Last minute panic/ nerves

rachelj

I am off to see the Rheumatologist for the first time tomorrow for RA. I am not really sure what to expect I have a long list of questions and thats about it. I asked the consultants secretary (are you still allowed to call them that??) how long my apointment might be and she said "oh love you might be here all day, make sure you wear clothes that are easy for you to do and undo, wear a vest if you aren't comfortable in your underwear".

So I am guessing I might be sent off for an xray, maybe a blood test, but can't think what else they want to do to me :? Also not sure if I should skip my meds in the morning so he can see me in my "natural" state, although I am still going to have to soak my hands in warm water otherwise I will never get the front door open hahahaha

What were other peoples experiences like?

Rach

dreamdaisy

It was so long ago I can't remember. I was told that arthritis wasn't causing my problems, so needless to say I don't have much to do with that rheumatology consultant now.

The comfortable clothing advice is good, and yes, I do skip the pain med so that they can see the difference. They may well want Xrays and bloods: you have your list of questions, try to write as much of their answers down as you can and don't be afraid to ask them to repeat things or slow down: you have waited a while for this, you need to get the info. Take some water with you, and pain meds for after. Ummmmmm, can't think of anything more practical - we need dorcas, she's good at that stuff! Let us know how you get on. DD

lindalegs

Hi Rach,

Yup, bloods and x-rays. Expect them to take a urine sample too. They'll probably want to know your medical history as well as having a good look at your joints.

I would take my meds if I were you they'll know how bad you've been anyway because otherwise you wouldn't have been referred. I usually write down anything I need to know too as my brain can empty as I sit down in front of them.

Let us know how you go on.

Luv Legs

marion1952

Hi Rach

You will probably lie on a couch and the Rheumy will look at, and press, all your joints and will ask which ones hurt - eg they will look at your hands, wrists, elbows, knees, feet, toes.. they will ask you to raise your arms (if you can) and will feel your shoulders and get you to turn your head.

Hope it goes OK.. let us know how you get on.

Marion

agslegs

Hi Rach

I went to my appointment expecting to be out in 20 mins and ended up spending 3 hours in hospital. My appt was more or less on time but I was then sent for blood tests and then x rays and then had to have a chat with the nurse so there was a lot of hanging around involved.

My consultant was very matter of fact about my diagnosis which was a shame because the RA diagnosis came as a real shock to me and he assumed I knew I had it already :roll: . On that basis I was glad I had my mum with me for some moral support.

Might be worth writing down any questions you might have before hand since you might forget what you want to ask during the consultation.

They will probably give you a load of leaflets to take away with you. My doctor offered me a place on a new trial when I went for my initial consultation. This is not the norm but it did mean I had an awful lot to take in on my first visit since I had to decide which course of treatment I wanted to take.

Good luck tomorrow

Ags x

rachelj

CHeers all,

my questions are written down, I have a notepad to take notes, and my mums medical reports which detail a lot of her side of the families medical issues, and my Gran has given me a full run down of the other side. Never looks good when you add the two together!

I better go and scrub my feet, they have been so swollen of late I have been living in my crocs or bare foot and I seem to have developed lovely cracked heels.

I am expecting the xrays only because thanks to bureaucracy the xrays my GP had done which he based his diagnosis on can't be released to a consultant in the hospital I am seeing. Got to love the PCA.

Well I am having my last glass of wine before condemnation, and will let you know how I get on.

Rach

dreamdaisy

Soak the tired tooties in a big bowl of hot water with lots of olive or baby oil. Swig one glass whilst doing so. After 10 minutes or so, pat dry, and moisturise well. Have another glass whilst waiting for stuff to sink in. Then tidy up and swan off to bed. Sleep well. Please let us know how you get on. DD

ironic

Good luck for tomorrow Rach, Glad you have someone with you as you will have a lot to take in.
They will more than likely want to get the results from the x-rays and bloods before they decide what to do next.
It all takes time so be prepared to pace yourself a little longer.

Best wishes, and have a good rest tonight.

