newly diagonsed..well sort of diagonsed with OA

kimjessnella
kimjessnella Member Posts: 18
edited 31. Oct 2010, 05:22 in Living with Arthritis archive
Hi All
I have recently joined this site and been told this is a good place to come and get helpful info about this condition.
I have recently been diagnosed with arthritis and until last Thursday was told it was osteoarthritis but I saw the plastic surgeon again who is unsure it is due the location and severity of the damage caused in less than a year.
I saw a rheumatologist in Sept who was a "well you have this and not much we can do" but last Thursday the Plastic consultant gave me so much more information and seems to have cast doubt on whether it is OA or a possible other form.
I first saw a plastics surgeon to have a lump removed on my finger that appeared and no one seemed to know what it was. I was later told this was a node and there was very little cartilage left in the space of the joint. This started the diagnosis for OA.
I have had bloods and xrays taken of my hands and feet which show varying degrees of damage.

My arthritis effects the knuckles on all my fingers but at the moment top knuckles only so the plan is to gradually fuse all the top knuckle joints when the pain gets to much though reading about this today as put me right off having this done. The consultant wants to fude the most painful joint ASAP.
I was wondering if anyone else here has had this op.

I worry about how this will affect me as a mum and worker as I know so little about the condition; it was only recently I discovered there are so many forms of it.

I struggle with things like tying laces and doing buttons which is a night mare when I have a 4 yr old to dress.

Any information or helps and tips would be amazing.
Many thanks for reading this
kim x

Comments

  • alarkra
    alarkra Member Posts: 213
    edited 30. Nov -1, 00:00
    Hi Kim,
    Sorry to hear that you are having a testing time at the moment. I have RA so can't help you with any advice on this one. However, I know that someone will be along shortly who can help you with some friendly advice, I'm sure. ((HUGS)). :wink:
  • dorcas
    dorcas Member Posts: 3,538
    edited 30. Nov -1, 00:00
    Hi Kim and welcome to the forum :D

    I have PA (psoriatic arthritis) and have had hand surgery including a wrist fusion but have no knowledge or experience of knuckles being fused.... sorry!

    I'm not sure from your post if the x rays you've had have confirmed the OA diagnosis or shown that you have RA or another form of inflammatory arthritis .... or perhaps your consultant and docs are now waiting for the results of the blood tests before they can confirm diagnoses:?:

    Will the surgical options be influenced by the type of arthritis that you have?

    Sorry I'm asking more questions !!!

    Hopefully, as alarka said, there'll be others along who may know about this surgery and can advise you.

    Iris xxx


    :wink:
  • kimjessnella
    kimjessnella Member Posts: 18
    edited 30. Nov -1, 00:00
    To be very honest I am confused over the whole thing really as I was told it was OA by the rheumatologist then the plastics consultant has told me for the report by the rheumatologist this is showing she is not fully convinced it is OA.

    I am showing the physical signs of OA but at a much faster rate of wear to the joints. I had no problems up until just over a year ago when I developed a fluid filled lump on my finger then a bony growth thing.
    I had an xray taken last November which shown the problem with cartlige in the joint, this resulted in an op to remove the node and now it seems a little confusing as to what is happening.

    His plan has been to do more bloods as some results are missing then see me again to discuss these results and the bone fusion. He is also going to sort another appointment for me to see the rheumatologist ASAP.

    In my head I had a confirmed diagnosis of OA but since Thursday I am now at a loss what to think.
  • valval
    valval Member Posts: 15,897
    edited 30. Nov -1, 00:00
    hi welcome it is so confusing trying to find out what wrong the trouble is so many are very alike and it takes time for them to decide or rule some out and others in they will get there and get you the treatment you need. just try to go with the flow, easyer said than done i know .
    keep a pain diary of stiffness pain where when how long lasts what helps then you will have information for them and answers to there questions when they ask them.
    good luck val
    val
  • dorcas
    dorcas Member Posts: 3,538
    edited 30. Nov -1, 00:00
    Hello again Kim,

    Sounds as though things are a bit up in the air.... but hopefully all will become clearer when you next see the Rheummy with the x ray and blood test results to hand.

    That's a good idea that Val's suggested :wink: keeping a daily diary of how your joints are; swelling, redness, stiffness, pain (and how long these symptoms last) can be of great value to the rheummy as it shows patterns to your condition and contributes to a diagnosis.

    keep posting Kim.... waiting for a diagnosis is confusing and there are many of us on the forum who have gone through the same worrying process and can support you through this time. :D

    Iris x
  • speedalong
    speedalong Member Posts: 3,347
    edited 30. Nov -1, 00:00
    Hi Kim and welcome, until you have the blood test results back you won't really know what you are dealing with. Do you know when they will have the results and feedback to you?

    Which finger is the most painful joint on? Are you left or right handed? Are both hands equally painful? Is fusion your only option? From what I have learnt on this forum, fusion ends the pain in the joint, but it also leaves it unmovable. Has the consultant said at what angle he wants to fuse the joints? ie with the fingers slightly angled (hand bent) or with the fingers out straight? It is amazing how we adapt to using our bodies differently to limit pain/due to restricted movement. I think you should ask him/a physio how it will affect your hand function.

