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Post by Deleted on Apr 26, 2012 17:19:29 GMT
After 2 attempts with NHS psychs I'm going private and my appointment is tomorrow! I promised myself I would write things down but, at 54 yrs old I have so many write. I've wasted the whole day worrying about it and now I just feel sick. Where the hec am I going to start tomorrow? The beginning is so far back I remember little. I'm told he's a really nice man (Dr Chris Taylor), but the other NHS docs I saw wouldn't let me refer to my notes anyway and kept putting words in my mouth. I had intended to write this yesterday to give people time to reply and I know there might not be much order to what I'm writing but most of you are probably quite good at deciphering what people are talking about! I've read so many things on here that I would have written if I could; do you think if I printed some off to take with me it would be ok? They might even prompt me on other things to say. There's no doubt I've got ADD, I think I might be quite a bad case but, perhaps we all feel that. I really am worried sick. It could be, potentially, the biggest day of my life. I know that sounds dramatic but it is true. Like many of us on here I've been through a hec of a lot and survived but, only just. Won't know how to cope if I don't get the help I'm hoping for tomorrow. After all these years I've finally found the answer to my life and it's all so clear in my head, I'm just frightened I won't be able to get it out of my head. I'm not even going to read this back as I think I've been rambling!
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Post by tomas on Apr 26, 2012 17:57:15 GMT
Hi. Good luck for tomorrow. I understand what you mean in that this is a major step. You're effectively letting a stranger delve into personal aspects of your life. It wouldn't hurt to take all you want to say or refer to with you. He will have heard a lot of it before and I think you'll find no shortage of things to say. I was scared for mine which was NHS only and I felt like I was in a situation where I was effectively trying to convince him I have it and concerned that I would say something that took me to some other diagnosis. All went well. I took a million notes with me and only referred to a couple. His questions I could give answers aplenty off the top of my head.
There's a useful thread on the forum about what to expect from an appointment no doubt you will have seen that. Also you're paying for this privilege so a better service and reception from him could be expected. I'm no expert but if you go prepared as you intend that will also show you're serious and provide factual account of what you know and want him to understand.
I wouldn't expect you to come off worse. It'll feel a bit probing but don't get defensive. I had an hour appointment for mine and that hour flew by. Maybe write yourself a brief agenda of points you want to raise. Your nerves about tomorrow I completely understand and I hope all goes well. With mine I felt defensive all way through as I had come for A skeptical GP rejection a couple of times to being referred eventually.
Mine listened, asked a lot and made a lot of notes. I'm sure you'll go prepared worse is you don't use it or need it but the info he needs he can get from his questions. Relax a little and let me say this. Look forward to tomorrow. You're paying for someone to listen, understand and decide. And from what you say above I think it would be apparent to him.
Be prepared to discuss medication and possibly therapy routes. There's a wealth of info on here to read. Would you be happy being prescribed methylphenidate for instance?
You may come away tomorrow with a weight lifted off your mind. It's a life changing experience as finally there are almost official explanations for aspects of your life that jump out as ADHD related. This will go well for you and I think after tomorrow you will feel de stressed and looking forward to a new phase for you and one that I say again, you're paying for. Get your money's worth and good luck to you. I'm typing this on phone and could say a lot more but I think others will well wish with better advice but do not stress yourself further. Do look forward to it and I hope this post doesn't seem clueless or patronising. I wish you good luck and all thr best for tomorrow. T.
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Post by Deleted on Apr 26, 2012 18:05:25 GMT
Thanks tomas, for taking the time to write all that. It certainly doesn't sound clueless or patronising, it helps a lot (especially reminding me I'm paying for it!) and it's very kind. I'm going to read it again before I go in the morning! I'll let you know how it goes. PS I'm really hoping they'll give me meds.
