First visit to rheumatologist

sugarbuttie
sugarbuttie Member Posts: 225
edited 1. Jul 2010, 13:34 in Living with Arthritis archive
Hi there

I have just joined the Forum today - what a wonderful place this is! I was hoping for some advice, if you can help.

I have been suffering from joint pain in my hands, wrists, feet, ankle & knees for for a few months now. Had blood tests at GP (negative) & xrays on hands (nothing). Painkillers & anti-inflammatories are not helping (cocodamol 30/500 & narproxen). I am so stiff & sore - really struggling to grip & keep dropping things. I have been trying to keep everything together for the sake of my husband & two young children but today I just caved in. Had to take the day off sick as I can stand no more.

I have my first rheumy appointment on Thursday & am wondering what to expect? I have been waiting for this appointment for such a long time. Do you think they will be able to give me a diagnosis there & then based on my symptoms & difficulties? (even though bloods negative etc) Or will they want to run more tests? I am desperate to know what is wrong so I can start the right treatment. I am so worried about taking time off work.

I think I might be expecting a bit much from my first appoinment.....can you offer any advice on how long it might take for a diagnosis?

Thank you in advance.

Comments

  • pennycrayon
    pennycrayon Member Posts: 69
    edited 30. Nov -1, 00:00
    Hi there. Welcome to the forum :)

    Im sorry to hear you have been having a hard time of it. At least you have your appointment on Thursday so hopefully a diagnosis will be forthcoming.

    Everyones first appointment is different, just make sure you know exactly what you want to ask before you go-you will be less likely to forget anything that way. I found it helped to take someone with me (in my case it was my darling mum) and she asked questions that had not even occured to me. Plus it was good moral support for what can be daunting especially if you have been suffering for a while now. And dont worry if your appointment lasts a while. Dont feel like you cant stay as long as you need to. Make sure you get all the answers you need and want.

    At my first appointment they went over my history and did a full joint check (mobility, stiffness and inflamation) and discussed treatment. They also did x rays on the day and took more bloods. I was diagnosed with RA during that appointment (apparently it was very obvious) and they sorted out my medication straight away. This may differ from other peoples first appointments (as I said before) so dont take this as the norm.

    I don't know if I have actually been any help and I hope you get a diagnosis on Thursday when you go.

    Let us know how you go on
    xx
  • sugarbuttie
    sugarbuttie Member Posts: 225
    edited 30. Nov -1, 00:00
    Thank you Lynn for your speedy response. I go on holiday on 19 July & am hoping to have a diagnosis by then so I will not spend my precious time away worrying & getting even more worked up than I already am. Do you think I will be any further forward by 19 July with my first appt being 1 July (even if they have to run more tests)? I just feel noone understands & that I cannot ask for help/support without a diagnosis. I'm having a bad day......sorry! :cry:
  • speedalong
    speedalong Member Posts: 3,272
    edited 29. Jun 2010, 17:49
    Hi SB,
    I have OA so is see an ortho rather than a rheumy, but just wanted to welcome you to the forum. Others who see rheumys will add their tuppence worth alongside the fab reply from Collywobble & Pennycrayon.

    Let us know how you get on.

    Make sure you jot down any questions you have for the rheumy - it useful to have prompts at the appointment.

    Speedy
  • sugarbuttie
    sugarbuttie Member Posts: 225
    edited 30. Nov -1, 00:00
    thank you Penny you have helped a lot. It is reasurring to know that I may get a diagnosis on Thurs & not have to spend more weeks/months not knowing & struggling. I am sure people think I am making it up!!

    Can anyone advise how long my appt is likely to last? Shall I expect to be at the hospital half a day perhaps? :?:
  • pennycrayon
    pennycrayon Member Posts: 69
    edited 30. Nov -1, 00:00
    I was there for about three hours what with going for x rays and blood tests and seeing the consultant. But i came out feeling happy so would have been happy spending the whole day there to come out with the result that i did.

    I think it will just depend on the doc you get and any tests they do on the day.

    xx
  • sugarbuttie
    sugarbuttie Member Posts: 225
    edited 30. Nov -1, 00:00
    thank you everyone - you are very kind

    Penny - if they take blood tests at my appt, will I get the results the same day or will I have to go back another time?
  • sugarbuttie
    sugarbuttie Member Posts: 225
    edited 30. Nov -1, 00:00
    Thanks Lynn - I feel a lot more reassured.

