to treat you differently. Just tell people what problems you're having (it's even better if you've got a solution to the problem all prepared) and generally, people tend to be very helpful.
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Post by furiousfrog on Apr 26, 2013 15:17:42 GMT
Oh, sorry - I saw you mention headphones and just assumed.. my bad! Tbh, white noise always gave me a headache, but playing songs was too distracting. Movie soundtracks are ideal as they have variation and are pleasant to listen to, but they're background music so are designed to not be too distracting.
Don't know if this is useful, but my favourite soundtracks at the moment are Gladiator, Lord of the Rings and Portal/portal 2 (the video game).
I get lost in my own head a bit and start heroically laying out posters to "The Bridge of Khazad-dum". Not yet sure if it affects how they look at the end!!
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Post by furiousfrog on Apr 26, 2013 12:15:57 GMT
Hey there,
To be honest, I've just been formally diagnosed but my experience has been that there's no real need to tell your work formally.
My company has always known that I've had a terrible attention span (it's always been a bit of a joke) and I've made it clear when stuff distracts me.
Although I do web design and graphics work, I also answer the phone too. I've just been open about getting distracted by chatting and other people's conversation. So like DKL I use headphones - I plug them into my PC and play movie soundtracks - just loud enough to drown out idle chatter but I can still hear the phone ring and if anyone wants to talk to me.
I think they were a bit concerned at first, but after seeing that I can work much, much better and am not completely incommunicado, they're absolutely fine with it now.
Oddly enough, since mentioning to a few colleagues that I have adhd, I've had some really odd reactions - it's been awkward where people don't really believe in adhd and start looking at me like I'm going to expect some special dispensation. (Not everyone - a couple of closer colleagues were like: "well, we knew that anyway".)
So I'd say it's probably not worth mentioning unless you feel the need to. I just told them what I needed before the diagnosis and they were pretty accommodating. I think lots of people have quirks or eccentricities - as long as you demonstrate that what you need to work doesn't interfere or cause them a headache, 90% of people will be fine.
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Post by furiousfrog on Apr 26, 2013 12:02:41 GMT
Hi there,
I do graphic design for various different things - am more than happy to have a crack at this. Would it possible to get more info on what you're looking for? Is it worth PM'ing you?
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Post by furiousfrog on Nov 26, 2012 13:46:51 GMT
Hey guys,
I'm banging my head against a brick wall here. I got referred to iapt who were fairly useless but my GP keeps telling me to persevere as they can help me.
After the initial iapt "workshop" I heard nothing. Time passes...
I call them, they say I'm still in the list to see a therapist.
Hear nothing for a while, get depressed.
Last week I got a call to see a therapist on Wednesday. But I really, really can't be bothered now. I feel like I've opened myself up and laid my guts on the floor and people have just kicked them about and ultimately found me wanting. I'm really fed up with it.
I can't face going into yet another appointment with yet another well-meaning but ultimately useless rentagob who tells me I need to develop routines and become more organised.
Does anyone know if IAPT are able to refer? My GP says he can refer me to psych for borderline personality disorder, but I'm quite nice and generally sensible really and I don't like the idea of this label. If I get into a car accident or anything, will people automatically assume I'm somewhat lacking in mental stability?
Are IAPT ANY use or should I just hit my already stretched overdraft and get a private dx? Any advice REALLY welcome.
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Post by furiousfrog on Oct 2, 2012 20:00:19 GMT
Oh, and also - congratulations Shiny!
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Post by furiousfrog on Oct 2, 2012 19:59:35 GMT
Oh, btw - filled out the Conners 3 forms yesterday and am a bit worried about what they'll think, but I did laugh.
My DD gave a "very much" for being unable to wait her turn, then a few questions later said she was happy and content to wait in a queue.
And then got very indignant when I questioned that she thought she had a good attention for detail!
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Post by furiousfrog on Oct 2, 2012 19:57:30 GMT
Thank God! I thought it was just me! what, that replied to a poster, that wasnt the poster!!?? Great news Boo haha.... no! ;D[/quote] Ahhh...I... see... Oh well, at least I know I'm in good company!
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Post by furiousfrog on Oct 1, 2012 21:08:54 GMT
Oh why - what? Did I miss something? I replied to the right people, didn't I?