    Once again more questions than answers!! Sorry.

    Speedy
    I have had OA since mid twenties. It affects my hips and knees. I had a THR on the left aged 30 and now have a resurface-replacement on the right - done May 2010.
  • kimjessnella
    kimjessnella Member Posts: 18
    edited 30. Nov -1, 00:00
    HI Speedy
    There have been some blood tests done and this has come back with negative for RA but more are now being done. I am also confused as i don’t understand how according to the consultant you can have a negative blood test for RA but still have it. He has mentioned the other blood tests his is doing but tbh I have lost a lot of that information just trying to process it all so far.
    The knuckles effected all on both hands..all fingers to some degree equal on both hands. All my fingers have large bony knuckles on top joint and are painful though the fingers closet to the thumb are effected most.
    The consultant explained to me it will stop the pain and as it is the top finger joint it will not affect the movement.
    I will be seeing him again in about 6 weeks to discuss thus further.

    I know I sound confused but that really is because I am, I feel I have had information thrown at me without a real explanation and told to wait and see, then a diagnose I thought I had now seems may not be what it is.
  • kimjessnella
    kimjessnella Member Posts: 18
    edited 30. Nov -1, 00:00
    Thank you all for your help so far it is helping so much to know this is a very normal way to feel...I did start to wonder was a really just over reacting and should really stop stressing and well get on with things.

    I will take up the idea of a pain diary at the moment the pain is there all of the time in my worst effected fingers and worse if i knock it or my little girls squeezes it tightly.
    I have taken to wearing gloves even in milder weather as that seems to help.
  • dorcas
    dorcas Member Posts: 3,538
    edited 30. Nov -1, 00:00
    Kim,

    It is very confusing..... but the more you learn about arthritis the clearer it becomes.
    There are many forms of arthritis in addition to OA and RA .
    Some of them, as your doc said, do not have a positive RA factor. They are collectively called sero-negative arthropathies.

    Once you have a clear diagnosis then you'll know what you're dealing with! There is good information in the 'Publications and Resources' section of this website on each type of arthritis....... and of course there are a lot of us on the forum who'll share knowledge and experience. :wink:

    At least you'll know you can ask anything on this forum... and although we don't always have the answers we can still offer support and a listening ear. :D

    Iris xx
  • chris7
    chris7 Bots Posts: 2,696
    edited 30. Nov -1, 00:00
    Hi Kim

    Just wanted to add a welcome and to acknowledge your post. It does all sound very scary and unsettling for you there at the moment. I do hope you get some answers and reassurance soon so you can get started on the right treatment. Hang in there and keep posting.
    take care
    Chris
  • tjt6768
    tjt6768 Member Posts: 12,170
    edited 30. Nov -1, 00:00
    HI Speedy
    There have been some blood tests done and this has come back with negative for RA but more are now being done. I am also confused as i don’t understand how according to the consultant you can have a negative blood test for RA but still have it. He has mentioned the other blood tests his is doing but tbh I have lost a lot of that information just trying to process it all so far.
    The knuckles effected all on both hands..all fingers to some degree equal on both hands. All my fingers have large bony knuckles on top joint and are painful though the fingers closet to the thumb are effected most.
    The consultant explained to me it will stop the pain and as it is the top finger joint it will not affect the movement.
    I will be seeing him again in about 6 weeks to discuss thus further.

    I know I sound confused but that really is because I am, I feel I have had information thrown at me without a real explanation and told to wait and see, then a diagnose I thought I had now seems may not be what it is.

    Hi Kim, I won't be too much help as I am also newly diagnosed with RA, I've had OA for a few years now, but the RA I have doesn't show up in blood tests, it's called sero-negative arthritis.. I have it in my wrists.. I don't know too much about it but it could be the explanation as to why your test was negative?

    Welcome to the forum too.. It's very informative on here, and if you go to the 'chit-chat' part there's a light hearted side to it all too..
    Tony
    e050.gifMe-Tony
    n035.gifRa-1996 -2013 RIP...
    k040.gif
    Cleo - 1996 to 2011. RIP
  • frogmorton
    frogmorton Member Posts: 26,669
    edited 30. Nov -1, 00:00
    Hiya

    Think i saw you on the say hello forum - hello again.

    My theory is I cant help with diagnosis so we have to sort out four year old and helping her and you to care for her.

    first of all has she a stepping stool? they are great for getting them nearer to you for ease of access! and so she can do more for herself. (she is a she isn't she/ :oops: )

    Get shoes with velcro - a new pair maybe and you can get laces made of elastic so they are 'permanently tied' and more of a slip-on shoe.

    Buttons are a night mare and well worth avoiding where possible. Some can be changed to velcro if you know anyone who can sew. elastic waistbands are a good idea and putting a keyring thingy on zips helps to do them up too.


    Will keep thinking.....

    Love

    Toni xx
    Love

    Toni xxx