    I currently have cocodamol 30/500 which don't really do much - can you suggest a better pain killer so that I can ask my GP before I go away if needs be?
  • pennycrayon
    pennycrayon Member Posts: 69
    edited 30. Nov -1, 00:00
    The blood test results were sent to me after the appointment. They gave me a little purple booklet that all my blood test results get recorded in so they can identify any trends and keep an eye on things. I think it is probably unlikely you will get the blood results the same day. But that does not definitely mean you will not get a diagnosis. Like the others have said-it depends on the doc and what he/she does on the day.

    xx
  • dreamdaisy
    dreamdaisy Member Posts: 31,520
    edited 30. Nov -1, 00:00
    Oh sugarbuttie, welcome to the wonderful world of pain and confusion in which we live, I'm sorry you are here. I hate to sound too negative but please do not get your hopes up too high. Diagnosis is sometimes anything but straightforward and it can take time. Make a note of all your major symptoms, what hurts and when, tiredness levels, pain relief etc so that the rheumatologist has as full a picture of you as possible. Take somebody with you too - moral support is essential for these visits and they often pick up on things that you might miss. I wish youwell and please let us know how you get on. Dreamdaisy
  • sugarbuttie
    sugarbuttie Member Posts: 225
    edited 30. Nov -1, 00:00
    Hi there

    Just thought I'd let you know how I got on at my first appt today. I went alone but armed with a page full of notes. The process was pretty much how you described....urine tests, blood tests, xrays.

    Based on my symptoms, the consultant said I had inflammatory arthritis, possibly RA. He could not be definite as I had negative blood results when last done at GP in April. I am, therefore, not 'textbook'.

    He was going to give me a steroid injection there & then but a risk of potential infection showed up in my urine twice. I now have to wait until next week. If there is no urine infection, I can have an injection next week. If there is infection, I will need to get antibiotics first to clear it up before I can have an injection.

    I am going to be seen again in 2 months once all my new blood tests etc come back. He will then decide on the next course of treatment & gave me two leaflets - one about methotrxate & one about sulfasalazine.

    So....what do you think? Do you think my first appt went ok based on your past experiences? I was disappointed not to be able to get an injection there & then but that's life. Does inflammatory arthritis tend to get used as a diagnosis when nothing shows up in the blood?

    Thanks for all you advice. I went well equipped & better prepared. Thank you xx
  • tkachev
    tkachev Member Posts: 8,332
    edited 30. Nov -1, 00:00
    As Lynn said better safe than sorry. Hopefully you will be ready to have your injection just before you go away on your holiday. I know my steroid injection helped immediately and reduced my pain levels(mine was in the knees in those days).

    You will get lots of advice and support on here so keep tuning in.

    Elizabeth
  • sugarbuttie
    sugarbuttie Member Posts: 225
    edited 30. Nov -1, 00:00
    yes - it is hopeful that I will get an injection before my hols so that is good news. Have you ever had one & how long did it take to work?
  • tillytop
    tillytop Member Posts: 3,460
    edited 30. Nov -1, 00:00
    Hi Sugarbuttie - and welcome to the forum.

    So sorry you are struggling so much but glad you have at least now been seen by the specialist so can start to move forward from here. I can see from your posts how desperate you are to have definite answers to your many questions and I know how hard it is, specially at the beginning to come to terms with the fact that definite answers are often not possible with arthrtis because the course of the disease and the effect of the various drugs varies so much from person to person.

    On a positive note, in terms of the steroid injection, my experience has been that they can work really quickly - I felt like a spring lamb when I had my first one - so hopefully this will be the case for you too and you will be much more sprightly come your holiday!

    In terms of pain relief, it might also be worth asking your GP if you can try a different anti-anflammatory, along with your co-codamol. There are lots of different ones and some people do better with one sort than another.

    Really good lulck with it all - and please do keep posting. We'll do all we can to support you.

    Love Tilly x
  • sugarbuttie
    sugarbuttie Member Posts: 225
    edited 30. Nov -1, 00:00
    Thanks for all your replies - you are all very kind & this forum is excellent for little worry-worts like me who have a million questions. I'm sure you'll be sick of me in time!

    Seriously though, I do not know anyone personally with RA etc. It appears to be a very hidden & little understood disease. Very sad.

    Thank you all xx
  • dreamdaisy
    dreamdaisy Member Posts: 31,520
    edited 30. Nov -1, 00:00
    You are not a worry-wort. When it's all new it is not exciting, like new things should be, it is confusing and worrying. Diagnosis is sometimes less than straightforward, and sometimes it seems as if there is much mucking about for no real gain. I've replied about the steroid jab on your other thread. I wish you well. DD
  • woodbon
    woodbon Member Posts: 4,969
    edited 30. Nov -1, 00:00
    Hi Welcome to the forum. I have OA and they think seronegative rA and scolliosis, which is a bend in the spine. For me, its been ages of tests, scans and x-rays, before they could make a diagnosis. Thats because the Rheumatoid Factor, which is usually in the blood of RA paitents, is missing from mine. :? None of the tests was that painful or awful, which is a good thing! :wink:

    I'm only saying this to warn you that sometimes it does take a while for the docs to come up with an answer! I hope yours is straighforward and you quickly get an answer, as waiting is a pain :lol: .
    Love Sue
  • caprica
    caprica Member Posts: 195
    edited 30. Nov -1, 00:00
    Hey there, welcome to the forum :)
    I have sero negative inflammatory arthritis too.. boy it's a tongue twister!

    I'm glad you're seeing a rheumy now, although I'm a bit surprised they're not seeing you again for 2 months. I started seeing mine in february and I've had about a million appointments, I think the longest between them's been 6 weeks.

    I hope you get on your meds soon, and you're probably really scared just now as I was about 8 months ago when it all started. But this forum is amazing and everyone here will help you through tough times.

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