Lv, Ix

dorcas

Hi Rach.

As other have already said... the rheummy will take a full medical history; carry out an examination of each and every joint; blood tests and xrays.... so you are likely to be there for some time so take a book!.

good luck Rach

Iris x

cthornley

Good luck Rach

It seems so long ago but I remember that at mine they also take took my height and weight so they could monitor it over time.
A lot of the time seems to be taken up by waiting around (well it is at my local hospital), so take some company or a paper .....after 12 yrs I know exactly how many ceiling tiles there are in the freeman Rhemy corridor and every square inch of the teddy pictures
:roll:
Chrissie

dreamdaisy

They never change the pictures, do they? Why? Ours are as dull as ditchwater.

Thank you dorcas, you know so much! DD (PS. My birthday is the day after yours - I date from 59)

woodbon

Hi, As I am on quite a few meds I took the list that the Chemists computer prints out, it has EVERYTHING on it!!!! :oops: I had to take of my clothes so that the doc could see my spine and joints when I was standing as well as lieing on the couch witht he usual bending and prodding. I hate that as I get muddled with my left and right and always make a twit of myself! :oops: (Nearly failed my driving test because of that and have endless rows with hubby when navogating)! DD's advice is very good. I like it a lot and will practice it on my next hospital appointment.

The very best of good luck and try not to worry. The secretary sounds nice.
Lots of love, Sue

rachelj

It would be nice to see the secretary to put a face to the name after the number of calls I have had over these xrays, that and me asking "got any cancellations"

I have 3 A4 pages of questions, current medication, description of symptoms over past few months, list of general daily activities i can/can't do, family medical history, pictures etc. Book is at the ready, bottle of water, change for the car park and hot water bottle in case its cold out and I want to warm my hands when I get there. Poor consultant isn't going to know what's hit him, little does he know I have had the army of Arthr on my side :-).

Lets see if I make it back here or on to another dept, maybe the mental ward as if its not RA then I think its in my head!

Rach

dorcas

Best of luck for today Rach

you're definitely well prepared !
(love your comment about having the arther army behind you...great )

Iris x

dreamdaisy

Morning Rachel - it will all be fine. I hope your feet feel pleasant. We are with you in spirit. DD

speedalong

Hope your appointment goes well Rachael, you sound very well prepared.

Good for you.

Speedy

rachelj

Well I was well prepared, shame the hospital weren't. The Rheumatologist didn't have my last lot of blood results and the GP's leter just said "elevated levels indicated RA". WHy they couldn;t phone the surgery and get the receptionist to read them out I don't know.

Went through a list of all my aches, when they had occured, frequency and severity. What medication I was on, was it working, any issues etc. So he poked at a few joints, mainly my hands and wrists. Said he doesn't think its Rheumatoid or anything at all, its to do with my typing, probably just RSI. So I said how does RSI explain the pains in my feet, ankles, shins, legs in general waking me up at night, the fact that 2 weeks off work hasn't made a blind bit of difference, morning stiffness and fatigue his response "Well that's more difficult to explain". Argh!!! Sits and reads his notes again and says, well maybe its just very early on.

So I was dispatched for a full blood test, this time including Thyroid, and liver tests, and booked in for a bone scan. I won't hear anything for at least 6 weeks. My right hand is agony from having been pulled about, and has a lovely bruise on the back from where they took the blood.

I get home to find a letter, only posted yesterday, asking for an early morning urine sample, never occurred to be that I was missing some correspondence when the nurse asked "have you been asked to bring a urine sample" I responded "no". So guess I better phone up and sort that out, how did they think a letter posted yesterday would stand a chance of getting to me before my appointment? I booked everything online, so wasn't expecting to get a letter.

Hacked off doesn't quite cover it, on the plus side there was a power cut so the carpark was free

Rheumatoid free Rachel :?

dreamdaisy

Right, we have learned some useful lessons learned about your hospital. Don't do any more on-line (it is a black hole for communication), do bloods in good time before an appointment (I'm not saying that you didn't this time but it is worth remembering) and they are not that good at listening to you or responding to your concerns. From all your symptoms I would say (putting on my white coat as I type) that they point to an arthritic condition of some sort - not all have names. More research and tests are needed to get as full a picture as possible: I wasn't diagnosed for nine years, I remember the frustration of it all very well indeed. You are on the right track but these things do not happen overnight.