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Post by furiousfrog on Oct 1, 2012 8:27:55 GMT
Many bright children manage to get through school hiding their disability, but at enormous expense to themselves. However the challenges of A levels where more emphasis is on the student being able to organise their own learning, is a huge challenge to children with Adhd. This is a time when the wheel comes off for lots of young people with inattentive Adhd. There's a huge amount of information on this forum of adults who struggled through school only to find A levels/University was the time when, despite their enormous determination, this was the time when the "wheel came off"!! Don't let that happen to your daughter Annie, Thank you so much for this! This is exactly what I went through and I'm determined not to let history repeat itself. Anyway, had a bit of a turnaround with CAMHS now. We went to the last session prepared with reports, DSM-IV criteria and specific examples of how this had caused severe problems. Turns out we didn't need any of it. My daughter has this habit of being extremely stoic about things and refuses to complain in case people think she's weak. I told her that it was important for her to not brush this off and make her camhs worker aware of how all this stuff made her feel. So, after last time I think she took this to heart. The camhs worker took her in alone and we didn't see him for the whole session. She came up with a fantastic analogy that she gave him about her attention being like a pack of cards, constantly flicking in her head and sometimes she'd drop a card and it'd fall in the middle of the pack and she'd often find it impossible to find the card again. I was impressed at how well she'd managed to communicate this! After his session with her, I think he's now concerned about her memory and has given us Conners 3 tests to fill out. I'm a bit concerned about the teachers at her school though. She often sits quietly in class and drifts off, and in secondary school this often goes unnoticed, so I'm hoping that's not reflected in the conners. However, if they observe her instead, then this will demonstrate her issues. I'm just so angry that it's taken her entire school career to get this identified and now, time is really not on our side. Regardless, fingers crossed! Thank you for all the help and advice, I can't express just how helpful it's been!
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Post by furiousfrog on Oct 1, 2012 8:15:44 GMT
Update - my daughter had her assessment this week (by an ADHD specialist at our local CAMHS), and was given a provisional dx of 'mild to moderate ADHD'. The specialist was very swayed by her school reports which, although peppered with references to not concentrating, not listening, not acting on instructions, not considering her impact on others, etc, still showed pretty good academic results. Basically, the fact that she's super-bright is still acting against her - there's nothing 'mild' about her ADHD - but at least we now have a dx and an offer of a three-month trial of medication. Yay...I think. Great news Boo - am really pleased for you! I think dx can be a bit of a double-edged sword but at least you have options and you're not just left to struggle on alone - I do think that the system works against bright kids, if you're managing to keep your head above water then they tend to ignore the underlying misery this causes. My DD told me she'd thought that everyone else was super-disciplined in order to be able to do their work and she felt weak and stupid for not being able to do something that everyone else could. In actual fact, I'm really very proud of her that, despite her fairly severe attention problems, she's managing to apply herself and got done as much as she has done. Let me know how your DD gets on!
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Post by furiousfrog on Sept 20, 2012 14:50:50 GMT
Oh. I see. Yes, that would make sense - thanks..
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Post by furiousfrog on Sept 20, 2012 10:16:36 GMT
Sorry to interject, but what's ADHD-CT? Obviously can work out PI but can't seem to puzzle out some of the other acronyms.
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Post by furiousfrog on Sept 20, 2012 10:15:16 GMT
Thank you -the advice is hugely appreciated!
Have just had a look at the NICE guidelines and the DSM-IV criteria and I can't quite believe they've told me she doesn't really fit into an ADHD diagnosis.
She ticks every box for the inattentive subset and 4 out of 6 for the hyperactivity. I am worried about the ICD-10 criteria though as these seem to be concerned almost entirely with severe behavioural issues which has never been an issue since age 8.
What's your experience with the diagnostic criteria - what do people tend to use?
Will definitely take the DSM criteria with me though - I can provide recent and older specific examples of where she's reflected each of these points; is this overkill or would it be useful to do?
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Post by furiousfrog on Sept 19, 2012 20:00:10 GMT
Hi Boo,
It's a good idea and I haven't done this, no. I've always been a bit reticent about stuff like that - I think I come across a bit bolshy and opinionated and I'm worried about getting people's backs up by suggesting they're overlooking something.
Do you think this would be an acceptable thing to do? Any ideas on how I could introduce it without sounding overbearing? (sorry to ask more questions!)
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Post by furiousfrog on Sept 19, 2012 11:18:19 GMT
Right - long story short (back story below) - my daughter's camhs worker is suggesting things that don't seem to be helping her. When I said I thought she may have ADHD, he's been quite dismissive and instead told us it may be time management issues
Can anyone offer any advice on what evidence / information I can put forward or how to be slightly firmer about this without him thinking I'm a helicopter parent that's being manipulated by my own daughter (I suspect this may be too late though).
Longer back story for those who have the attention / inclination:
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Post by furiousfrog on Sept 13, 2012 10:00:40 GMT
Spok - me too - sent shivers down my spine and my internal reaction was something like "oh, eff off!" I lost interest after that, must admit and the rest of the talk was a bit of a blur. Wasn't helped by having some people there with serious issues who, in my opinion, shouldn't have been in a group setting but the whole thing was very generic and no assessment took place at all.
Sheena - really, really appreciate the support!
I keep questioning myself and whether I'm doing the right thing but I really feel like I can't carry on like this for the rest of my life: never being able to settle, never being happy and pretending to act like an adult (and worrying that any minute the whole facade's going to crumble and people will find out that I'm flakey and a fraud!)
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Post by furiousfrog on Sept 12, 2012 9:02:13 GMT
Quick update - went on well-being workshop with the iapt yesterday and it was pretty much useless for me. (I can't judge how effective it would be for the others though).
