just back from first rheumy appointment

caprica
caprica Member Posts: 195
edited 19. Feb 2010, 13:04 in Living with Arthritis archive
Well.. I'm not sure what to think.
He asked me lots of questions and examined my joints and made me do funny poses, a bit like yoga.
Then he took about 8 vials of blood and xrays of my hands and feet.

He said it seems I have some sort of inflammatory polyarthritis. My GPs tests were all negative but he's gonna run them again and also do the ..CCP or something...the newer antibody one that shows up early arthritis. Also if my xrays show erosions he'll start me on mtx, if not, he'll start me on sulpha. Going back in 6 weeks to get results and start meds.

Again though I don't feel like I have any answers. He can't tell me what it is, or if it's severe, or anything. He told me I have read too much information and I'm convinced that I'll have a bad outcome, he said sometimes ignorance is bliss. :(

But then, I said to him.. well what is a 'good outcome' with arthritis?? I dont reckon I'll be skipping about at age 50, even with a really 'good' outcome. He said out of his patients, 50% go about almost as normal, a further 20% have some degree of difficulties and then another 30% are the tough cases.

But I don't know what that means. What is 'normal' anyway. I'll never be like my friends anymore. I think he was just trying to put a positive spin on it. Blah.

I'm getting drunk tonight. I hate my body, can I buy a new one somewhere?

Comments

  • livinglegend
    livinglegend Member Posts: 1,425
    edited 30. Nov -1, 00:00
    Until he can check your xrays properly and see the results of your blood tests he can't really say how bad it is. Anything else is just a guess, not what you want.

    When he said that 50% go about almost as normal, he means that except for a slight difficulty in carrying out some tasks, no-one would notice they had arthritis. 20% you would probably notice something was wrong with them, with difficulties doing tasks or walking. The other 30% are the tough cases. They are really ill and disabled. They need care on a regular basis just to do everyday things. They have difficulty walking and need sticks, crutches or a wheelchair to get around and are in constant pain.

    What is 'normal' anyway. I'll never be like my friends anymore. That is the hard bit for anyone who has arthritis, you will never be the same. I would suggest that you need to talk to someone about how best to come to terms with your situation. Call the free helpline on 0808 800 4050 which is at the top of the page, they are there to help and sometimes just talking to someone who really understands can make things more clearer than they are now.

    Sorry, but if you want a new body there is a long, long queue with everyone else in front. When you and I finally reach the counter they will put up the shutters, as they will have run out of all the good spares. Typical!

    Joseph 8)
    Josephm0310.gif
  • dorcas
    dorcas Member Posts: 3,516
    edited 30. Nov -1, 00:00
    Hi Caprica!

    On balance it seems you had quite a thorough exam and consultation, and six weeks isn't too long to wait for a follow up!
    hope it all becomes clearer for you then. x

    I know it isn't easy to consider what life may be like with arther...but you'll be in good company with folks in the forum! and you never know....perhaps you'll be in the magic 50%!!!!

    meantime enjoy your glass of wine and try not to worry too much.

    Hey...and if they're giving out new bodies I'll be jumping the queue!...it's every 'man' for himself!
    Irisx
  • salamander
    salamander Member Posts: 1,906
    edited 30. Nov -1, 00:00
    hi Caprica
    It is frustrating when you are first 'diagnosed'. I had to wait quite a long while before they really knew what to call what I've got. It seems to me also that a lot of the treatment is individual so they can't really say what will work for you. Also, there is a lot they can do with anti tnf's and stuff like that if you don't respond well to other drugs. I've got a friend who is on methotrexate and she is doing really well, no pain, no problems. You won't know how you are going to be until it happens but it is a hard time when you first find out you've got your illness. You consultant seems to be doing all the right stuff from my limited experience. I found this forum really useful but wish I'd found it earlier!
  • dolittle
    dolittle Member Posts: 240
    edited 30. Nov -1, 00:00
    Hi Caprica,
    Agree with when the others have told you. Hang in there, as they say. In terms of arthur and everything that goes with it, 6 weeks isn't long. There will be test results to be collected, meetings of various clinicians discussing your case and what is the way forward.

    I found one of the most difficult things was getting my head round the fact that I had this damned 'dis-ease', as I try to look upon it - instead of a disease. I saw somewhere that someone said they were 'grieving for who they used to be'. You will probably go through this as well, but you'll come out the other side and cope with it.