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Post by tomas on Apr 26, 2012 18:36:41 GMT
Hi I'm pro-med. Let me say this. I really wanted Ritalin. In ADHD research I started reading about the wonders of this drug. Then after a burst of change after diagnosis things settled. And I realised hang on the meds not changed much! I'm sure you won't but don't rely on them I think I did then I started to look into things about myself. Post - appt I suddenly had a new outlook. I could attribute behaviours and events to ADHD not to blame for their happening but suddenly answers were there what were previously assumptions. I went 33 years knowing something made me different. Got diagnosed. Them afterward could kinda expect and foresee some ADHD behaviours and spot them when happening. Six months on and sometimes I could wear a dunce hat one day and take it off to reveal Einstein hair style the next. Ritalin didn't do what I fully wanted. I thought it would solve a lot more but that comes down to me. It'll always be there. For you maybe some of that rings true or will make sense over time. But you really want the meds and you're prob gonna get them. But what then?
Step by step. I'm 6 months in and a newbie here. But your original message reminds me so much of my feelings at the time. With my gp I might as well be sat there reporting emotional trauma from being abducted by aliens. I think he thought I just wanted the meds. Regarding the meds, let him come to that topic. He may bring it up by asking what you know about them already. It will surely feature in the appt. I wanted them and was scared I'd put him off by honestly telling him what I read and had come to know.
The fact you have all that on your mind from initial message above, shows you have enough ammo to fire at him if necessary. Truthful factual ammo. You'll do great and won't be say there without things to say. De stress, do it! A lot rides on tomorrow but all for positive reasons. You've come this far and tomorrow changes everything. Hell, tomorrow you may even be loving your Ritalin debut. I'll never forget mine I ended up doing all sorts. Like non stop housework between checking my eyes in the mirror ha ha.
Oh yeah also one other thing and not to be presumptious to the outcome tomorrow but the day I got my first prescription I had to drive to three or four chemists to find one that stocks methylphenidate! That's one other random thing. Sometimes I find they don't keep it and have to order it obv it's a controlled drug. I'm in south west England and here in my city I always have to wait a day or two! So I know this is random but if prescribed maybe phone chemist to see if it's in stock. Probably irelevant but I paid parking twice and got eyebrow raised reactions from daft pharmacists ll I was trying to do was cash in prescription! At chemist four, I found one who had a partial supply and I came out to my car with a smile like that gollum character when he gets the ring in lord of thr ring films! I'll never forget that day. The high of having my diagnosis agreed and the low of having to drive around all stressed in work time to find someone with stock!
Good luck!
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Post by Deleted on Apr 26, 2012 19:06:15 GMT
Thanks SO much for this tomas-it's lovely and reassuring to read! And again, I'll be re reading it in the morning. I wish I could say more in reply as it really is a big help to read, also hearing from someone who remembers exactly what it felt like. I hope I can write as much as that after tomorrow! I'm going to eat the rest of my family sized trifle (see post 'Trifle!'), take a sleeping pill and knock myself out. Thanks again, you've been great!
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Post by tomas on Apr 26, 2012 19:32:08 GMT
No thanks necessary I've only shared my experience. I just read it back oops I wrote a lot it should be me thanking you for reading
I'll check other thread in a mo. also time taken to write is no loss for me I work away from home during the week and all I plan to do tonight is ready food for lunch, iron clothes for work and proceed with reading a book! Such is the life.
Sleep well! Hope all goes well. Also one thing I just thought is to spend a brief moment explaining the crap service you have had from previous appointments to him. Firstly you shouldn't have been put in a situation that through the inconsistent and poor service you've received that you've had to pay for someone to take an approach the others should have taken. You pay your national insurance so it pisses me off you've had to go private. Secondly let's be British here. Ok he's a medical professional but if it goes similarly to your previous appointments don't take no shit woman! You are not paying to be fobbed off tomorrow so you go in there and give him it all! You get your money's worth! I'll check back tomorrow. Take care!
Edit naughty word removed. Byeeee
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Post by Deleted on Apr 26, 2012 19:38:07 GMT
Hahaha! Wise words PS 'ready food for lunch, iron clothes for work and proceed with reading a book!' How do you do that?!
