Hello new here

greybear
greybear Member Posts: 8
edited 8. Jun 2012, 07:52 in Say Hello Archive


Hello I'm Lorraine and I'm new here. I have not been diagnosed with arthritis although my GP did suggest once I may have rheumatoid arthritis but a very unhelpful rheumatologist dismissed this totally as I didn't have rheumatoid factor in my blood.

However my sister has been diagnosed with seronegative arthritis and I am not sure if there is a family link and if I should persue this with my doctor.

I have suffered for the last 15 years with muscle/joint pain and aches. I have been tested for thyroid disorder, cushing's disease. I have been told that it could be fybromyalgia, lupus, ankylosing spondylitis, rheumatoid arthritis etc etc. My blood tests have shown nothing other than a low vitamin d level (only slightly low).

I have had a total hip replacement at age 53 but was told that I had had congenital hip dysplasia but had somehow had no problems all my life! I would also mentiion that there is an awful lot of ulcerative colitis in my family and that I had it myself in 1983 but it has been in remission for about 20 years now.

Would love to hear from anybody else who has had similar problems or who has seronegative arthritis like my sister.

Thanks everyone

Comments

  • dreamdaisy
    dreamdaisy Member Posts: 31,557
    edited 30. Nov -1, 00:00
    Hello, it's lovely to meet you and I suspect you have come to the right place for help and support. I reckon you were very unlucky with the rheumatologist that you met, I think a second opinion would be worthwhile. An auto-immune type of arthritis can be very hard to diagnose, it can take time and many tests to establish what is what but it can be done. I have had a big week-end and I am very tired, I'm off now but I will come back tomorrow with better thoughts. DD
    Have you got the despatches? No, I always walk like this. Eddie Braben
  • stickywicket
    stickywicket Member Posts: 26,326
    edited 30. Nov -1, 00:00
    Hello and welcome from me too, Lorraine. I think you're doing the best thing in chasing this up. We have a few sero-negative people on here but you're more likely to find them if you copy this thread onto the Living With Arthritis forum as more people look on there.

    Would it be possible for you to ask to see a different rheumatologist? Your sister's might be a good bet but, I guess you might live in different parts of the country. Did you manage to get the Vit D levels sorted?

    I hope some of the others will be able to help you. (I'm classic RA).
    If at first you don't succeed, then skydiving definitely isn't for you.
    Steven Wright
  • greybear
    greybear Member Posts: 8
    edited 30. Nov -1, 00:00
    thank you both so much for your quick replies! It is very nice to talk to you. Yes i am taking vitamin d now which has helped a lot but still has done nothing for the pain and aching i constantly suffer. I think it may be possible to see the same rheumatologist as my sister as we do live quite close to each other so i could go to her hospital. Both my sister And ì have had ulcerative colitis so wonder if there is a link as that too is autoimmune. Think i must get back to doctor!
  • stickywicket
    stickywicket Member Posts: 26,326
    edited 30. Nov -1, 00:00
    I think it's something you need an answer to, isn't it? You may find that you don't have an auto-immune form of arthritis. That could then be crossed off your 'What's causing these symptoms?' list and you could move on. On the other hand, if you do have it, you really need to know so that you can begin treatment. I would imagine your sister's rheumatologist might at least be more likely to take you seriously. I do hope you can get some answers.
    If at first you don't succeed, then skydiving definitely isn't for you.
    Steven Wright
  • greybear
    greybear Member Posts: 8
    edited 30. Nov -1, 00:00
    thank you yes i think my sister's rheumatologist is the way to go. Could be a long process but will keep you informed
  • clanckyclara
    clanckyclara Member Posts: 32
    edited 30. Nov -1, 00:00
    Hello and welcome,
    It seems like you have already had some great advice and I hope it goes well for you.
    I've only recently joined the forum and they seem like a friendly and relatively harmless lot here :lol:
    If I'm feeling lonely or taking a break between jobs I trawl through the various forums to see what is happening - it can be a laugh and also very informative.
    Good luck
    Judy
  • greybear
    greybear Member Posts: 8
    edited 30. Nov -1, 00:00
    hi Judy yes it all seems very friendly here and i will definitely keep in touch on here. Even if it turns out not to be rheumatoid arthritis in my case at least it will give me more insight into the problems my sister is having. Hope you are keeping reasonably well. Lorraine x
  • frogmorton
    frogmorton Member Posts: 26,874
    edited 30. Nov -1, 00:00
    Hi Lorraine

    Welcome to the forums from me too :D

    I hope you find them as helpful as I have.

    I have negative bloods too - so totally understand your issues. Luckily for me teh Gp saw enough that he referred me to rheumatology straight away and from there I have been treated.

    My advice would be to try again and see a different rheumatologist if you can

    Love

    Toni xxx
    Love

    Toni xxx
  • greybear
    greybear Member Posts: 8
    edited 30. Nov -1, 00:00
    thanks Toni its nice to meet v. Glad not are on the road to being treated. Yes thats what i am planning to do now. I am going to see if i can get referred to the same rheumatologist that my sister is seeing. Meanwhile i look forward to talking to everyone on the boards x x
  • frogmorton
    frogmorton Member Posts: 26,874
    edited 30. Nov -1, 00:00
    Oh I am pleased

    I admit I have been very lucky as this sero-neg malarkey is difficult to diagnose. Maybe your Sis will come with you to the appointment? Hope to see you joining in :)

    Love

    Toni xxx
    Love

    Toni xxx
  • fowls48
    fowls48 Member Posts: 1,357
    edited 30. Nov -1, 00:00
    welcome lorraine


    sorry cannot help you .

    karen xx
  • Colin1
    Colin1 Member Posts: 1,769
    edited 30. Nov -1, 00:00
    Hello Loraine and welcome to the forum
    Colin
    WHEN GOD GIVES YOU LEMONS MAKE LEMONADE
  • olivergillie
    olivergillie Member Posts: 2
    edited 8. Jun 2012, 12:21
    Hallo Lorraine,

    You say your vitamin D is low but not all that low. Some doctors go by old definitions. An article in International Journal of Rheumatic Diseases (Haroon and Regan 2010) written by experts from the University of Cork, Ireland, suggests that levels of vitamin D should be over 75 nmols/l (nanomoles per litre) and, in over 65s, better if it is over 100 nmols/l. The article is called "Vitamin D deficiency: the time to ignore it has passed". I can send you or anyone else the article if you email me at {email address deleted} Vitamin D has been found to be effective in ending or diminishing pain in muscles and joints. I would also like to recommend some very good value convenient vitamin D microtablets but am not sure if I am allowed even to mention this here.
    cheers, Oliver