All the ways they suggested of dealing with avoidance issues, anxiety and stress were all along the lines of "graduated exposure to the situations by making lists, then sorting tasks in order of difficulties and then write a plan out and create a routine that you need to stick to religiously, then you should eventually feel better."
So in my case something akin to:
"I have a spider phobia but am also slightly worried about heights"
and the solution being:
"Here, climb up this spider-encrusted ladder and we'll help you deal with the heights issue."
So, back to the GP, but at least this time I know what to ask for, so thank you!
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Post by furiousfrog on Sept 12, 2012 8:50:20 GMT
Besides, strictly speaking, ADHD is a classification of your mental state; you don't have x y and z problems because you have ADHD, you have ADHD because you have x y and z problems. The aetiology of ADHD and ADHD are separate things. People often misunderstand that. ^this SO much. Thank you for explaining it in this way. Having a conversation with a sceptical family member, explaining that "It's not ADHD causing these problems, it's because someone has these problems that means its classed as ADHD - it's a term for the issues, nothing more." Got a hmmph, but no argument and he is now strangely more interested in how I'm getting on. So, baby steps.. but it's helped!
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Post by furiousfrog on Sept 7, 2012 14:52:48 GMT
Hi there,
Wanted to thank you for sharing - reading through I really feel for you and hope you get to a place where you feel good about yourself.
I wanted to ask a question generally but it was the comment about the over - analysis that really made me think. I don't know if anyone's experienced it, but do you worry that going through this diagnosis or even asking about it, feels like you're making excuses for yourself being lazy or undisciplined?
My family's always been very sceptical about the whole thing and I've always been told that I just need to sort my life out and get on with things or (most common) "Just get on and DO it!".
A couple of relatives have expressed the point of view to me that they think this is just a way of finding something else to blame instead of sorting myself out. My mum thankfully has stood up for me and said she's always known I had real difficulties, but..
a lot of the time I feel uneasy about looking for a diagnosis and that I'm being silly by doing this and it's unnecessary.
Is this a common reaction? I get all the problems described above as social situations but oddly, talking about this has made the social situations even worse! The self-questioning that frustration21 described has got worse and I can't tell if I'm doing the right thing or if I'm just completely neurotic?!
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Post by furiousfrog on Sept 6, 2012 22:16:01 GMT
Hi Spok,
Thanks for the advice, much appreciated. I don't know of any specialists I can ask to be referred to in this area unfortunately, but will go to the workshop and see what they suggest.
They've reassured me that it won't be a one-hit wonder but more of an initial assessment to determine anything that could be useful so I'll see if they know of anywhere I can be referred to.
Thanks again for your help.
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Post by furiousfrog on Sept 4, 2012 10:48:56 GMT
Hi All,
Not sure if this is the right place for this, so apologies if I've misposted. We're based in MK if anyone has any experience with this PCT and being diagnosed with ADHD?
My daughter & I have always struggled badly with concentration issues - but as she's very bright and not really disruptive, she's always flown under the radar. However, she's starting taking GCSE's and is crumbling at the moment and having meltdowns at home - can't sit through an exam without zoning out etc.
Her school are pretty useless - keep telling us she's not disruptive, therefore does not have ADHD but her panicking and total lack of interest in anything are really worrying me.
I thought that if I sought a diagnosis and treatment for myself, then I could perhaps help with suggestions and methods of coping but this has been problematic. I was referred to a volunteer counselling service that told me I had had a bad childhood (I haven't) and this was why I was anxious nowadays.
So, after giving up for a while, have been back to GP. He gave me a number for CAMS for my daughter and said to self-refer. Thankfully, my daughter has been allocated support through CAMs so one of us has some way forward.
He's also referred me to iapt (improving access to psychological therapies) who were a nightmare to get anything done and kept asking me to fill in GAD and PH9 forms.
Finally! Had a phone appt with iapt who said that they were only really in a position to help with psychological aspects of the adhd (anxiety and low self-esteem as a result) but that they could not help with the physiological aspects of adhd. I have a workshop with them next week, but they've told me that adhd treatment requires very specialised CBT and support that they are not able to provide.
Have gone back to GP who said that the pathway for treatment for adult ADHD was through the iapt and general mental health support. Reading this website it would seem to concur with his opinion.
He's said that in his opinion I have fairly severe attention problems but he cannot make the official diagnosis which needs to come from a specialist.
I've called the PCT for MK & Northants who've said my GP needs to refer me to a specialist. I said he had in as much as his guidelines told him where the provision was. They've just said to go back and if he can't find anything better he needs to call the healthcare foundation.
I don't want to keep bugging my doctor without further information as he's been so helpful - last time I was in his surgery for almost 40 minutes while he called various people.
So, (and I'm sorry for the essay) has anyone else been diagnosed recently in the north bucks / Milton Keynes area? What are the treatment / diagnosis pathways?
Any advice on who to see / what to say would be really, really appreciated!
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