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un diagnosed

Posted , 6 users are following.

loulou282
loulou282

im on 15mg methatrexate, i experience chronic pain in both wrists and have recently given up work due to it being to much. i generally feel unwell and seem to be flaring up every couple of weeks with extreme pain and fatigue. Rheumatolgogist said, not lupus, not r/a due to r/f being negative?? ultra sound scan was normal so not synovosis. being now referred to full body bone scan. They cant seem to give me a definate diagnosis. Feet and both hands affected and suffer with depression. Cant understand y its taking so long to get diagnosis.. Reactive arthritis was mentioned but im sure its more like r/a. Last yr was on steroids most of the yr which helped but methatrexate not improving. any ideas would be much appriciated. thank you. x

 

0 likes, 8 replies

8 Replies

  • loladmarie
    loladmarie loulou282

    Posted

    You can still have RA with a negative blood test, its called seronegative RA. However, did they look at carpal tunnel? Since it is in your wrist? Something to look into.

    I have seronegative RA, however I have an awesome Rheumatologist who didn't let the test results blind her and listened to her patient. 

    • loulou282
      loulou282 loladmarie

      Posted

      hi loladmarie, thankx for ur reply. I dont have the symptons of carpal tunnel. i have had flare ups in my left hand a couple of yrs ago and it has improved but now its not swollen but weak. my right hand/wrist swelled up last year and now i can hardly use it at all due to pain and weakness. there seems to be no inflammation there atm but still in chronic pain and on max painkillers every day. my feet have started to get really bad agin. havent moved of the sofa for 3 days. I feel quite unwell sometimes and tired. 
    • donna82193
      donna82193 loulou282

      Posted

      Hello

      Its so sad when specialists do not listen. Its not just about test results. I am sero negative. My specialist is great and has given me steroids. Im waiting to see rheumatoid nurse to goonto methotrexate.

      I hope u can change docs or they do something positive for you.

      Good luck x

    • loladmarie
      loladmarie loulou282

      Posted

      That is good that its not carpal tunnel, because that isn't any fun either! (so I hear I've never had it though). Like what Donna said below, steroids should help with some of the pain and inflammation, I am just so careful and weird about taking steroids. My doctor just prescibed me Etodolac, which is an NSAID for arthritis. So far its OK. I wish I could take the good stuff but I work too much!!

      My recommendation, unless you REALLY like your doctor, is to shop around a bit for a rheumatologist. Just becasue your blood tests are negative doesn't mean you don't have it. Also, it took me 7 months to figure out what was going on with myself. Same thing I was tested for Lupus, lymes disease, blood clots, etc you name it. One I was being treated it gets better smile just takes time, patience, and support. Get a new rheumatologist!!

  • barbara58180
    barbara58180 loulou282

    Posted

    I am also sero-negative, as in no Rheumatoid  factor in blood, that doesn't mean you don't have RA, it's uust a little different, no less painful. My wrists were sopainful--and had dequarvains tendonitis and needed splinting for a long time. It was horrible, but can be treated with rest.I was also started on methotrexate about that time and quit a job due to the fatiqwue from MTX--but that will go away. the fatigue from RA is harder to contro.  find another rheumaolotogist , maybe.
  • loulou282
    loulou282

    Posted

    thankx for help everyone. i also have a trigger finger and scaly hands although this may b due to flare ups. i felt like the rhematolist didnt believe my pain but both base of thumbs tender. he said if the bone scan comes back normal he will take me of methotrexate. just been reading about palindromic arthritis. lol. just want answers now. thankx again xx
  • f70804
    f70804 loulou282

    Posted

    Hi there....

    Your symptoms sound really similar to mine... pain in hands and feet and really bad fatigue and generally feeling totally unwell and in a "fog" for months.  I have been unwell for the best part of 6months now but steroids had a positive impact(apart from side effects) and am now on sulfasalazine and waiting for it to start working!!  My blood tests also suggested no RA.  My GP had suggested a diagnosis of Reactive Arthritis and rheumatologist also said it could well be that or due to family medical history it might also be the early stages of Psioriatic arthritis. Both have very similar symptom and apparently there is no "test" to find out which one it is!  She advised I read up using the arthritis research Uk website which has been really useful.  http://www.arthritisresearchuk.org. I also know that the clinical psychology teams some local authorities have a specific support service  for people dealing with and adjusting to a chronic illness like arthritis so it might be worth finding out if your area has something similar, especially if you have already and depression.  Good luck with your search for a diagnosis. Just let me know if you have any questions. 

  • lesley91928
    lesley91928 loulou282

    Posted

    Hi am on 8 methatrexate a week wrist are really sore can hardly lift

    Anything my feet and ankles are bad some days can hardly walk or get

    Out of bed I work as a carer and that's heavy going and on my feet for 12hrs and am knackered for three days after it and am so tired all the time.

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