What to do next?

grid
grid Member Posts: 40
edited 8. Feb 2018, 04:54 in Say Hello Archive
Hi All

i am new here so this is my first post.


Symptoms - Pain in finger joints in both hands, feels like they have been sprained. Night time seems to get worst and morning they are sometimes stiff (fingers that is before anyone say anything)

GP Diagnosis Sept 17 - Rheumatiod factor showing in blood test. CCP showed negative. X-rays showed no damage. Put me on the waiting list for Rheumatologist

i decided to go private for info as i didnt want to wait a year and i was getting depressed after reading online stories of Rhumatioid Arthritis.

He checked my bloods and said Rheumatiod factor was high but CCP was what he was looking for and was negative. he asked about previous medical issues. i mentioned that i have severe diarrhea a few months before, and he said that its likley to be Reactive Arthritis. He checked me all over and he mentioned the Rheumatiod Arthritis usually comes with Swelling, Redness, and fatigue which is none of the symptoms i had. so i was relieved at this point. However since researching Reactive arthritis it mentioned that its caused sometimes by an infection or Chlymedyia but when i had blood test at the time it showed no infection or Chlymedia and i dont have redness in eyes.

so has the Rheumy got it wrong?

thanks for any replies in advance

Comments

  • moderator
    moderator Moderator Posts: 4,086
    edited 30. Nov -1, 00:00
    Welcome grid to the Arthritis Care forums

    May I suggest 2 options of Helplines:
    Arthritis Care 0808 800 4050 www.arthritiscare.org
    Arthritis Research 0800 5200520 www.arthritisresearch.org

    I'm sure many of our forums users will be along to offer their experienced help and opinions. Enjoy the Forums

    John
  • dreamdaisy
    dreamdaisy Member Posts: 31,558
    edited 30. Nov -1, 00:00
    Hello, I'm replying to this post as it's almost a duplicate of your other one.

    Reactive Arthritis (which I abbreviate to RcTA) is an unusual one and as for how symptoms present they are a law unto themselves. There are around three hundred kinds of inflammatory auto-immune conditions so gaining a definitive diagnosis can take time. I have psoriatic arthritis which is a sero-negative kind and traditionally begins in the toes and fingers: mine began with my left knee and wasn't officially labelled until my skin helpfully obliged with a bout of pustular psoriasis on my palms and soles, prior to that I had only eczema. The meds used to treat the majority of auto-immune arthritis are the same but it's best to have some kind of confirmation before starting them - why take them if you don't need to? One of the better aspects (if it is RctA) is that it will eventually clear away whereas none of the other kinds do: on the other hand it might return when another infection is contracted.

    I am shortly beginning my 22nd year of this nonsense, pain is constant (it's landed me in bed today) and I have osteo arthritis too. Despite the meds the PsA still has a go at me every now and again and my tiredness levels sore, as does joint discomfort. The OA is more controllable to some extent but the cold has done for me today - does it affect you too? We are merely patients, we cannot advise about diagnosis as all our situations are diferent and we are none of us docs but we all get it because we've all got it.

    There are some threads about RcTA on the Living with Arthriits board on here (which is where more people look in) so do a search and hopefully you will find better information than I have given you. I wish you well. DD
    Have you got the despatches? No, I always walk like this. Eddie Braben
  • grid
    grid Member Posts: 40
    edited 30. Nov -1, 00:00
    Hi dream daisy

    Thanks for your reply it’s appreciated.

    So sorry to hear about your condition. Mine is not as bad as yours but have only had it 7 months. When I first had it, it was more painful but seems to have stayed much the same since.
    I don’t think the cold has changed anything if I am honest with you.

    I will look at the other forums now as I didn’t know what the acronym for reactive arthritis was. I don’t have any sign of psoriasis or eczema at moment.

    Is it worth going back to private or wait till nhs appointment? As there doesn’t seem much they can do to speed up diagnosis?

    Thanks Dave
  • dreamdaisy
    dreamdaisy Member Posts: 31,558
    edited 30. Nov -1, 00:00
    Thank you for your kind words, I appreciate them. I have absolutely no idea about whether you should go private, Dave, because I have not been in your situation. I went to see a private rheumatologist many moons ago only to discover that what the NHS was doing was the best on offer so that was a waste of a few hundred quid. One way to perhaps reduce the NHS wait is as follows: if you don't live too far from the hospital you can always tell them that you could take a cancelled appointment at short notice: I am fortunate in that I don't live too far from mine and I have been able to expedite Xrays, scans and other nonsense when others don't attend.

    I have a long history of auto-immune troubles so for me this is more of the same. It's different for you - and the abbreviation I use is my invention so any mention you find will probably be me answering someone else. I am fortunate in that I have never known good health so I have no idea what I'm missing. :lol: I frequently acknowledge that for those who have that experience dealing with this must be far harder - the auto-immune arthritis world is a complicated one with no clear answers even when one is diagnosed. DD
    Have you got the despatches? No, I always walk like this. Eddie Braben
  • barbara12
    barbara12 Member Posts: 21,102
    edited 30. Nov -1, 00:00
    Hello grid and a warm welcome form me..sorry its late but I am way behind with everything these days..I see DD has given you some good advice..the first thing I found out on this forum was how.complex arthritis is and there are so many types..I do hope you get some answers very soon :)
    Love
    Barbara