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At the end of my tether!

Posted , 10 users are following.

tracey91100
tracey91100

I have just had a letter from my Rhuematologist with my results, 4 weeks after initial appointment with her. Apparently all blood tests are normal, although she agrees that I have swelling in feet and hands and she states that my RF factor is in the normal range. My ultra sound scan showed no Synovitis. I still have an MRI scan to come on my knees next week, but from what she has said in the letter she can not find and a specific driver to what is causing my pain and can not at this stage determine inflammatory arthritis. She suggests speaking to my GP about referral to a pain clinic. My pain only started about 3 months ago, but I am getting horrendous pain in my wrists, finger joints, knees, ankles and worst in my big toe joints. I have been taking meloxicam & Codine for the pain. I went on holiday last week to Dorset and tried a day without any pain relief, I was in so much pain. Has anyone else had the symptoms of RA but had all normal blood tests? I know my own body and I know there is something wrong, even if Rheumy says she can't make a diagnosis. I have never had these pains before, I was a mountain walker and keen cyclist only up unti a 3/4 months ago, now I'm in agony in my small joints and knees. It's like a tooth ache feeling, with sharp stabbing pains with swelling. I'm feeling in limbo and at the end of my tether suffering pain with no diagnosis of what is causing it.

0 likes, 14 replies

14 Replies

  • sherry29159
    sherry29159 tracey91100

    Posted

    Oh that is so unfair. I find that with most doctors if you don't fit into their 'instruction book for doctors' they just pass the buck. With all the symptoms you are showing it does sound like mine and I have RA. Surely that rheumatologist should have the intelligence to investigate further or at least refer you to another specialist. Pain management is something I hate hearing. It means its not treatable or its all in your mind! I was same at outset of my RA I was in much pain but it took a while for it to show in my bloods so they must know this is possible. Grrr

    • tracey91100
      tracey91100 sherry29159

      Posted

      Hi Sherry, thank you so much for your reply. You have made me feel better knowing you showed the same symptoms and it was not all in your mind. I have read a few posts on here, and there does seem to be some Rhuematologist who diagnose on signs and symptoms and then those Rhuematologist who just rely on lab results alone. My GP saw my photos I'd been taking and the symptoms I showed at his surgery and he was certain I had RA, that's why he referred me in the first place. My Rhuematologist acknowledges I have swelling and pain but as the labs tests are normal so she wont diagnose. Surly a good Rhuematologist would consider the symptoms and swelling presented by the patient and use this in their diagnosis? I'm not sure if I can ask for a second opinion but I'm not satisfied with the diagnosis (or lack of one) I don't want to have RA at all, but I know the signs symptoms and I am getting are pointing heavily in that direction. The meds I'm on at the moment are easing the pain (Meloxicam & Codine) so I must have something causing this in the first place. I'll see what my MRI scan shows on Monday. Ideally, I don't want to suffer for years before diagnosis, as many on here have. I want my normal life back.

  • laura09552
    laura09552 tracey91100

    Posted

    Hi Tracey, I know exactly how you feel, almost identical to what I'm going through, first bloods were negative and done new ones last week (waiting on results) none of us want to be labelled with RA but as you said, I know my own body and all my symptoms seem very classic to me, I'm having to just sit tight and be patient, waiting to have ultrasound and nerve testing. If it was me I'd be thinking about getting a second opinion if u feel they are missing something?

    • tracey91100
      tracey91100 laura09552

      Posted

      Hi Laura, it's reassuring to know it's just not me in limbo land smile thank you for your reply. I hope you get some answers with your next bloods. It's awful not knowing what is happening to our bodies, when we know something is. I'm just waiting to see if my MRI on my knee next week throws any light on the situation. I've also got to have cortisone blood tests and BNP bloods done. My GP was a bit miffed about the upcoming BNP blood tests as he said they usually do that on old people for heart disease, so he's not sure why she's running them in me. Good luck with your tests, I really do hope it gives you some answers.

