Yipppeeeee!!!!!!

pickle
pickle Member Posts: 21
edited 27. Jun 2012, 06:10 in Living with Arthritis archive
Today I am really happy becauswe I think I might actually have found a consultant that knows his elbow from his teacake :D After years of receiving hardcore therapies (meth and biologics) I had to stop the drugs because they were making me ill. My consultant announced that I had osteo, no inflammation (despite blood tests showing the opp). It was all down to fibro and a bad back and sorry this was going to 'ruin your life', but there was nothing he could do. After asking for a second opinion I have now been told I have Palindromic Rheu, Fibro, Osteo in my spine and...Hypermobility Syndrome! HS totally explains all of those symptoms I didn't understand BUT most importantly, it shows I'm not crazy! It wasn't all in my head! I cannot explain to you the relief :) It was a long road but I'm so so so so relieved. It now also means that I may get further treatment. My new consultant was horrified that the HMS had been missed even though I kept displaying the symptoms. Still, onwards and upwards :)

Comments

  • mig
    mig Member Posts: 7,154
    edited 30. Nov -1, 00:00
    Its good when you get some-one that knows what they are talking about,well done.Mig
  • Numptydumpty
    Numptydumpty Member Posts: 6,417
    edited 30. Nov -1, 00:00
    I am very pleased for you. I hope you now get some treatment that works!
    Wishing you well
    Numpty
  • phoenixoxo
    phoenixoxo Member Posts: 625
    edited 30. Nov -1, 00:00
    This is excellent news, pickle :D

    It sounds like you've had a frustrating time, so it's great that seeking a second opinion has proved so worthwhile. I hope your new consultant will provide the treatment options soon, and good luck!

    Best wishes,
    Phoebe
    PsA (psoriatic arthritis) and other things since 1990. Happy to help when I can :-)
  • earthspirit
    earthspirit Bots Posts: 278
    edited 30. Nov -1, 00:00
    yippeeee! to you too :lol:
    i have been there round the consultants, feeling like they thought i was a total liar & or hypocondriac.

    i know how good it feels to get a diagnosis and you can smile rather than get totally stressed over the diagnosis.

    NOW you know whatever fight you got ahead - you know what you are treating and how to go about having a better quality of life.
    the palindronic RA is certainly much better than having full blown RA and with any luck, even without drugs, it might just take a hike for a good long while of your life. i hope this is how it affects you.

    hope that the positivity you are feeling right now gives you the mental strength to deal with the naughty bits you gotta deal with.
  • babytiger
    babytiger Member Posts: 360
    edited 30. Nov -1, 00:00
    Its a great feeling when you get someone that actually knows what they're doing
    Eileen
  • bubbadog
    bubbadog Member Posts: 5,544
    edited 30. Nov -1, 00:00
    Glad you got the answer you where waiting for and now you can live your life and sort meds out that will help you.
  • jaja
    jaja Member Posts: 135
    edited 30. Nov -1, 00:00
    Hi pickle.....thats great news....chance you might get some relief now....what are the symtoms you get for HMS...?

    jaja
  • tjt6768
    tjt6768 Member Posts: 12,170
    edited 30. Nov -1, 00:00
    that must be a great relief mi dear..
    Lets hope they can start sorting some kind of treatment for you :D
    e050.gifMe-Tony
    n035.gifRa-1996 -2013 RIP...
    k040.gif
    Cleo - 1996 to 2011. RIP
  • pickle
    pickle Member Posts: 21
    edited 30. Nov -1, 00:00
    Thank you for all of the kind support. I notice that I somehow managed to post this thread twice though, sorry about that :oops:

    Jaja: The symptoms I get for the HMS are quite random and many of them I had put down to just being odd. I have the usual syptoms like most of my joints are way bendier than the should be, this was more noticeable when I was younger but, it still does affect me. I don't dislocate (so far) but I do subluct (sp?) which is when the joint almost dislocates but not fully. this is mostly in my ankle and shoulder and has been made worse by repeated injury. I also have bowel problems that have been very difficult to diagnose in the past but now make total sense when taken in the context of the HMS. One set of symptoms that I had not really realised were part of the HMS were neuropathic pain, low blood pressure and a host of other random stuff. And pain of course, lots and lots of pain.
    This link give more info: http://www.hypermobility.org/whatishms.php and there is a fair bit on the web if you google it. Hope this helps. Pickle x
  • skezier
    skezier Member Posts: 11,333
    edited 30. Nov -1, 00:00
    Hi Pickle,

    Really glad that you have, at last, got someone to listen and try and help you. Long may it last and so glad for you as well :D Cris x
  • frogmorton
    frogmorton Member Posts: 30,086
    edited 30. Nov -1, 00:00
    Hi Pickle

    Great news there :)

    Now hopefully you will get treated appropriately?

    The HMS info was interesting too thanks for that.

    Love

    Toni xxx
  • elnafinn
    elnafinn Member Posts: 7,412
    edited 30. Nov -1, 00:00
    So pleased for you Pickle that after all this time you now have a diagnosis that appears to fit your symptoms and a good consultant that you can work with together as a team.

    I read this article in the Telegraph on Monday:

    http://www.telegraph.co.uk/health/9349660/I-feel-brain-fogged.-Its-a-cruelly-deceptive-illness.html

    Elna x
    The happiest people don't have the best of everything. They just make the best of everything.

    If you can lay down at night knowing in your heart that you made someone's day just a little bit better, you know you had a good day.

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