Doctors appointment tomorrow

[Tally]

Am a bit nervous about seeing the doctor tomorrow. They don't let you register with an actual GP, just with the surgery, and I am seeing someone I haven't seen before. The one I saw before was not very nice.

 

First I hope to persuade him to sign my form for RDA confirming my diagnosis of Asperger's. I don't know if he will agree to it, because I think my records have got lost. The other GP thought I was born in the wrong year and said they were still trying to chase up my records from a place I have never lived, but didn't believe me when I told her I had never lived there and was older than she thought.

 

Second, I need to chase up my referral to the Chronic Fatigue clinic. I was just about starting to get some treatment before I moved house in June, and have now been without treatment for seven months. Even though I have been referred I have to start from the beginning and hope to actually get a diagnosis again so I can get treatment. Also, now that I have moved yet again I need to register with a new GP. The last GP I saw said I would still be allowed to see the same specialist from my new address, but I can't register with a new GP until the referral is complete, so I need to know how much longer it's going to be because I am effectively without a GP - not one I can get to when I am ill anyway.

 

Third, blood tests show I do not have coeliac disease and should start eating gluten again. I now have chronic diarrhoea and am weak and tired (more than usual) as a result . . . nearly fainted in the vet the other day, for example. Really want a second opinion on whether this really is a sign of good health.

 

All that in however long it is you are allowed now, I don't fancy my chances!

[Mumble]

If I have understood this correctly, your appointment is with a GP at your old practice, but a GP you haven't seen before. I hope this is correct - it is what I am basing my reply on, so if incorrect, feel free to ignore me (even if correct, feel free to ignore me!! )

 

Am a bit nervous about seeing the doctor tomorrow. They don't let you register with an actual GP, just with the surgery, and I am seeing someone I haven't seen before. The one I saw before was not very nice.

I know it's not easy, but try to remember that this is a different doctor so there is no reason you should have the same experience. Try to go in positively knowing why you are there and what you hope to achieve and be as open as possible.

 

First I hope to persuade him to sign my form for RDA confirming my diagnosis of Asperger's. I don't know if he will agree to it, because I think my records have got lost.

Can you take along a copy of (or part of) you dx report just in case there is a query?

 

The other GP thought I was born in the wrong year and said they were still trying to chase up my records from a place I have never lived, but didn't believe me when I told her I had never lived there and was older than she thought.

Hmm, yes, notes are a nightmare! I lost 12 years at the hospital a fortnight ago. Got them back again today - I think I preferred being 18 This really isn't something for the GPs to be doing and she was probably frustrated not to have the information she needed. It's really something for the admin team / medical secretary. I would write out the information they need - previous addresses, GP names and addresses, NHS number etc. and speak to the admin / secretary before your appointment (so go in early if possible) and explain that you ere aware there was an issue with tacking down some notes and you thought it might be helpful if they had your details all together so they could chase them up.

 

Second, I need to chase up my referral to the Chronic Fatigue clinic. I was just about starting to get some treatment before I moved house in June, and have now been without treatment for seven months. Even though I have been referred I have to start from the beginning and hope to actually get a diagnosis again so I can get treatment. Also, now that I have moved yet again I need to register with a new GP. The last GP I saw said I would still be allowed to see the same specialist from my new address, but I can't register with a new GP until the referral is complete, so I need to know how much longer it's going to be because I am effectively without a GP - not one I can get to when I am ill anyway.

Yes, you should still be allowed to see the same specialist, and they shouldn't have to re-refer. All that should be required is a change of your details on the hospital admin system. You should be able to arrange this by contacting them if you have a name, or your surgery should be able to do it / give a name. Are you within the same primary care trust? That would make it even easier, but not essential. You can register with a new GP at any time in the referral process and it shouldn't have an impact on the time the referral takes. You will just have to check when you go for the specialist appointment that everything has been updated so any notes get sent to the right GP. It is very important now that you have moved that you register with another GP. I don't know how far you moved, but as you note there is an issue with access if you are ill - and this would be particularly the case if you had to call an out of hours doctor to visit you at home.

 

Third, blood tests show I do not have coeliac disease and should start eating gluten again. I now have chronic diarrhoea and am weak and tired (more than usual) as a result . . . nearly fainted in the vet the other day, for example. Really want a second opinion on whether this really is a sign of good health.

Not something I know anything about, but I have a similar situation with something different. I would keep a diary over a suitable period of time detailing diet, symptoms etc. so you have something substantive to take to the GP for discussion. There could be other reasons/processes causing the same symptoms for instance.

 

All that in however long it is you are allowed now, I don't fancy my chances!

Hmm, yes. Do you just have a single appointment? I would try to prioritise your issues and maybe aim to get two covered. You could even say to the doctor that you wanted to talk about say the blood results but are aware he needs to see the next patient and would it be ok for you to make an appointment to com back and see him about that? Shows you're willing to discuss things and also makes sure he has a get out clause - or he may say, you can talk about it then, even.

 

[Kathryn]

Hope you've got a list with you of the things you need to talk about and take your time. The GP should give you as long as you need to discuss your problems - let him earn his fat salary.

 

Good luck. <'>

 

K x

[Tally]

I got my RDA form signed no problems.

 

He said I can register with a new GP and it won't affect my referral, so that is good.

 

I've left the rest for now, there doesn't seem any point if I am getting a new GP soon.

 

So it all went OK and I was panicking about nothing

[Teresa]

Glad it went ok Tally hope you get your referral to CF clinic soon. I hope you don't mind me asking but how does your

 

Chronic Fatigue effect you on a day to day basis?, only i was talking to a woman today at work who's Daughter aged 15

 

and DX with CF/ME a year ago, she told me she lost six months of school as she couldn't get out of bed, but now she's

 

back at school which is good, but suffering with panic and anxiety, mood swings and sensitivity to light and sound.

 

T's coming upto her 5th year now DX CF/ME and next week will be the first time she has seen CFS Nurse, not very good

 

support in my area at all. Teresa

[Kathryn]

That's good to hear Tally, glad it went well.

 

K x

[Tally]

I am lucky in a way I suppose, that it's not as severe as your friend's daughter and I am able to hold down a part time job. I did work full time for abour 2 years, but found it a huge struggle and took a lot of time off sick because relatively minor illnesses just took it out of me. It was a huge relief when I was able to go part time again, and enabled me to do things other than work and sleep.

 

I am basically tired most of the time and sleep a lot more than I used to and always feel like I am catching up from something days ago. Before I got ill I could work full time, go out a couple of evenings a week, and enjoy a cycle ride on my day off, nothing outrageous. Now I could not consider going out for the evening after a day at work. I can normally manage a big day out if I make sure I am well prepared beforehand, and have a day afterwards when I can sleep in and relax and recover. I can't cook a meal after work, so I cook extra on my days off and microwave something easy on my day off. Even having to stand up and stir something like scrambled egg or pasta is more than I can manage after work.

 

I do have some difficulty with sensitivity to sound, though it's hard to work out what of that is processing difficulties associated with ASD, and what is new. Anything that requires concentrating is very tiring - including driving or reading academic books or articles.