  • kristin3351
    kristin3351 tracey91100

    Posted

    My rheumatologist said she has to diagnose on visual symptoms many times because labs come back normal as mine did. She is starting me on methotrexate because she said the damage to my joints will be permanent if I don't try to suppress what is happening in my body.  I Also know something is wrong. Follow your instincts and get a second opinion. You don't want to go undiagnosed with something that could potentially cause permanent damage to joints and other organs in your body. Good luck!  

    • tracey91100
      tracey91100 kristin3351

      Posted

      Hi Kristin, thank you for your reply. That's very interesting that your Rheumatologist diagnosis on symptoms. I spoke to my GP tonight on the phone about the letter my Rheumy sent me, he firmly believes that bloods tests are so good and reliable these days that if the lab tests are normal..that definitely shows you haven't got RA. I mentioned a second opinion to him, but he said to wait until all of my tests are back in & the MRI is done next week before we go to the next step. He said if all of those results come back normal, that we will reassess in September. I hope your treatment is working and your symptoms are easing?

    • laura09552
      laura09552 kristin3351

      Posted

      Hi Kristin, couldn't agree more, sounds like a sensible doctor you have, I feel like my clock is ticking with how much damage I will have by the time they work out what I think I already know! Good luck!

  • Guest
    Guest tracey91100

    Posted

    Is the rheumatologist at least seeing you again? It can take a while to get diagnosed, especially in absence of rheumatoid factor or anti-CCP, but that doesn't mean they shouldn't be treating you. 

    Often, your response to the treatment actually helps them make a diagnosis (or rule it out). 

    There is no accurate way of diagnosing rheumatoid arthritis in the early stages. Even people with positive blood tests and visible swelling can be diagnosed with RA and then later be told the diagnosis was wrong.

    It might not be rheumatoid arthritis. There are lots of things that can cause your symptoms. But it's too soon to rule it out as well. Get a second opinion.

    • tracey91100
      tracey91100 Guest

      Posted

      Thanks for your advice Leicesterstar. No, the Rheumy is not seeing me again. She just said she will write with the results of my MRI which I'll have done on Monday. She said she is only seeing patients with abnormal blood results now, as her wait list is now at 14 months. Yes, it could well be something else like you say. You just want to get to the bottom of it when you are hurting smile

  • natasa24657
    natasa24657 tracey91100

    Posted

    Hi Tracey

    I had zero negative on my blood test but when she looked at my hands and what I explained my symptoms I was diagnosed with RA. I would insist on another opinion. What hospital did you go to. Good luck and hope it's not RA. I used to cycle and ride horses. But hopefully when I get the right meds that work I can pick these up again

    • tracey91100
      tracey91100 natasa24657

      Posted

      Hi Natasa, I live in Harrogate but I was referred to Keighley as the wait list for initial referral at Harrogate hospital was too long. I'm not even sure if my blood numbers, she just wrote that they were normal. She did say that RF numbers can fluctuate but that's normal within the general population. I'll push for a second opinion if I'm still in the same situation in a couple of months smile

  • Babyboomer27
    Babyboomer27 tracey91100

    Posted

    I woukd find another rheumatologist.  Half the people with RA havenegative results.
  • tony09890
    tony09890 tracey91100

    Posted

    Like many others I too tested seronegative.   The Rheumatologist diagnosed RA based on my symptoms.   There is no definitive test for RA!   I started with pain in my forearms, the pain then spread to my wrists, thumb and ring finger of left hand, elbows, upper arms, neck, mid back, left big toe and then nodules in the lung.   RA is not necessarilly limited to just joints it can also affect tendons, lung heart, kidneys and so on.   My pain, like yours manifests itself as an ache or a sharp stabbing pain.   More debhiltating is the pain when attempting to use an affected joint or just from simple movements like lifting an arm of the table or putting hands in pockets..
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