Hi - newly diagnosed (sort of ...)

gt43
gt43 Member Posts: 14
edited 11. Mar 2013, 13:46 in Say Hello Archive
Hello!

I'm Carole, not long turned 50 and just diagnosed with "relapsing inflammatory arthropathy" (although as far as I'm concerned it's been all relapse and no remission since the start of this year). I've had problems with my back and other joints on and off since my teens, and Graves disease since 2007, with one brief period of remission before it relapsed again. My Graves doesn't respond terribly well to the anti-thyroid drugs, and has needed high doses long term, to gain any sort of control.

In September last year, feeling at an all-time low despite thyroid levels being apparently normal, my endocrinologist decided that I was probably having a lupus-type reaction to the drugs (PTU being known to sometimes provoke other immune problems). Despite this, he decided to keep me on the same dose until early December, when we would start to reduce it. I reluctantly agreed to plough on until then, but unfortunately, due to a clinic cancellation this appointment was put back to mid-March. All my blood tests were coming back normal despite me feeling terrible and having the utmost trouble staying in work, nothing to back me up bar things that they put down to false positives - a bit of inflammation once; borderline RF once; P-ANCA (this has been consistent, but they think due to the drugs); and "one other thing", which they didn't consider important enough to tell me.

When, in desperation, I insisted on seeing an endocrine registrar, he took a look at my swollen, red knuckles and feet and pronounced that there was nothing wrong, no way I could have any sort of arthritis as there was nothing in the blood tests to support it. My GP said the same, but gave me a private referral where the doctor I saw took a full history including my history of wrist, back and neck problems ... by this time I'd been off work for 2 weeks with joint pain, stiffness and exhaustion, and there was no mistaking the swelling in my hands. He thinks probably psoriatic arthritis, and I'm so very, very grateful for somebody having taken it seriously for the first time ever!

But, also very confused - I think, being so relieved to have a proper diagnosis, I'm afraid it will be taken away when my blood results come back negative yet again. It sounds wrong to be hoping to have bad things in the blood test results, but after all this time, I do hope for that. Also, the possibility that this might have been caused or made worse by the thyroid medication upsets me - the uncertainly is agnonising, I'm iller now than I ever was with the overactive thyroid, and if that was the case I'd swap it back in a tachycardic heartbeat!

How do people cope with the uncertainty, pending a proper diagnosis? Is it possible to have "something", be feeling really dreadful, struggling with normal life, and yet still have no real indication in the blood results?

Anyway, thanks for reading all that if you got this far!!

: )

Carole

Comments

  • stickywicket
    stickywicket Member Posts: 26,239
    edited 30. Nov -1, 00:00
    Hello Carole. It’s nice to meet you. You sound to have had a lot going on there for some time. I’m glad you finally look like getting a proper diagnosis for the ‘potential arthritis’ element of your troubles. Unfortunately, it can take a long time for quite a lot of people if the bloods don’t oblige. How do they handle the uncertainty? Well, if you read some of the posts on here you’ll realize that no-one finds it remotely easy. I was ‘lucky’ in that I’m classic RA and easily diagnosed.

    The ‘sort of’ good news is that there are forms of arthritis that are sero-negative and Psoriatic Arthritis is one of them so the fact that your bloods don’t play ball won’t rule it out by any means. Hopefully, you’ll soon get started on some meds that will make a difference. Meanwhile, stick with us. Between us we’re pretty good at support and info (on Living With Arthritis) – and a few laughs (on Chit Chat).
    "The deeper sorrow carves into your being the more joy you can contain." Kahlil Gibran
  • villier
    villier Member Posts: 4,426
    edited 30. Nov -1, 00:00
    Hi Carole

    Welcome and pleased to meet you, it is OA I have although I think I may have some other kind of arthritis going on as well as my bloods show inflammation all the time and am now getting investigated by a rheumatologist, like yourself it has taken quite a journey to get there. I totally understand how you are feeling, stick around, most people hang about LWA and chit-chat feel free to join in, it's not all doom and gloom, hope to see you around...........tc...................Marie x
    Smile a while and while you smile
    smile another smile and soon there
    will be miles and miles of smiles
    just because you smiled I wish your
    day is full of Smiles
  • gt43
    gt43 Member Posts: 14
    edited 30. Nov -1, 00:00
    Thanks, both! Such a mixture of confused emotions, and trying to sort the facts ... well, I guess only time will tell, but it's great to have found the forum, and people who've been through it all (and worse) before.

    :)
  • barbara12
    barbara12 Member Posts: 21,090
    edited 30. Nov -1, 00:00
    Hello Carol and welcome
    Im so glad you have joined us,there are many on here including myself that have had a battle to find out what is going on with there joints.
    I say this to everyone that it is good to talk to people that understand some of what you are going through.
    Any questions just put in LWA...and if you want a laugh come and join us in chit chat x
    Love
    Barbara
  • omelia
    omelia Member Posts: 16
    edited 30. Nov -1, 00:00
    hi carole welcome to the forum seems you have had one heck of a time haven't you. i have osteoarthritis all through my body i know what you mean by saying how tired you are. pain really exsorts you mentally and phyically i hope your diagnosis is sorted out arthritis is a hard one to diagnose :wink:
  • gt43
    gt43 Member Posts: 14
    edited 30. Nov -1, 00:00
    Thanks again, everyone - what a great bunch you are!!!!

    I plucked up courage to get the next lot of blood tests done, so waiting on those results ... meantime, the nice rheumatologist I saw privately prescribed Naproxen, which is helping. I have a couple of questions about that, which I'll post in LWA.

    I gather it can take a while to find out what's going on ... even once the NHS appointment comes through :roll:

    Carole