Pocket duties please - First Rheumy Appt

Toots

Hey all x

Finally have my first rheumy appointment date through - Tuesday 10th December. I'll be on my own as OH isn't coming home till 17th, so would be grateful for hand-holding if you're free Unfortunately I have to be there for 8.45am, which means travelling across the city in rush hour. Fun, not!

I thought it might be helpful to other newbies out there who are still awaiting their first consultation to let you know what happens - although I know there may be variation depending on country/region hopefully you'll find it helpful. It's been many years since the first appointment for many of the regulars here, so hoping it's useful to some of you.

First off, I got a nice thick envelope through from the hospital. It contains:

NHS Going to Hospital Guide
(General hospital info relating to my particular area which is Edinburgh)

Getting to (The Western General Hospital)
(Brochure on how to get there, local transport location of rheumatology dpt)

NHS Help us to treat You
(leaflet on contacting hospital/gp, ensure changes of address/telephone number are communicated, or if you can't make appointment etc)

NHS (Scottish) Ambulance Service
(flyer on contacting the amublance service for patient transport)

NHS (Lothian) Self Check-in for Outpatients
(leaflet explaining how to use self check-in at rheumatology dpt - probably much the same as used in my local gp office and therefore likely to be common to much of the UK)

Also included, fairly obviously I suppose, is an Outpatient Appointment Letter detailing the name of the Rheumatologist I will be seeing, with date and time of appointment.

The letter asks that I arrive 15 minutes before the appointment to have 'baseline evaluations' carried out. It says that while they try to keep the time spent in hospital to a minimum, I am advised to allow 2 hours for my initial visit. So I am assuming other tests will be done, perhaps ultrasound or xrays.

Also asked to take a urine sample. The letter is specific about the urine sample not being the first urine pass of the morning but instead being the second after having consumed plenty to drink.

As my hospital is also a teaching hospital, they also mention that students may be present but that you can request they not be if you wish. (I personally have no issues with this at all, but that will be entirely up to the individual.)

Finally there is a Rheumatology Questionnaire which asks for the following information:

Name
Address
DOB
Telephone Number
GP Details
Occupation
Past Medical/Surgical History (details of previous operations or serious illnesses)

Family History -
Does anyone in your family have arthritis (if yes, relationship to you and type of arthritis)
Does anyone in your family have psoriasis ( if yes, relationship to you)

Current Medications being taken (name of med and dosage)

Allergies to any Medications (if yes, details)

Social History -
Do you smoke
If no have you smoked in the past
What is your average weekly alcohol intake

Once completed, the form should (obviously) be taken with you to your appointment.

I'll update again once I've had my appointment, again to hopefully help the newbies understand what (might) take place.

Hugs to you all! x

mig

Good luck with your app ,will be up early for pocket duties. Mig

dreamdaisy

Wow, I don't remember any information like arriving on my doorstep but seeing as how my first appointment was sometime in 2000 I am not surprised. I will be there, promise. I'll bring my usual stuff (strawberries and champagne) is that OK? DD

Kittkat

Good luck Hope all goes well! x

DebbieT

That's absolutely brilliant huni

Weirdly I asked you on my thread if ud heard anything from them yet!!Lol Maybe my pineal gland (3rd eye) cyst is actually starting to work

I'll be in ure pocket holding ure hand but can I ask a favour please? Don't stick the urine sample in ure coat pocket!!

Great news & a brilliantly informative post.

Woo Hoo Xxx xxX

villier

Wow that is some information you got through never had anything like that before, thank you for sharing it with us toots. I certainly will be in your pocket................looks like turning into another pocket party yippee at least I will be awake this time. As DD is supplying the champagne and strawberries, I will make some millionaire shortbread which I have managed to make one handed, oh I think I have some cassis kicking around will bring that along in case anyone wants kir royal, see you soon............Marie xx

Boomer13

I'll be there too, Toots. Glad it's finally happening. xxAnna

thistlegirl

Hi, that's my hospital too!!
Warning if you are taking your car get there early, I always give an extra 30 mins for the wait to get into the car park, though you should be ok being so early. If you ever have an afternoon appointment beware visiting starts at 2pm and parking is non existent from then on.

It is a lovely clinic staff wise you may get xrays done on the day but ultrasound would be a referral I think.

