In limbo & frustrated with Rheumy's report

tidmusshaz
tidmusshaz Member Posts: 11
Hi all
I recieved a copy of the report sent to my GP today from my rheumatologist & I have to say Im not impressed... In fact I wondered if he was in the same consultation as me. Let me explain -
I had my first flare up or arthritis in my hands in June which resolved after about 4 weeks (just in time for my rheum. appointmet) and rheumatologist felt this was reactive arthritis. Then in November I had another flare starting in my hands and quickly spreading to my wrists, elbows,shoulders, knees & ankles this was extremely severe leaving me virtually housebound. My GP refered me back to the Rheumatologist which took 6 weeks (once again my symptoms began to ease just before my appointment) and he has said that although my bloods were positive for ANA but my ENA/dsDNA profile was negative as was my rheumatoid factor. He said because of this that he thinks I may have palindromic arthritis or Lupus & started me on steroids & hydroxychloroquin, but when I recieved the letter today it says I was 'limping due to ankle pain but there was nothing on examination' when I was actually struggling with walking due to pain in my hips/back which I told him I was not sure was related or not. He says my BP was raised and I had been advised to visit my GP to have this re tested, when my BP was cheched with the wrong size cuff & the result was never mentioned to me AT ALL & that my urine showed blood & protien & needed further testing but 'MAY NOT have been sent to microbiology by the clinic' so I need to do a further sample for testing ASAP (& i recieve this almost 3 weeks after the appointment). & now I have recieved my follow up appointment with the clinic but for a differant consultant. I know its not always straightforward to diagnose but I feel rather frustrated right now.

Comments

  • valval
    valval Member Posts: 14,911
    edited 30. Nov -1, 00:00
    keep a pain diary and take photos of any swelling to give them something to go on it not easy as lots of these arthers act the same most of the time and bloods do not always help to show what is what stay strong we are here if you have any questions val
  • tidmusshaz
    tidmusshaz Member Posts: 11
    edited 30. Nov -1, 00:00
    Hi
    Thanks for your reply. I took a printed list of symptoms and pain & Ive been keeping a diary since my last appointment of stmptoms 7 pain ot of 10. I dont have any visable swelling or redness to my joints just severe pain & stiffness. But did take in photos of rashes I have had that my GP felt may be relevant.
    sharon x x
  • helpline_team
    helpline_team Posts: 2,779
    edited 30. Nov -1, 00:00
    Hello,

    Welcome to Chat to Helplines. If you ever would like us to post you further information about arthritis you can email or private message us your name and postal address. As you seem to be in the middle of getting all of the tests and diagnosis I'd just like to say how very difficult that process sounds. It can be helpful to take any technical questions for further clarification to the rheumatology specialist nurse - especially if the next appointment with the doctor is a way off.

    If you feel you'd like to talk over what's been happening for some informal support you are welcome tor ring us too.

    I hope we can help further.

    Guy
  • tidmusshaz
    tidmusshaz Member Posts: 11
    edited 30. Nov -1, 00:00
    How do I find out if there is a rheumatology specialist nurse & how to contact them?
    when I was seen by rheumatologist I was just given 2 leaflets on the medication & a script & told to return in 4 weeks... when I asked about the palindromic arthritis (id never heard of it before & wanted to be able to look it up) i was just told he would send me a copy of his report & it would be in there...
  • helpline_team
    helpline_team Posts: 2,779
    edited 30. Nov -1, 00:00
    Hello

    In order to find out if there is a rheumatology nurse just ring your rheumy clinic and ask if there is a rheumatology nurse specialist and a contact number for them. For more info on Palindromic arthritis here is a link to our factsheet: http://www.google.co.uk/url?sa=t&rct=j&q=palindromic arthritis&source=web&cd=7&ved=0CFwQFjAG&url=http://www.arthritiscare.org.uk/@3235/Listedbytype/Factsheets/main_content/PalindromicfactsheetJune11.pdf&ei=MWANT6SWJeTk4QTu9LilBg&usg=AFQjCNH7YwjDGwHACCNqLCVuezr4Vdtv5w&cad=rja

    If you need any other info let us know.

    all the best

    Simona

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