Free car parking means you probably have enough dosh to get a treat: wine or choccy or both. That is what Dr DD recommends for now. You will feel sore for a while after all the prodding and poking, so take some pain meds and rest as much as you can. I am so sorry it wasn't that good. Thinking of you. DD

dorcas

Oh Rachel ... what a disappointment :roll:

Try not to get despondent... as DD wisely said it can take quite some time before getting a diagnosis so you may be in for the long haul.

Stick with it and don't be put off by this particular consultation....Do you have another appointment for 6wks time?
perhaps when the results are back from all the tests you've had they will show a clearer picture of which of the arther's it is that's causing your pain.

(((hugs)))

Iris x
ps.... if you have your bloods done a fortnight or so before the next rheummy appointment you can then ask your surgery to print the results off to take with you... :idea:

rachelj

My blood test results which were missing were done 10 weeks ago and went back to the GP, it was those which resulted in the referral in the first place, where they have gone I have no idea as he had my blood test results that i had done 12/13 weeks ago, unfortunately they weren't the detailed ones, just showed my red and white balance was wrong and an insignificant elevation in RF.

I only knew I had to arrange the xrays to be transfered myself because the radiographer at the hospital where they were done told me if that I got refered on to a consultant I shoudl tell them my xrays were held at such and such hospital. Next time I will do the same for my bloods too, and at least this time they were done at the hospital rather than at the GPs surgery.

Work are already on my case, "have you got a written diagnosis now", "have you been signed off sick", "how much time will you need off for this bone scan".

Now I just need to get my head straight and prepare for another 6 weeks of waiting. I know I shouldn't complain when there are people like DD who waited years for diagnosis, I just wish the doctors would be a bit less optimistic when they give you these deadlines/ treatment timelines.

Time to crack open a bottle of something me thinks to ease the pain, codeine of course :-)

Rach

dreamdaisy

Grrrrrrrrrrrr! Even more frustrating for you then. You did your best, they couldn't be bothered. Right, crack open the codeine, and a nice little pink fizzy number to wash them down - Vimto! DD

rachelj

Oh for some fizzy vimto, I am on the flat stuff at the moment. My stomach doesn't seem to like Ibuprofen and carbonated drinks.

Isn't it always the little things that get you the most about this horrid Arthur!

Rach

marion1952

HI Rachel

What a shambles - after all the work you had done to get prepared!

Your GP seems better than the consultant... is it worth you seeing your GP in about a week and getting him to phone the Rheumy/hospital for all your results?? ... and perhaps to speed up the appoinment (another 6 weeks is a long time)...

You've been suffering for quite a few months now, and if it is RA you should be put on a DMARD (ie Disease Modifying Drug) as soon as possible .. that's what the research shows - ' the earlier the treatment, the better the prognosis'..

So sorry that youve had such a disappointing day ...

Marion x

carola

Hi RAch

Good luck with your appointment.

My 1st one I was there for about 3 hours. First the Rheumy Nurse took my blood pressure, weight and height and I gave a urine sample. Then I saw the Rheumy and joints and mobility were examined and rashes etc. I told them what symptoms and when they get bad and when they are a bit better. I too had lots of questions written down and pushed for answers.
Then they took my blood for various tests and x-rays - some to ensure my chest was ok as putting me on meds and others to see my joints.

Let us know how you get on.
Carol

dreamdaisy

You having a bad day marilyn? She did! DD

pixie01

Hi Rach, sorry you had a disapointing appt ( probably an understatement ) But I just wanted to say, like DD, it took about 6 years for me to be told I had IA. I didn't get diagnosed till last aug after having a MRI with contrast on my hands. Good luck, hopefully your bone scan will shed more light
Hugs Jo x