    A very good friend was, as I thought, very cruel when she said to me...'YOU have got to forget about the things you used to do and find and concentrate on the things you CAN do.' It was probably one of the best things she could have said - hard and slow to put into practice, but at least I've stopped beating myself up. I can now laugh at the way I hobble about and have learned to persuade all sorts of people to do all sorts for me when I have to trundle round the supermarket in my wheelchair. I think I talked to more people now than when I was a well-groomed, stilletto tottering 'floosy' (as my mum used to call me). We've had some great laughs with perfect strangers

    Takes a bit of getting used to - just takes time.
    Best wishes
    Dolittle
  • scattered
    scattered Member Posts: 326
    edited 30. Nov -1, 00:00
    That sounds like a positive appointment. You got a diagnosis, no definitive but still a diagnosis, and information about potential treatment plans.

    With all the drugs available now it is very rare for someone to become completely disabled by an inflammatory arthritis. The majority of people don't show visible symptoms, so take heart from the percentages he gave you.

    It will take time to get used to your diagnosis and you won't feel 'normal'. Allow yourself time to grieve for the person you could have been if you didn't have this disease but don't let the disease take over your life.
  • Starburst
    Starburst Member Posts: 2,546
    edited 30. Nov -1, 00:00
    Hello Caprica,

    ((Gentle hugs))

    I know it's very difficult when you first get your diagnosis, especially when it's vague. However, in a lot of cases, the diagnosis doesn't become clear for a while. It is frustrating but please try to be patient. I do understand how hard it is, I was frantic after my non-specific diagnosis but as the weeks have gone by, it's got easier to accept. Ignorance may be bliss but being well educated on your condition is important too in order to help you make informed decisions.

    I hope you didn't get too drunk last night and don't have a headache this morning. Please don't be too hard on yourself. It's normal to have all these difficult feelings but it will be ok. The treatments today are better than ever and continue to improve.

    Take care.
    love Sophie x
  • valval
    valval Member Posts: 14,911
    edited 30. Nov -1, 00:00
    hi i know you feel he did not give you the answers you wanted but he could not till he has the answers he did a good job of checking you out and even did xrays i have not had any of them since getting my meds sorted nearly back to normal have to plan ahead but do not mind that can do most of what i could before even thinking of decorating when weather better could not even clean the place before working 4 hours aday ment sleeping before i went and sitting with feet up when i got back so things will be so much better just hang in there they need to know what they treating it worth the wait
    val
  • frogmorton
    frogmorton Member Posts: 29,336
    edited 30. Nov -1, 00:00
    Hi Caprica

    Well the ball is now rolling.

    It sounds as though he did everything you would have expected - what he doesn't realise is how scary this all is for you and any of us at the beginning.

    You are in the system now (when do you go back?) and will soon be getting treatment which is preventative so that is good.

    In the meantime we will be here to support you while you get your head round it all.

    I for one hope you have agood outcome :)

    Love

    Toni xx((()))
  • caprica
    caprica Member Posts: 195
    edited 30. Nov -1, 00:00
    thanks

    I am finding it all very hard. I just spent 5 minutes kicking and punching a toilet cubicle at work. Then I cried for 10 minutes. I think I'm going batty.

    toni, I've got an appointment in 6 weeks but the radiologist lady saw how distressed I was and said that the results of my xrays should be with my GP in a week so I can go see him and see if I have erosions.

    maybe i'll punch more things and help the erosions along. *rolls eyes*
  • frogmorton
    frogmorton Member Posts: 29,336
    edited 30. Nov -1, 00:00
    Caprica

    Puching and crying are all part of getting your head round it all - don't feel bad for feeling like that. You know I think will all have done this.

    I hope then that you can get your results a little sooner.

    Please take care and keep posting - we will keep you sane

    Love

    Toni xx
  • clairy
    clairy Member Posts: 29
    edited 30. Nov -1, 00:00
    Hi,

    I'm glad you finally got some answers. I know it's really frustrating when they don't know exactly what it is, but only the test will give you the answers. Did you meet any of the Rheumy nurses? They can be really good and giving you information about what's going on and will have access to you test results too, and they can be a bit more sensitive to your situation that the doctor are.

    Hang on in there

    xxx
  • caprica
    caprica Member Posts: 195
    edited 30. Nov -1, 00:00
    Clairy, nope didn't meet the nurses. Do you normally see the nurses after the doctor?