I will be in your pocket on Tuesday, I hope it goes well.

jenny

barbara12

Hi toots..its good of you to share this like you say people that are new to all this can feel quite scared..please dont forget to take a list of any questions you might have..and a list of anything you think is relevant..good luck and I will be on holding hand duties

stickywicket

Count me in for pocket duties, Toots. Yes, all hospitals will do things slightly differently but you have provided a very good, overall, picture for newbies. I'll certainly try to refer others to this thread in future.

Toots

Thank you Mig, sorry to get you up so early!

Thank you DD, strawberries and champers would be just the ticket! Your comment is exactly the reason I figured sharing as much as possible would be helpful, things change over the years and while I know there will be variation from hospital to hospital, I thought it might help those yet to get to this point. You have all been so incredibly patient, helpful and supportive, I'd live to give some of that back to the newbs at what can be a really scary time.

Thank you Kittkat!

Thank you Debbie! Looks like that 3rd eye could be useful after all
And I promise not to put samples of anything in my pockets!

Thank you Marie! Yum, one-handed-homemade-millionaire-shortbread sounds delicious, so please feel free to bring it along! Don't think I've ever had kir royal, so this will be an interesting pocket party!

Thank you Anna! You've been a sweetheart, I hope you're resting today, I'm not sure how my new rheumy will react if he knows I have a broken Boomer in my pocket xxx

Thank you Jenny! *waves out the window in a random direction* Really helpful info, so thanks for that. Dad had offered to drive me over but I've also had an offer from my cousin who works at the Western. I'm thinking that would be the most sensible thing, only she starts at 8am - if nothing else, I won't be late ;-) I figured they'd have their own ultrasound and xray staff there, but wasn't really expecting to have it all done on the day. As far as I can tell, I think xrays would be quite useless, but I can't figure out how I could possibly spend 2 hours there without something of the like.

Thank you Barbara! I have a notebook with my history so far with this particular journey and most of my questions have been answered here, but I need to sit and think if there is anything else I'm unsure about. I appreciate the reminder.

Thank you Sticky! I do hope my experience will be helpful somehow. You've all been so kind to me.

Yeesh, I'm gonna need bigger pockets ..... Thank you everyone, I really really do appreciate the hand-holding xxx

hileena111

Hi
I'll be there in your pocket

Love
Hileena

Dakky

Wishing you all the best with your appointment toots!

Toots

Thank you Hileena and Dakky, very kind of you both x

Mat48

Hey Toots count me in too please! We are considering moving to Edinburgh from Orkney where we have lived for many years - so I may take a peek at your rheumy and surroundings from your pocket, but will be very careful not to blow your cover or, more importantly your concentration.

I'm sure others have advised already about this but if you have any photos of swollen joints and a very brief summary of the past few months (on one sheet) then this may prove very helpful. And also if you've had steroids - say how well they have worked and same for NSAIDS. I actually sent images of my swollen hand joints to my rheumy by email and he told me they helped him make a diagnosis - although they were equally swollen on the day I saw him. But this was a second appointment because the first one I had my RA still masked by a steroid injection I'd been given 6 weeks earlier. Best of luck! Mat xx

PS we get nothing as comprehensive from our hospital for rheumy apts. I did get a global assessment questionnaire once when I had a telemedicine appointment but mainly we just get a typed letter a week before our appointment and no prior notice about whether or not we have made it to the clinic list or not. We are just asked to bring a pee sample and that's it.

stickywicket

It's getting a bit hectic round here, Toots, so, in case I don't get on again in time, I do hope all goes well.

Toots

Mat48 wrote:

Hey Toots count me in too please! We are considering moving to Edinburgh from Orkney where we have lived for many years - so I may take a peek at your rheumy and surroundings from your pocket, but will be very careful not to blow your cover or, more importantly your concentration.

Thanks Mat, feel free to check out my rheumy ;-) I've had a wee google on him and it looks like he's on Twitter displaying an excellent sense of humour, so I'm hoping that is translated to his patients!

Toots

stickywicket wrote:

It's getting a bit hectic round here, Toots, so, in case I don't get on again in time, I do hope all goes well.

Thank you so much Sticky. Big hugs x

Toots

I really should have done this as soon as I got back while it was fresh in my memory, but for the benefit of newbies, here goes:

FIRST RHEUMATOLOGY CONSULTATION

Appointment scheduled for 9.00am but asked to attend 15 minutes early so that the nurse could do baseline checks.

