Hi all

Joanna
Joanna Member Posts: 8
edited 5. Sep 2017, 10:40 in Say Hello Archive
Hello fellow creakers and crackers. I was diagnosed at 29 I am now 51 yet still no closer to knowing what type of arthritis I have. For many years I was told I had aggressive juvenile arthritis until a rather snotty Doctor declared quite recently I was too old when I first had symptoms to have AJA. So, here we are.

I've had a pretty tough couple of years or so, but (think) I can start to see a light at the end of the tunnel.

Joanna

Comments

  • moderator
    moderator Moderator Posts: 4,080
    edited 30. Nov -1, 00:00
    Hi Joanna

    Welcome to the arthritis care forum, a good place for getting and giving advice, support and laughter. I do hope you get a referral to a good rheumatologist soon and have some blood tests to at least narrow down the choices of arthritis.

    Let us know a little more about yourself, how you are affected by arthritis and how we can be of help.

    Best wishes
    Yvonne x
  • Joanna
    Joanna Member Posts: 8
    edited 30. Nov -1, 00:00
    moderator wrote:
    Hi Joanna

    Welcome to the arthritis care forum, a good place for getting and giving advice, support and laughter. I do hope you get a referral to a good rheumatologist soon and have some blood tests to at least narrow down the choices of arthritis.

    Let us know a little more about yourself, how you are affected by arthritis and how we can be of help.

    Best wishes
    Yvonne x

    Hello Yvonne and thank you.

    I have arthritis in all my joints and in my spine. My late husband used to say the arthritis in my jaw saved our marriage as I had days when I couldn't talk lol.

    I've had all kinds of blood tests from many different rheumatologists and they all said AJA until this recent Doctor. The reason being, it came on very fast and affected all joints to the point I was bed bound. Over the years with physio and trial and error medication I am now rarely bed bound but always in loads of pain.

    I've just been through the PIP ordeal where I was awarded nothing after being on high rate C&M DLA. Luckily at tribunal I won and now have enhanced C&M.

    Joanna
  • stickywicket
    stickywicket Member Posts: 26,241
    edited 30. Nov -1, 00:00
    Hi Joanna and welcome from me too. I'm sorry things have been so rough for you.

    I don't think a precise diagnosis matters too much as the meds are all the same. I was diagnosed with Stills Disease way back in 1961 but was told that that was because I had all the signs of RA but was under 16 yrs of age. I think nowadays they'd call it JIA but I just say RA as people understand that. I think if your notes say one thing most docs will just pick up on that and look no further.
    What meds are you on? I take a combination of methotrexate and hydroxychloroquine.
    "The deeper sorrow carves into your being the more joy you can contain." Kahlil Gibran
  • Joanna
    Joanna Member Posts: 8
    edited 30. Nov -1, 00:00
    Hi Joanna and welcome from me too. I'm sorry things have been so rough for you.

    I don't think a precise diagnosis matters too much as the meds are all the same. I was diagnosed with Stills Disease way back in 1961 but was told that that was because I had all the signs of RA but was under 16 yrs of age. I think nowadays they'd call it JIA but I just say RA as people understand that. I think if your notes say one thing most docs will just pick up on that and look no further.
    What meds are you on? I take a combination of methotrexate and hydroxychloroquine.

    I think you're right, we don't need a title as such just help to live our lives the best way we can.

    Best wishes
    Joanna