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Post by tomas on Apr 26, 2012 19:56:19 GMT
Chores dammit thats how! Also knowing that every day if I don't do it the night before, I'm screwed for getting in on time the morning after. Something I learned about me post diagnosis, I'm always always always chasing time. One boring but minor set of tasks to incorporate into an evening to eliminate stresses the morning after. Also I'll have you know that men are very domesticated animals indeed. We are toilet trained too and come in all shapes colours and sizes. We have various uses. This one needs a home Ps book reading, lemme say I'm not a regular reader and maybe I shouldn't tell you this and I'm not boasting but I'm trialling if Ritalin aids me with actually reading and remembering the book I intend to finish that I've never managed in years. And Ms Carey, well the initial results are impressive for the Ritalin assistance and beyond possible placebo effect. To the point where I think, bloody hell , it feels normal to be reading a book. I can't even normally read a newspaper! I get two three pages in and sod it, straight to the footie back pages. Bring on Friday. No, bring on Friday evening. Then for two days , poxy chores can kiss my back side! I hate chores! Long live the weekend and all who sail in her. Or something.
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Post by Notlonelyinacrowdnow on Apr 26, 2012 21:24:26 GMT
Good luck I'm sure you will get the Diagnosis & support .. I am still waiting but it's good to hear when someone gets the Green Light gives the rest of us Hope xxx
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Post by 16stonepig on Apr 27, 2012 14:13:23 GMT
Is anyone else really excited to find out how this went? I know I am!
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Post by Deleted on Apr 27, 2012 20:30:53 GMT
Yes! Yes! YEEEEEEEESSSSSS!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!! got the diagnoses AND the meds!!!!
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Post by Notlonelyinacrowdnow on Apr 27, 2012 21:19:15 GMT
Fabulous so pleased for you.. Been waiting to hear how you got on.. Did you go Private and if so how much was it .. Xx
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Post by 16stonepig on Apr 27, 2012 22:39:38 GMT
Very pleased for you. Especially since I have exactly the same doubts and worries as you. Whenever you feel like it, please let us know how the experience was for you
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Post by Deleted on Apr 28, 2012 6:48:47 GMT
Can't wait to tell you but just got up with brain in the clouds!! Gonna try the meds when i've come round a bit. Promise to give all details today
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Post by Notlonelyinacrowdnow on Apr 28, 2012 7:12:39 GMT
Great xx
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Post by Deleted on Apr 28, 2012 13:54:49 GMT
Im so happy for you ! it gives me hope to hear this. Where abouts is the clinic ? I’m currently thinking of going with dr sally Cubin. Many have recommended her on here but it is quite far from me so maybe i can consider the place you went to ?
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Post by Deleted on Apr 28, 2012 16:29:56 GMT
only just caught up with everything but I am so glad you got the diagnosis and meds. I was sceptical about meds but my consultant said to start them straight away and then take each day at a atime. I am 4 weeks in and the change i have already seen has been amazing! I am even keeping my husband calm lol!! You are now about to start on the next part of your journey which will include elation, relief, uncertainty, anger, sadness, confidence and happiness! I have felt all of those in the last 4 weeks (thankfully the anger and sadness feelings were on the basis that it took so long to get here!). I am enjoying my life, I have a new sense of energy and confidence in what I can do and I love it! All the best x
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Post by tomas on Apr 30, 2012 18:56:49 GMT
Hi Carey Well done on your news I hope now that's a spring board for the future. You had a lot riding on it. Good one, glad you got what you wanted.
