1st appt with rheumatologist

[harrigan]

I know I should be glad everything is moving quickly, but my GP only said last week he would refer me to a rheumatologist and I got a call this afternoon to attend clinic tomorrow!  I was thinking I would have weeks to wait...not sure what I should be asking / telling him.  There are so many various syptoms I'm worried it will bore him senseless to listen!  Any advice on the 1st appointment please?   

[Chana M]

Wow, that's fast!  Three cheers for the NHS, at least this time.

There are people here with much more experience than me and I'm sure they'll be posting lots of good advice.  What I've found useful is really basic stuff: 

- a list of symptoms divided by type eg pain, exhaustion, stiffness, dryness and/or by body part eg legs/arms/mouth/eyes

- some specifics regarding time of day things happen, whether they are daily or infrequent events, how long symptoms last

- reactions to meds, starting with positives and moving on to difficulties/side effects

Sometimes I've been thrown by the doctor's initial question.  What's the best answer to 'How are you today?' or 'What can I help you with today?'.  In theory open-ended questions are good but they can be difficult to answer.  Now I try to have a couple of things ready so that I don't mumble:  'I'm pleased to be here because I've had some new symptoms I'd like to tell you about.' or 'Thanks for seeing me because I'd like your advice about ...'

Don't rush.  I always do because I worry about taking up too much time - silly, I know! - but specialists are doing work they have chosen and that they love, so meeting you is a treat for them.  You certainly won't bore the doctor senseless - s/he will love your new array of symptoms albeit at an intellectual level.

One of the most useful things I read on these boards is to approach an appointment with one aim, or searching for the answer to one question.  I actually formulate the question for myself in my notebook even if it's just a basic question about reducing Prednisolone dose, or information about discussions different specialists have had about me.

Do let us know how it goes tomorrow.  You'll be in my thoughts

[peacefulstorm]

Hi there,

WOO HOO for getting in so soon! I go into the doctor each time with a list of what is happening and what I want him to help me understand or test...for me writing all of my questions and concerns down helps me a lot.  I dont get flustered and I dont forget to talk about something...most of the time, my doctor had gotten to where he just takes the paper reads it and then we discuss everything!

Good luck!
Cortnee'

[Pooh]

Wow, that was quick.  Chana gave you some excellent advise and I can't think of anything to add.  Having notes with you on what you want to tell the doctor and questions you would like answered is a great idea.  Along with anything that is ongoing, like a pain that can be ignored because it isn't to bad but annoying.  Sometimes it's these little things that ring bells.

Good Luck with this appointment and please let us know how it goes.  We will be thinking about you tomorrow. 

Hugs, Pooh

[pudmott]

Goodluck with the appt.

Def take a list of things that are happening for you and a list of questions. i always come out thinking darn should have asked that.

The only other thing is dont go in with the expectation that they are going to give you all the answers srtaight away. It takes a while for this to happen.

Goodluck and keep us posted


Pud

[BonusMom]

Impressive response on the rheumy appointment!  Glad that you're getting in so quickly.

I can't add to what's already been posted as far as what to expect, but wish you the very best.

Please share your experience with us afterwards.

[Scottietottie]

Hi 

I think Chana's answer said it all.

Symptoms diary - and they are likely to ask you how long certain symptoms have been going on for.

Any questions that you've thought of - write them down before you go and work through the list if necessary. Ask the same kind of questions as you've asked in here.
You could alsways ask him/her how many of their patients suffer from SjS. Some rheumies deal with more than others!

Take care - Scottie 

[eyeamdry]

mY RHEUMY (and she is a good one) has you fill out a small sheet at the beginning of every appointment and she asks what TWO items you want to discuss.  I thought this was sort of odd at first, but after a while, it makes sense to focus on a couple of things and not spread things too thin and you end up with no real answers.  Lucy

[Patze]

Hi Harrigan,

Congratulations!!  Wahoo!  l'll keep the fingers crossed and hope that this doctor turns out to be really good for you!

Take care -

Patze

[harrigan]

Thanks everyone for the advice - I didn't get chance to ask / say much as he appears to be a man of few words.  After looking at my eyes/hands/feet/neck he wrote up for loads more blood tests, said he was thinking Sjogrens and said I would get an appointment in the post for 4 weeks time to discuss results.  I asked if he thought the symptoms were related and he just said that's why he was ordering the tests!  He has recommended the GP prescribe eyedrops.  Oh well, guess that's it for a while then... Feel a bit flat really.   

[fluffiebunnie]

Thanks everyone for the advice - I didn't get chance to ask / say much as he appears to be a man of few words.  After looking at my eyes/hands/feet/neck he wrote up for loads more blood tests, said he was thinking Sjogrens and said I would get an appointment in the post for 4 weeks time to discuss results.  I asked if he thought the symptoms were related and he just said that's why he was ordering the tests!  He has recommended the GP prescribe eyedrops.  Oh well, guess that's it for a while then... Feel a bit flat really.   

Sounds like my first rheum. appointment... a bit of an anticlimax really....   he did the same.. look at hands and feet and asked for more blood tests....  my next appointment has come through and it is two months away so have to wait longer for my results....

And no presription for anything... even though I told him I was having to buy all  the OTC stuff.

But I suppose at least it is the first step of the ladder to a diagnosis.

[harrigan]

Yeah Fluff, you're right!  Been back in the driving seat today with a view to back to school on Monday so I'm v achey and disgruntled.  Must be time for a bath and early night.   

[Scottietottie]

Hi there 

I'm sorry the visit was such an anti climax. I've had a few of them and it's so annoying when you have questions and are all 'buoyed' up for the appointment.

He's probably totally unwilling to commit himself to anything but the most tentative dx before seeing the test results. Hopefully he'll be better the next time you see him but I'm sure it will feel like a long four weeks.

I hope the eyedrops help a bit and OTC painkillers and sugar free candies can help too. Roll on next month!

Take care - Scottie 

[Chana M]

Hi Ailsa

It must feel like an anticlimax after all that preparation.  Did you take your lovingly prepared notebook with symptoms and dates?  

However ... I suppose the doctor did all the right things.  He actually examined you, which surprisingly enough some doctors fail to do, and ordered blood tests.  A tentative diagnosis is more than a lot of people get, and it's interesting that he was willing to suggest one before the test results.

The symptom diary is worth continuing with, even if the doctor didn't listen much today.  SjS is such an individual condition so details of the way yours develops will give the doctor useful information in the future.  That's assuming his listening skills improve!

Enjoy your bath and early night

[Epson]

Any doctor who would give a definite dx without blood work would be irresponsible.  I know it is hard to wait for the results, but at least your on a path that should lead you to a dx and medication to help you with your symptoms.