New and Undiagnosed

[IsobelBrown54]

Hi everyone,

I’ve had osteoarthritis for some years, in knees and wrists. A couple of months ago I had severe pain in both wrists which went down into my hand and fingers. Holding anything was difficult. After a week or so I saw my GP, who referred me to rheumatology consultant, did a blood test and ordered xrays. The blood test didn’t show inflammatory markers. I’ve had no feedback from xrays and am on a long waiting list to see consultant. After 6 weeks my wrists went back to usual weakened, but useable state. Now after another 3 or 4 weeks, I’m having pain in both shoulders, and am really wondering if I might have RA. My older sister was diagnosed with RA, Lupus, Diverticulitis and Chronic Lymphocyte Leukemia 18 months ago. Any thoughts, anyone?

[oldtimer]

Typically - if there is anything typical - the joints involved with stiffness, redness and swelling in Rheumatoid Disease are the metacarpal/phalangeal joints where the fingers join the palm, and the wrists. But any joints can be involved. And, although inflammatory markers are usually raised, some people find they don't have raised levels even when it clear from the signs and symptoms that they are having a flare.

So far, you don't have any symptoms and signs that leap out and shout Rheumatoid Disease to justify an urgent referral, and you may have to be a patient patient, keeping a good personal record of all your symptoms, and photographs of any swollen joints.

[IsobelBrown54 in reply to oldtimer]

Thanks for your reply. I didn’t ask how long the waiting list is, as in Ireland, where I live there was a 4 year wait to see an ENT consultant and am now waiting a year for surgery and a two year wait to see an orthopedic consultant, which I’ve skipped by using the Cross Border Directive and am having my second knee replaced in the UK this week.

I could use the cross border directive to see a Rheumatologist in another country if I wished to be seen sooner.

[Hidden]

You will find it is a long path to travel if no markers at first but a diary being persistent and maybe the family link and keep asking for blood tests say every 3months. I had OA diagnosed first for 3-4 years and though pain symmetrical and me saying I think it is RA with nothing showing in my blood it took till this year before it showed and with me in so much pain and craling almost in to GP. Come up with a pain management plan that will help with your GP as most of us had wait times.

[Bodhi21]

Hi IsobelBrown54. The ONLY blood test that will catch the ‘sero-positive’RA patients who may not have the usual inflammatory blood markers such as elevated Sed rate, CRP or Rf factor is Anti-CCP. Read the research and go in armed with this information. Any good doctor from GP, internist, to rheum should feel compelled to order this test for you. It is the most sensitive, diagnostic, and prognostic RA blood test we currently have. Used in the US commonly for your type of presentation especially. Good luck and hope you find an answer you can trust soon.