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Post by Deleted on May 9, 2012 20:39:13 GMT
So sorry everyone for such a delay in reporting back; it's only tonight that I've felt I could start writing, but I feel awful that someone else might have benefitted from my experience, and wished I could have done this a week ago. Well, it went GREAT!! I hadn't written anything down and as I'd said, couldn't think where I would start when I got there so, right at the last minute I quickly took a load of photos, on my mobile, of my little studio flat which showed my circular file (piles of paper starting at one end and going round the flat), boxes everywhere and an obsticle course to my armchair. When I got on the train I managed to scribble some notes; these were in no order at all, ranging from thoughts in my head, what people had said to me over the years (like 'everything you do goes wrong') to the uproar I would cause in a uni lecture when I asked a question that someone else had just asked and it had already been discussed and answered! At the most I wrote just over a page. By the time I got there (only an hour early!) everything hurt because of the stress and I was shattered. It was a lovely place, very calm and peaceful. The psychiatrist, Dr Chris Taylor, was able to see me straight away at 2pm (my appointment was for 3pm), but he explained that if his 2.30 app. turned up we would have to have a half hour break; it later dawned on me that this man really did know his stuff - he was taking into account someone with ADD may or may not turn up due to a big variety of reasons. Anyway, we had the break. He initially asked a lot of questions about my family, even their names. After the short break I was able to tell him that I was frightened I wouldn't remember to tell him everything and he said not to worry, we were doing fine and he would just keep asking the questions. I very quickly felt at ease with this man and was able to respond and just be myself. I realised some of my answers were chaotic and off track, but it didn't matter at all. The standard questionare was filled in last and it seemed a mere formality by then and was actually quite a giggle as it really confirmed things. After the best part of 2hrs in total he said 'well, not only do you have ADD now you most certainly had ADHD through childhood'. He also said he detected a small degree of Autism. He then explained about the treatment options (I think he thought I might be opposed to meds), I had all on not to say just give me the meds! He wrote out a prescription for ritalin (or that name beginning with meth..) and asked me to go back in a month. I restrained myself from hugging him madly, thanked him very much and shook his hand. On my way back to the station in Leeds I tried two big 'Boots' stores and the second one had the meds in......more to follow when I've had a quick break
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Post by tomas on May 9, 2012 20:58:00 GMT
Hi Carey I remember your post.
Well done girl and I'm delighted this went well for you. Welcome Ms Carey... To the rest of your life. Life, part II.
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Post by Deleted on May 9, 2012 21:44:54 GMT
Ok, I'm back again . All this happened on Friday 27 April. The next day I started the meds; I was given 4 weeks supply - 1st week: 5mg twice daily, 2nd week: 10mg twice daily, 3rd & 4th weeks will be 20mg twice daily, then I go back to Dr Taylor to assess how it's going. After that he will then write to my GP regarding 'shared care' and the meds should then be on the NHS. The 1st time I took a dose I waited half an hour, trying not to think about it, when I suddenly realised a lovely calm feeling had come over me. I was so worn out and aching from the previous day that all I could do was sit there, but it was ok, I could sit there if I wanted, it didn't matter and I didn't feel guilty or worried. The biggest thing I noticed that first day was that the fear had gone; that feeling that I'd lived with for years just melted away and I felt calm. The 1st week was amazing! I was so in control! Monday morning at 8.30 I was on the phone sorting out the NHS psychiatrist that one of my sons is seeing and getting both sons an appointment with the GP to get them referred to Dr Taylor. I've told them (26yr old twins) they will both get treatment within the month. I'm on a mission now! I had occasional feelings of slight car sickness, but not nausia, and very slight headaches but both these have now gone. This is the first time I've been able to actually sit and write something, but everything else is getting done. I'm towards the end of my second week now and it's just getting better! I haven't tackled my backload of uni work yet and still feel quite overwhelmed by the amount I have to catch up before the main exam on 28 May, but I am starting to feel I might be able to look at it soon (I really hope so!). Gemma21, whereabouts do you live? Dr Taylor is at The Cygnate hospital, Harrogate and The Priory hospital, Leeds. I couldn't recommend him enough. If you've got ADD he will see it. I really hope I'm not too late giving you this information and that you can get to see him. Thanks very much to all of you that replied to this post. It helped a great deal to feel I wasn't on my own. A particular thanks to tomas, you said a lot of very meaningful things which were such a help, before and after the diagnoses and - 'Welcome Ms Carey... To the rest of your life. Life, part II.' That's exactly how I feel!!!
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Post by tomas on May 9, 2012 22:58:52 GMT
Hi Carey. I hope your journey to discovering more about yourself, ADHD, and the "well what now?" is good, keep up that positivity. Everyone's in a similar boat on this site , have you checked support groups in your area from the meetings threads? I'm sure you'll want more time with the inner journey / discovery first but you may find something in your area to suit you and your lads.
