~Hello~Another Newbie~Needing Your Advice Please~

NSM7578
NSM7578 Member Posts: 3
edited 23. Jun 2011, 18:05 in Say Hello Archive
Hi everyone,

Firstly may I offer my support to anyone that I can. I don't know if I have any form of Arthritis, but after suffering with the amount of pain and discomfort etc that I have, then I hope that I can be of some support/help/comfort etc.

For the past few years I've been suffering with ever increasing joint pain, predominantly in my knees, hips, jaw and lower back and occassionally in my elbows and wrists. With the increased pain I've been taking increased doses of MST and Oramorph for breakthough pain.

I've had various bloods including Lupus, Rheumatoid Factor and CRP which have shown high levels of both Rheumatoid Factor and CRP. I've also had x-rays some several months ago, but still not had the results through (which is another story!!).

I've now been discharged twice from what I understand is one of the best Arthritis Hospitals in the UK and on the last occassion, was left under the care of my Neurologist?!?

I was told by the first "Specialist" at the afore mentioned hospital that my Rheumatoid Factor and CRP were both considerably high, but because I don't have some of the other physical symptoms such as inflamed joints etc, that I didn't have R.A but that there was nothing that he could do, as it would develope later. I was discharged, but refered straight back by my wonderful GP.

The next "Specialist" I saw again at the same hospital, did the same blood tests and x-rays (upon my request). As far as I'm aware, the bloods were the same and the x-rays... well I don't know. I didn't here anything from the hospital for several months, when I contacted them about my follow up appointment I received a letter informing me I'd been discharged. My GP is sending me back again as I'm "not right", but I'd rather find another hospital or at least be "armed" before my next appointment.

I recently turned 33, have to use a stick, often have to have days in bed to re-coup from trying to work full time and can't see how this is going to get better.

It might not be Arthritis and for those of you who are suffering and reading this and thinking what is she going on about, I'm very sorry, but I just needed to share my experience with those of you who have gone through the process.

I'd be grateful of any help please.

Many thanks for your time and help.

Comments

  • dreamdaisy
    dreamdaisy Member Posts: 31,520
    edited 30. Nov -1, 00:00
    We are not doctors so cannot possibly judge what is happening with you, but given the fact that you have recorded a high RF and CRP levels, well, surely it's some form of inflammatory arthritis and that is all anyone needs to know in order to get you started on some meds to try and control it. Do you know what your ESR measure was? (That's another inflammation marker). My first diagnosis was 'inflammatory arthropathy' or 'inflammatory arthritis' (can't remember which :oops: ), I have never had a positive RF but my CRP and ESR used to be quite high, in the 160s - 180s. They have now narrowed mine to PA (psoriatic arthiritis) and I have OA too.

    I hope you are able to see a different rheumatologist who may have a more open mind as to what is happening to you/with you. I wish you well. DD
  • tjt6768
    tjt6768 Member Posts: 12,170
    edited 30. Nov -1, 00:00
    Just wanted to welcome you to the forum. Sounds like you've had a rough & confusing time.. As DD mentioned, doctors we ain't, but it does seem as though you have some form of this plague..
    I hope that you can get some kind of answers soon.. Keep fighting for them.

    Keep us up to date with thing hun, and I hope that you are not suffering too much today..

    Be well
    :grin:
  • NSM7578
    NSM7578 Member Posts: 3
    edited 30. Nov -1, 00:00
    Hello dreamdaisy and thank you for taking both the time to read and reply to my message.

    Unfortunately I can't remember what either of my levels were I'm sorry, I just remember bits of what the doctor/consultant said.

    I hope you don't mind me asking, but is PA something to do with Psoriasis?

    I'm sorry to hear about your conditions and hope that you're winning the battle?

    My GP has refered me again, so I am currently doing some homework as he's given me the option, through Choose and Book, to go elsewhere. The trouble is, am I jumpning out of the frying pan and into the fire?!?


    tjt6768 thank you for your welcome to the forum, it's appreciated!

    One doesn't like to think that you're having a rough time, but it's definitly not been fun :smile:

    It might seem silly, but until I have a diagnosis I don't go looking things up, but quite a few people have said that they think that I have "some form of this plague" like yourself.

    I hope that you are well to and thank you for your time.

    Take care all xx
  • liesa
    liesa Member Posts: 821
    edited 30. Nov -1, 00:00
    Hya and welcome, sympathy and support sometimes is like medication, knowing others share your pains and discomforts a strange feeling but a good one, i have suffered from Palindromic Rhuematism for over 25 years now and have always been told i have the RA factor and it was in the early stages, later on i have had a total knee replacement left knee and really painful right knee as well as right hip... not a lot shows up on scans or xrays but i can handle that as do my family they can see how much my pain debilitates me
    my hands/fingers swell but dont often notice any other swelling,
    i get sore feet/ankles, i get plantar fiscilitis from time to time which is crippling, tennis elbow in both my elbows now which is really painful to lift things up or hold phones for a long time...

    anyway welcome xx
  • dreamdaisy
    dreamdaisy Member Posts: 31,520
    edited 30. Nov -1, 00:00
    Yes, psoriatic arthritis is related to psoriasis (which I very rarely have). Am I winning the battle? No, and I never will. What meds I have been given are far too little and far too late. For the first five years my GP kept telling me that my fat left knee would deflate of its own accord. She could not recognise an inflammatory arthritis-type condition despite my health history of over-active immune system problems. I lost the battle between 1997 and 2002, thanks to her and I didn't even know I was fighting one. DD
  • taffygirl
    taffygirl Member Posts: 8
    edited 30. Nov -1, 00:00
    Hi, would like to say hello i'm very new here, but think this is a really good site, i have sjogrens syndrome and a lot of your symptoms are very similar to my own, i get very tired and right now am experiencing a burning pain in my arms and knees and have been for the last couple of days, but it seems there are a lot of us out there so lets keep on supporting each other. x

    taffy girl x
  • traluvie
    traluvie Member Posts: 2,579
    edited 30. Nov -1, 00:00
    Hi and welcome from me too...

    I'm quite astounded to hear the rheumatologist has told you to just get on with it, that is awful, it's a good job your Gp believes you and is reffering you again.. I def would opt to go somewhere else.. It is not fair that you have to keep suffering like thois just because you have no swelling?? that crazy..
    i was opposite way round, i had swelling and pain but nothing showed up in my bloods, it was only because my rheumy believed me that he did thorough investigations and gave me a bone scan which showed i had inflammatory arthritis in many joints..
    I really hope the new rheumy helps you and gets you on the right rd for treatment as soon as.. Hopefully you will then feel some benefits..
    xx
  • bubbadog
    bubbadog Member Posts: 5,544
    edited 30. Nov -1, 00:00
    Hi, welcome to the forum, hope you enjoy it as much as I do. :smile: Amanda/bubbadog.
  • Ankyspond
    Ankyspond Member Posts: 626
    edited 30. Nov -1, 00:00
    Hi,
    I am new too and it took over 18 years for me to get my diagnosis (AS), please don't give up and keep insisting to be seen by a rheumy until you get some answers.

    Good luck, here to talk if needed.

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