Awaiting Diagnosis

Options
traluvie
traluvie Member Posts: 2,579
edited 11. Jan 2011, 07:42 in Living with Arthritis archive
Hi my name is Tracy. I am 31 with 2 children. I started experiencing recognisable pain around August. I was having pain in wrists and finger(next to thumb) and swelling. Doctor thought it was repetitive strain injury at first as i was having no obvious swelling in my other hand(a bit of pain but i thought this was due to me using my left hand more). Doctor signed me off work for 2 wks with diclofenac and Tramadol. By the time i went back to the doctors i felt like it was working it's way around my body..I was generally feeling tired and aching all over, i was experiening terrible pain and heavyness in my shoulders and neck. Doc did bloods(came back normal) an referred me to Rheumatologist in november. He believed i was showing signs of inflamatory arthritis, i had bloods and xrays done and wrote to my doctor to give me the steroid injection. I had the injection 22nd dec and instantly my aches and swelling went down. Over the past week though i have had pains in elbow ankles and the bottom of my feet.. my both hands now can feel kinda sore most days and when i get pains in my knuckles and wrists it can be quite wooooah that hurts lol..
I saw rheumatologist for second appointment yes and he said most of my bloods were normal or borderline and xrays never showed anything. I tried explaining how this was effecting my everyday life and am eager to get back to work. He said that sometimes ppl can experience pain and still get no diagnosis(not what i wanted to hear) He is now going to send me for a bone scan and said that would show if there was any problems with my bones. I really am hoping it will show something up as sometimes i feel well is it all in my head am i over reacting, then i have a bad day then i think well no i shouldn't be feeling like this...
I't s hard to talk to my friends and my partner as i feel like they think i am just moaning an to be honest they don't know how i am feeling... My partner is great around the house and helps me loads and my daughter helps me at times too so i lucky i have that help just be nice to have some understanding and a diagnosis would be great so i can start right medication and hopefully get back to work.
Well i feel better for getting that off my chest, anyone who reads this who can offer any advice or help i would be extremly grateful.. sometimes u feel like your fighting it on your own.
Thanks
th_tn_TisFORTIGGER.jpgxxTracyxx

Comments

  • dreamdaisy
    dreamdaisy Member Posts: 31,520
    edited 30. Nov -1, 00:00
    Options
    I answered on the other forum - I won't type it all again. I could, but I won't! :smile: DD
    Have you got the despatches? No, I always walk like this. Eddie Braben
  • traluvie
    traluvie Member Posts: 2,579
    edited 30. Nov -1, 00:00
    Options
    Sorry lol...

    Will go and have a look.. it didn't look very active on the other forum hence why i pasted on ere.. will go look now..
    th_tn_TisFORTIGGER.jpgxxTracyxx
  • dreamdaisy
    dreamdaisy Member Posts: 31,520
    edited 30. Nov -1, 00:00
    Options
    It's 2.30 on a wet/snowy Friday afternoon, people are busy elsewhere, I guess: this is usually the more lively of the forums, here and CC - I tend to flit all over tho! Anyhoo, I have a heap of ironing to do and a lesson to prepare (I work at home as a specialist tutor for dyslexics). I'll be back later. DD
    Have you got the despatches? No, I always walk like this. Eddie Braben
  • frogmorton
    frogmorton Member Posts: 29,506
    edited 30. Nov -1, 00:00
    Options
    Hi Tracy

    Oh you are not alone - there are loads of us out there suffering like you and as yet having no 'label' to attach to it all. Without that you get less sympathy don't you?

    I am so sorry you are suffering though :sad: your kids must be fairly young too....

    All l can say is that most of us did not get our diagnosis for a while some a very long while (my bloods were and l think still are neg too - but I am told it is infamatory arthritis by the rheumy). I feel very lucky that l am on DMARDs (disease modifying anti-rheumatic drugs. You WILL get there - easy for me to say it takes time, but your symptoms will be familiar to many on here.

    The good thing is you have a lovely husband and kids and you are seeing a rheumatologist.

    I dont know if you have ever kept notes to take with you? You knwo the times and dates of symptoms and duration and other symptoms like tiredness etc? I take a list with me most times.

    The other good thing is you have found US :grin:


    Anything we can help with - just ask and we will try.