Your description of the Ritalin experiences for your debuts on meds are familiar indeed! You take care! The way I see it is better late than never, it's a massive step that you've taken and now go back out there, have full confidence in yourself and don't feel any disadvantage. Whilst its an effing burden, it's simultaneously a gift. This gift, you, I hundreds of people on this site share so you be proud of that too , speak soon Ms C.
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Post by nasir on May 10, 2012 8:16:44 GMT
Hi Carey, I live near Leeds and have been referred to the Wakefield clinic but the waiting is very long. I've been waiting two months so far and have messed up many assignments and I have exams next week that I just can't revise for. How long is the wait with Dr Taylor?
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Post by 16stonepig on May 10, 2012 11:13:52 GMT
Carey, thanks for writing this - it's great to hear some good news, and it's getting me excited for my appointment tomorrow. Keep up the updates
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Post by Deleted on May 10, 2012 12:29:14 GMT
I changed clinic on Tuesday - got myself all wound up all over again (diagnosed twice, lotsa fights with consultant psychiatrists under my belt). I should have known better, they know what they're doing (adhd specialists) and if you've got it they'll find it. If you go along and make a mess of it...guess what? They look for it! I sat in on a diagnosis a couple of weeks ago and the psychiatrist let the patient ramble on and get flustered and confused. I thought it wasn't going anywhere but the confused rambling told the psych an awful lot both in the content and the way it was delivered - the psych barely had to say anything. Cunning. In my own case...I went in nervous and then, when I found I was amongst 'friends', let myself go a bit - rambling, squirming and tapping my pen and feet. I ended up having a good conversation with the staff about my experiences and quite enjoyed myself. Try not to get too nervous, it doesn't hurt at all
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Post by Deleted on May 10, 2012 14:36:48 GMT
nasir, I rang The Priory in Leeds yesterday, enquiring about an appointment for my son, the usual waiting time seems to be about 2 weeks (he's on holiday soon, so you would probably get an appointment at the beginning of June ish, if you were referred say in the next week or so. He is at The Priory in Leeds (near Rounday Park) or The Cygnate hospital in Harrogate. I have had an exam and essay deferred till August due to 'mitigating circumstances'; all you need to do is fill in the 'mit. circ.' form, listing all essays, exams etc., don't be worried about asking for deferrments or extensions ( I asked for the longest dates possible). Ask your GP to write a letter for you addressed 'To whom it may concern', saying you are being referred to an ADHA specialist, but get the form in first don't wait for the letter, you can hand that in after. Make sure you get something deferred and take some pressure off. Also, if you haven't already, go and speak to your 'Disability Tutor', every dept., at uni has one, they can advise and should be able to help liase with your tutors. I wish you the very best of luck, I know where you're at!
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Post by nasir on May 10, 2012 19:05:53 GMT
Hi Carey, thanks for the reply.
I have already deferred my dissertation until the next year. I definitely want to take my exams in the summer.
I already have been classed as 'Disabled' at uni because my doctor already sent a letter listing my various mental disabilities. I will try and see my disability advisor tomorrow.
Two weeks for the wait time? If only I knew this in February... I work near Roundhay so thats a perfect place.
I will ring the Priory tomorrow and let you know how I get on.
Nasir
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hopeful
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Post by hopeful on May 11, 2012 12:53:55 GMT
Hi Carey,
Thanks so much for taking the time to post all the information you have.
Can I ask, how did you make out with the proving it originated in childhood? I only ask as I am not sure I will be able to prove it apart from my own anecdotal evidence.
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Post by claudhopper on May 11, 2012 14:08:52 GMT
~What sort of cost is it over all?
I'm wondering if going private works out cost effective. Waiting for the NHS to get their act together is costing me life and earning potential. Perhaps going private will be financially beneficial as well as in terms of life / happiness etc
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hopeful
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Post by hopeful on May 11, 2012 15:14:42 GMT
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