Baseline checks consisted of:

handing over urine sample (and she gave me another sample vial for next time),
weight measured,
height measured,
blood pressure checked

She also provided me with an appointment card for the consultant to record appointment dates and take with me on my next visit.

Consultant Meeting
Rheumy introduced himself and proceeded to ask:

the questions from the questionnaire I had been sent (see post 1)
history of how it all started and when
list all joints affected (current and previous)
list any/all current medications being taken
had I experienced any hair loss
had I experienced dry eyes and/or mouth
had I experienced any kind of rash
do I have difficulty in doing day to day tasks (if so, what)
who do I share my home with (i.e. who is there to help you)
how far can I walk without pain becoming an issue
how am I sleeping
is my sleep interrupted by pain
have I gained weight recently


Rheumy conducted Physical Examination:

Started with my hands, checked all joints, knuckles and wrists and elbows.
Had me do some kind of chicken dance (haha!) - arms extended above head, behind head, out to side, behind back, and round to front again (presume he was checking range of movement)

Had me move my head - as far left as possible, as far right, then up, chin down on chest, and back to front

At this point he asked me to pop behind the curtain, remove shoes, socks and trousers and lie on the examination bed.

Checked knee joints, ankle joints and toes. This involved squishing and pain but it was what he was looking for ;-)
Checked range of movement my bending knees in turn, and hip movement by pushing each leg in turn out to the side.
Checked range of movement in ankles by pushing foot up towards shin and down into a tippy-toes pose.

He then asked me stand and had me rotate upper body to left and then to right, bend over to touch toes, and straighten back up.

All done. Rheumy advised he would hope to know more after results of blood tests that I would now have done, xray and MRI scan.

Back to nurse:

Blood taken for aforementioned variety of tests
MRI form completed - this questionnaire is to assess whether you have any medical issues with having an MRI (such as pacemaker for example)

Obviously this experience will vary from hospital to hospital, but hopefully it will calm any fears newbies may have about their first Rheumatology visit.

Toots

I thought I'd try to make the above post non-specific to my particular ailments to try to give a good idea of what newbs might expect from their first Rheumy appointment. I do hope it helps.


Well that was indeed a busy morning. Unexpected trip to the GP after Rheumy appointment, you know it's going to be an interesting day when you leave the hospital with more ailments than you went in with!!

From a personal perspective, I was a bit disappointed that the Rheumy wasn't more fun ;-) The nurses were fantastic though and I can't say I disliked Mr Rheumy, he was just all no-nonsense which is fair enough, especially when you're the first appointment of what may a long day! Nurse checking my blood pressure pre-appointment got a nasty shock and asked if I had problems with my bp or if I had 'white-coat syndrome'. Nope, nope and nope. She promised to check my bp again after my rheumy consult and when she did, aaarghh still way high! Had GP appointment this afternoon and she said it was on the high side but lower than it had been at the hospital, so she's not overly concerned. I've to go back in a couple of weeks for a retest.

Rheumy informed me that it would appear to be an inflammatory arthritis of some sort, given my detailed complaints, but he couldn't feel much inflammation in my joints, more so ligaments and tendons. He explained that this type of thing can be tricky (something I'd learned from here!). Blood results will help I'd imagine and from what he said it seems he'll be quite thorough and check for a lot of different markers etc.

He did say I was hypermobile, which didn't come as much of a surprise.

I got my feet xrayed there and then and am to wait for an MRI appointment. In the meantime he wants me OFF the Sulf, says if it was going to help me it would have done so by now and he'd like to take the opportunity to get me back to 'clean' for my MRI which will likely be January at some point.

Remains to be seen if coming off the Sulf will cause my other joints to protest, but I can understand where he's coming from.

Thanks so much to you all for being in my pocket! I hope the early start and bumpy ride was bearable! xxxxxxx

Mat48

Well that all looks to be pretty efficient to me Toots. My BP is usually too high but for some reason, as with many health related issues, they only ever check it if I remind them to which isn't often. A hospital doc explained a few months ago that if it even comes down to within normal range once then they know its not hypertension disease.