    Love

    Toni xx
  • traluvie
    traluvie Member Posts: 2,579
    edited 30. Nov -1, 00:00
    Options
    Hi Toni,
    Thank you for the message, it really is great to be able to talk to ppl and share feelings and stories...
    I have read alot of stories of ppl having negative bloods but still being diagnosed how is that??? my doctor says i have all the signs of inflamitory arthritis but will not diagnose it as bloods and x-rays are unclear... hence the reason for bone scan..
    I have a little diary that i have been writing everything down as i have a terrible memory and i would prob forget so at least i can be more accurate when explaining things to the doctor..
    How was you diagnosed if your bloods all came back clear??

    Thanks again and yeah i am glad i have found you i have some1 to moan too now lol...x
    th_tn_TisFORTIGGER.jpgxxTracyxx
  • caprica
    caprica Member Posts: 195
    edited 30. Nov -1, 00:00
    Options
    Hi there, I'm in the same boat as Toni - all negative on bloods but luckily my doctors never doubted the inflammatory arthritis diagnosis. It did take me about 2 and a half months between my initial rheumatology appointment and starting medication because the severity of my case was a bit unclear so they wanted to spend a bit of time evaluating it and deciding which drug to stick me on. I had xrays, like yours, which came back clear and then I had an ultrasound which again came back showing nothing.
    Despite this, my diagnosis has never been doubted as my doctor seems to go by symptoms. I hope yours does the same. Good luck, I feel for you, it's a really horrible time filled with fear and questions. It does get easier!
  • nanarose
    nanarose Member Posts: 117
    edited 30. Nov -1, 00:00
    Options
    Hi, sorry to hear of all the problems you are experiencing; it's like deja vu for some of us on here, all too familiar I'm afraid. :cry:

    I had negative blood results for a long long time, was treated for fibromyalgia, gout etc, etc, before eventually the tests showed up with high inflammation, and I was given a diagnosis of PsA. This unfortunatly can, depending on your doc/consultant, take some time.

    Don't get downhearted, the symptoms you have are real not imaginary, and keep pushing the docs if you have to.

    I wish you the best of luck, and I'm glad you found this site, the knowledge and support on here is second to none! x
  • traluvie
    traluvie Member Posts: 2,579
    edited 30. Nov -1, 00:00
    Options
    nanarose...
    Thank you for your kind words and already today i am feeling alot better ... reading other ppls stories and having replies from others on the forum has made me feel a whole lot better ..
    nice to know i am not on my own aqnd it's not in my head lol..

    So thanks all..
    th_tn_TisFORTIGGER.jpgxxTracyxx
  • frogmorton
    frogmorton Member Posts: 29,506
    edited 30. Nov -1, 00:00
    Options
    There you go traluvie!!

    Lots of us in teh same boat.

    A good rheumatologist trusts signs and symptoms too. A diagnosis should be based on all those factors. people who do not have RA can have + rheumatoid factor too.

    The notes are good as are other people's input like OHalf and others who can accompany you to appts.

    If they conclude it is sero-neg like us lot they will start you on one of the milder DMARDs.

    Keep asking and we'll keep answering :smile:

    Love

    Toni xx
  • tjt6768
    tjt6768 Member Posts: 12,170
    edited 30. Nov -1, 00:00
    Options
    Hi from me too. Hope you are not suffering too much today..
    I was diagnosed with sero-negative in my hands and wrists in march last year,i have never had any inflammation as such. I've had osteo arthur for many years in knees and spine and to be honest I was just expecting them to day that's what was going on with the hands/wrists.. The rheumy diagnosed it straight away, he did look at xrays and said something about the spacing in the wrists but I'm sure the bloods were normal. Started me on a low dose of hydroxychloroquine straight away.. I was lucky I think as I was diagnosed straight away,i know for others it had taken a long time..

    Best of luck with everything..

    Be well
    e050.gifMe-Tony
    n035.gifRa-1996 -2013 RIP...
    k040.gif
    Cleo - 1996 to 2011. RIP
  • traluvie
    traluvie Member Posts: 2,579
    edited 30. Nov -1, 00:00
    Options
    Hi 2 Tonis... :grin:

    Woke up and feeling rough today... feeling better than this morning so that a gd thing.. tablets have kicked in lol..
    How is ev1 else doing today?
    Funny how some doctors diagnose from symptoms and others from bloods/xrays... why do you think this is?? is it purely down to experience??? My doc says i show all the symptoms of inflamatory arthritis but doesn't want to give me tablets fro RA cause of them being toxic( i understand this) but if i went to another rheumatologist would he prescribe the meds regardless of bloods?? ( not that i am going to do this.. just am curious)
    well i off to have a cuppa and go and play with the kids for a bit while me tablets are working..
    Take care all..x
    th_tn_TisFORTIGGER.jpgxxTracyxx
  • tjt6768
    tjt6768 Member Posts: 12,170
    edited 30. Nov -1, 00:00
    Options
    You too.. Have fun with the kids..
    :grin:
    e050.gifMe-Tony
    n035.gifRa-1996 -2013 RIP...
    k040.gif
    Cleo - 1996 to 2011. RIP
  • speedalong
    speedalong Member Posts: 3,315
    edited 30. Nov -1, 00:00
    Options
    Hi Tracy and welcome, I hope you get some answers soon. A diagnosis would let you know what you are dealing with and hopefully some treatment too.

    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.
  • traluvie
    traluvie Member Posts: 2,579
    edited 30. Nov -1, 00:00
    Options
    Hi Speedy and thank you for your reply..
    I am feeling alot more positive since i have joined the forum, for that i am grateful..
    So i am going try and remain positive and even on bad days like today i am gonna try and smile :smile: lol and hope that my bone scan shows something so i can get a diagnosis.. I'm not gonna stress just take each day as it comes.
    Will keep you posted

    Thanks again.. Take care.. :|
    th_tn_TisFORTIGGER.jpgxxTracyxx
  • RA2010
    RA2010 Member Posts: 21
    edited 30. Nov -1, 00:00
    Options
    Hi Traluvie - found this post! From all posts above it is so strange how all doctors diagnose based on different things! I guess in some cases it is just down to experience. My rheumy prescribed hydroxy and and anti-inflammatory before he had even received any blood results based simply on symptoms. I was negative on RF (so GP had said I don't have RA), but rheumy requested anti-CCP which came back positive and is more specific for RA. My xrays also didn't show a lot besides a slightly narrowed space in one of the joints of foot (but then in early days I guess it is likely that no erosion has happened yet, which is good and the whole point is to try and prevent it)....he didn't seem to be in any doubt that it was RA..

    I do also have really bad pains in my ankle at the moment, so waiting for a steroid injection for that (haven't had one of those yet - how was it?)
  • traluvie
    traluvie Member Posts: 2,579
    edited 30. Nov -1, 00:00
    Options
    RA2010..

    My rheumy also prescribed the steroid injections on symptoms but reluctant to give me RA meds as my bloods were clear asos and thyroid was slightly abnormal..xrays ok and ultrasound no clear swelling but likek you say in early days erosion will not be visible....
    I had the steroid injection into the muscles(bum cheek).. since having it i have felt alot better in regards to inflamation and general achiness but am still experiencing the sharp pains.. i am happy to feel liek this though as it was better than what i was feeling before lol.. :smile:
    I hope it will help you.. even if it makes you feel a bit better at least that better than before.. When are you due to have it?

    Tracy
    th_tn_TisFORTIGGER.jpgxxTracyxx
  • RA2010
    RA2010 Member Posts: 21
    edited 30. Nov -1, 00:00
    Options
    Hi there - not sure yet. Apparently will be in the next couple of weeks. Will be into my ankle (ouch!) as that is the main problem at the moment....

    I was on methotrexate from Nov until just before Christmas when it caused white blood cells to fall to really low levels and was then taken off it. Rheumy is planning on starting me on leflunomide but wanting to wait until bloods settle down as still not entirely normal...found meth worked really well for me, so pity. Didn't really have any side effects and had very little pain after only a month! Must still be a bit in my system as symptoms still haven't returned in full force (only ankle - on a continuous basis!)...
  • traluvie
    traluvie Member Posts: 2,579
    edited 30. Nov -1, 00:00
    Options
    Just think it will only sting for a minute .. look away and think of something nice.. :grin::grin: hopefully you wil feel better from it you will have to keep me posted on how you get on with it.. and at least you are not having a serious bout :smile: ..xxxx
    th_tn_TisFORTIGGER.jpgxxTracyxx
  • tillytop
    tillytop Member Posts: 3,460
    edited 30. Nov -1, 00:00
    Options
    Hello Traluvie

    Just to let you know I have posted a reply on the "say hello" forum before I saw that you had also posted here.

    Love Tilly xxx
  • traluvie
    traluvie Member Posts: 2,579
    edited 30. Nov -1, 00:00
    Options
    Thanks Tilly

    have replied...xx
    th_tn_TisFORTIGGER.jpgxxTracyxx