my first appointment is here hooray! hooray! - LUPUS UK


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my first appointment is here hooray! hooray!


got my first app to see rhuemy tomorrow not expecting miracles like hi carol this is what you got but it's the beginning of finding out what's occuring with my body.must say i am a little nervous/anxious probably won't get much sleep tonight.

17 Replies

The best of luck for tomorrow, try not to be too nervous, it's a lot of questions, blood tests, weight taken and perhaps some x-rays. As this is your first appointment you will see the specialist proper, so make sure you tell them all your symptoms even if you write a crib sheet on the palm of your hand. Just remember be truthful, if it hurts like hell then say so, not 'it's a little uncomfortable'!!

The very best, let us know how you get on.

PS It took six months from 1st appointment for my diagnosis.

I was lucky doc pushed mine through as urgent so been 4 months.I have a diary to take with me I've only been keeping it since Jan as suggested by someone on here thankfully.can't believe you know only waited 6 months for diagnosis that's great,hope miner's is quick too.I just hope not lupus but no matter what I need to know ty for reply kathih

Good luck for tomorrow. I hope it goes well and you get some answers.

Ty grannyjogger x

Good luck! My diagnosis was 2 weeks after first appointment, probably because I have brought with me every little test and X-ray I have already done with the GP for the individual symptoms that he was trying to treat. All the rheumatologist had to do is repeat bloods, have a quick look overall and hand me a prescription for Prednisolone to try and see if it improves the symptoms (which it did from the third day of taking them).

Bring as much material with you as you can, previous test results, I mean. And a chronology of how your symptoms developed, the doctor will want to understand the trend of that illness and speed of development. Also likely triggers, so try and remember if each symptom was in any way connected to stress, medication, hormonal, etc.

I know it sounds like you're doing his job but he won't be able to diagnose without your help, you are the one feeling it.

Good luck!

Ty purpletopi have a diary but that was really useful as I have my own theories wasn't sure if I should mention them but now I will x

pattismith in reply to Purpletop

Excellent comment, if only all patients received that kind of advice we would all be better off!l have learnt the hard way that the only way to get things done is to educate yourself as much as you can, that way you have a chance if being listened to, keep up the good work . : )

good luck, purple top is bang on the more info you can provide the better, especially if lucky enough to have the test results with you, another usefull/ essential is the illness diary, because this damd illness is so weird its easy to forget symptoms. good luck once again.

Great advice, l have learnt the hard way and have educated myself and always take a long list to my appts with my wonderful patient, understanding and very knowledgeable Renal consultant. Knowledge is POWER ! Keep up with all your good tips. : )

Thinking of you, & hoping it goes well with your appointment. X

Well it was as useful as a wet paper bag.wasn't interested in anything really and hasn't a clue why I get muscle pain and never really had time to discuss any other symptoms or diary.he looked at my rash and said I have to go to dermatology, sent me for blood test,said oestoarthritis and see you in 4 months.all I left there with was a headache and the feeling I should be going to the hypercondraic clinic.I didn't expect anything else really so why am I rreally upset,never mind I,lol get over it,at least he never said lupus eh! Peeps,well good luck and take care girls and boys x

What kind of specialist did you go to see, and what did you tell him ? :)

a rhuematologist,i explained about rash and when i first had it,never really got a chance to say anymore,not like me i know but i really didn't know what to expect it bieng my first app but i will be ready next time and he might leave feeling the way i did when i left his office x

Well done thats the right attitude to have, you will see if your positive and learn about your condition, the Dr will see that and treat you with more respect, hope l helped : )

o letslaugh i feel for you, i too had the same experience when i saw my rhuemmy for the first time. please dont give up, keep writing that symtom diary ready for your next appt (i dont see my rhuemmy every appt,i also see her nurse) and one of them will listen to you. x

Oh poor you, it's so disappointing when you are rushed through an appointment and not listened to. The thing is we wait so long for appointments and hold out so much hope that it is a real let down when we are not heard.

If any consultants view this site, then please take note, these appt's are really important to us, and it would be good to be listened to.

pattismith in reply to Slowmo

Its their job to look after us, we pay their wages at the end of the day, we should not be made to feel we are taking up too much of their time , thats what THEY ARE THERE FOR ! Unfortunately sometimes we have to insist on being listened to , l am very fortunate that my Renal Consultant is an amazing, kind patient and very knowledgeable specialist , everybody should have one like him ! : )

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