The lack of humour was same with mine the first time. After that he became more kind but a little too jolly sometimes - so I forget the seriousness of the implications for me?! :roll:

I too have a lot of my sing in tendons and have gathered from others that this could indicate one of the Spondyloarthritis conditions rather than RA. They are certainly being thorough for you. The only time my feet have been x-rayed was a few weeks ago. Hands twice x rayed at my request. Never had ultrasound or MRI done yet. So your new rheumy sounds very thorough at least and that's a very good sign.

Did he give you any kind of time frame? My GP put my on sulpha while I waited but I has a severe reaction to it so ended up in steroids - which masked things for my first rheumy apt! Sorry to waffle but I'm waiting for GP to phone me as I'm wiped out again and want to stop antihistamine but one of hives has become infected! Hey ho. X

Boomer13

Well Toots, it's good he was no nonsense. That bodes well for him being thorough, in my limited experience. My first rheum visit was like an interrogation and non-stop for forty minutes :madnoel: I wasn't sure I like him after that but 4 or 5 visits on, I like him more and more. We don't want your doc missing anything with you ((())).

Please post your experience coming off sulf. I'll be interesting to hear if you notice a difference. It's a shame you had to put up with all the side-effects just to come off it again. Oh well, welcome to the world of doctors not agreeing with each other

I'm a bit jealous that you're having an MRI. Never had one of those myself.
Feet up today? I hope so, (((())))
xxAnna :areindeer:

Toots

Thanks Mat! No time frame given, the nurse said basically 'wait to hear'. It was until I got home I remembered seeing something where I could have had the choice to have all letters etc to gp copied in to me, but nothing was mentioned and it may not work that way here anyway. I don't know, but it's something I must make a note of. I'm not sure whether he'll wait for the MRI info first anyway. I was told the MRI should be January, but of course that could be wrong, or it could be that it'll be 31st, so could be well in to February. Why is it you always think to ask these questions when it's too late haha??!

Re the high blood pressure reading - the last time I had my blood pressure checked was just before I had gall bladder surgery almost 2 years ago and it was absolutely fine then, despite the fact it was my first ever surgery. Of course we're a couple of years down the road and I appear to be falling apart at the seams haha! My mother, her brother and my brother all have hypertension, so it wouldn't surprise me as such. However, I'm hoping that perhaps its a combination of stress, medication, lack of exercise and recent weight gain that have caused it. I eat pretty well, but I do have rather a penchant for coffee and, of course, am still smoking (I'm down to 10 a day though, working on it). Maybe going to have to seriously consider foregoing my caffeine, that will be a shock to my system for sure! :xmas_cry:

Toots

Boomer13 wrote:

Feet up today? I hope so, (((())))
xxAnna :areindeer:

Thank you for the hugs Anna, they brightened my day
Yup, feet most definitely up now for the remainder of the day. I feel knackered and a bit sorer than I was, but I guess all the poking and prodding won't have helped.

I'm happy that the rheumy seems to be doing a thorough job, I can't remember his exact words, but when I pointed out my RF came back negative, he was quick so suggest that this was just one marker and that the others would be checked too. Nothing to do but wait ... if I'm honest, my anxiety right now is over finding that the Sulfa was doing something so the possiblity I'm going to flare badly, and of course the whole bp thing. I'll let you know what happens with the Sufla. That all said, my OH will be home this time next week and we haven't been together since March (!) so I've got plenty to look forward to. Not to mention the exercise I haven't been getting :xmas_cheesygrin:

Hugs honey, how are you feeling today? Hope you're still taking it relatively easy xxx

Boomer13

Thank you for asking Toots. I will rest after today.... :santa: Santa is limping today.

That's a very long time for OH to be away. This must be very difficult?

Extra ((())) coming your way!

stickywicket

Toots, once again you have, thoughtfully, taken the time to give a very comprehensive account of your appointment which I'm sure others will find helpful. It seems to have been a very good one. We all appreciate a bit of banter but I think I'd rather have an efficient dour man than a less efficient joker.

As for the BP - I once had an unusually high one. It was at a pre-med so they insisted on 3 'normal' ones at my GP's surgery. My surgery said 'But yours is always OK'. They did them and it was. I still don't understand the other one.

However, there is a known connection between smoking and RA. The NRAS considers every rheumatology department should reinforce the message that smoking is bad for it and says 'A number of studies have suggested that if people continue to smoke after developing RA, they are more likely to develop more severe joint disease, and RA disease outside joints such as rheumatoid nodules, and inflammation in blood vessels known as vasculitis.'