Migratory gout…

I really feel for you all reading your stories. I am still in the area of the unknown regarding an RA diagnosis but can’t imagine what else it can be.

(I have PTSD and have had chronic insomnia since 38 yrs of age and very low Vit D.)

About 6 years ago, when I was 48, I started a low carb diet. Within 8 days I had a throbbing toe. Doctor diagnosed gout. I had never had a joint pain in my life before this. Yet, I also noticed I had a stiff hip which was odd. I soon experienced non-symmetrical, migratory joint pains all over my body changing every couple of days. One morning my jaw felt like I had been punched. Another day it could be a painful elbow. My joints seem constantly inflamed but not visibly red. E.g. Knocking on a door is painful on my knuckles as is kneeling for my knees.

Rheumatology found nothing in fairly extensive blood tests and vaguely spoke of arthritis on the basis that my morning joint stiffness subsided fairly quickly and there was no redness. (If this is arthritis then the ‘wear and tear’ cliche is nonsense in my opinion.) Over the years, the pains have become more symmetrical in ankles, knees, hips, lower back, elbows and shoulders. I get bursitis in my knees very easily if I walk far. My neck glands have been inflamed for nearly 2 years now and I am not entitled to medical cover at the moment as I am living abroad indefinitely.

I hope it is not RA but I can’t imagine what else it can be. I wonder if in the 33% of cases that blood tests are negative whether they always become positive after a period of time? Any idea of timescale if this is the case? All the best to you.

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Comments

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  • mbrobert1973
    7 months ago

    Did your blood tests include an anti-CCP? I am Rheumatoid Factor negative and remain so, but had CCP “off the charts.” Just curious

  • MrLogic-Not author
    6 months ago

    Thanks mbrobert. Italian blood test says Ab Anti Citrulina 1.1 EliA U/ml. Which is negative if below 7. I think that must be their equivalent of anti-CCP.

  • Kelly Dabel moderator
    8 months ago

    Hi MrLogic-Not, Thank you for reaching out and sharing your story. Sorry that you are dealing with this pain and joint stiffness and still waiting on a diagnosis. In addition to speaking with your doctor, this article gives a good outline of how RA is diagnosed, that may be helpful to you: https://rheumatoidarthritis.net/diagnosis/. Lab values can be different from person to person. Your doctor will take many factors into consideration when making a diagnosis and labs are just one piece. Someone with a negative Rheumatoid Factor lab result can still be diagnosed with RA. Typically the labs will elevate with progression of disease, but again, everyone is different and that may not be the case for each individual. Hope that helps. Please keep us posted on how you are doing, if you’d like. Wishing you some answers and relief soon. Best, Kelly, Rheumatoidarthritis.net Team member

  • MrLogic-Not author
    8 months ago

    Thanks Kelly, Richard, c7mv96 and Monica, I will keep you posted. Having negative blood results put me in a state of hoping for the best and denial over my pains but your experiences have helped me snap out of it.

  • Mary Sophia Hawks moderator
    8 months ago

    There is now a blood test called a VECTRA-D, that actually can show RA in cases where other blood tests have been negative. It looks at 14 different components in the blood. The standard tests have always been negative for me. My family internist never believed I had a problem. When I got to the rheumatologist, diagnosis was made and my symptoms improved.
    MSH

  • mbrobert1973
    7 months ago

    Yes, this is a good suggestion.

  • Richard Faust moderator
    8 months ago

    Hi c7mv96. Glad the Vectra test finally gave you some answers. For anyone interested in more information, one of our contributors wrote about the test and her experience with it (very similar to yours) here: https://rheumatoidarthritis.net/living/testing-testing-1-2-3/. Best, Richard (RheumatoidArthritis.net Team)

  • Monica Y. Sengupta moderator
    8 months ago

    Thanks for sharing, c7mv96! I am glad that the Vectra-D brought you closer to a diagnosis. Glad you are also feeling better! All the best, Monica

  • MrLogic-Not author
    8 months ago

    Thanks again Monica. Great to hear you have no signs of erosion. The article makes sense, you have to weigh up the pros and cons and commit to a plan of action. I think I will ask for an x-ray on my right knee – which is my most painful joint – and synovial fluid analysis. The specialist was not in a hurry to do this because I don’t get the heat from my sore joints nor redness that he would have expected if it is RA. Perhaps that comes in the later stages?

  • Monica Y. Sengupta moderator
    8 months ago

    That’s a great start! — I really recommend consulting another rheumatologist (if possible)a afterwards (with those test results) since they tend to have the most experience with autoimmune conditions.

    I really wish I could give you more information on the symptoms. It depends on the person. I sometimes experience heated joints but not during every flare. I also don’t turn red normally. For me, it depends on a lot of different factors like those in my environment.

    I don’t know if you’ve seen this page on our site yet: https://rheumatoidarthritis.net/symptoms/ but it goes into a little more detail of what is possible in each joint!

    Sorry for the late response!! ~Monica

  • Monica Y. Sengupta moderator
    8 months ago

    Thank you for sharing your story, Mr. Logic-Not! I am so sorry you have not received a diagnosis. A lot of our community understands that frustration! I don’t know how public healthcare works where you are but if it covers visiting doctors you are definitely entitled to as many opinions as you feel necessary.

    I personally am sero-negative (negative bloodwork) and have been so since diagnosis 8 years ago. I believe (and I hope Richard or Kelly correct me if I am wrong) but Kelly, another contributor here has been sero-negative since she was young. Unfortunately, this disease affects everyone differently so it’s very important you consult doctors.

    Please reach out if you have anymore questions or just need to talk! Thinking of you, Monica (RheumatoidArthritis.net Team)

  • MrLogic-Not author
    8 months ago

    Thanks Monica, having paid to see 2 specialists, one in London, one in Italy, I feel that until my joints are visibly inflammed and red I will not be taken too seriously and they will consider it to be osteo-arthritis. Even though I have not heard of osteo-arthritis being migratory nor giving one swollen neck glands. I did not realise one can be sero-negative for 8 years. Is sero-negative normally a less serious form? Do you mind me asking if you take anything other than anti-inflammatories such as Naproxen? I wanted to know if I should be on something like Salazopyrin. A doctor has suggested I could try it and if I feel relief that would imply I have RA. I worry that the side-effects will worsen my chronic insomnia etc.
    All the best
    Adrian

  • Richard Faust moderator
    8 months ago

    Hi Adrian. I just wanted to quick follow-up on Monica’s note where she mentioned that one of the other contributors, Kelly, had been seronegative for years. Yes, she is correct (I’m Kelly’s husband). Kelly was diagnosed at two years old. I believe the RA factor test didn’t even exist yet. She was diagnosed based on the totality of her symptoms. She has very aggressive RA (and treatments were not as advanced then) and has used a wheelchair since her late teens. Out of curiosity, when doing other tests last fall, her doctor did an RA factor test and it was negative – almost 40 years after her diagnosis. The blood test truly doesn’t tell the whole story.

    Also, I noticed that you mentioned that you were diagnosed with gout. Gout is an autoimmune condition and such conditions are often comorbid. Make sure you mention this diagnosis to any doctor you speak to about RA. Best, Richard (RheumatoidArthritis.net Team)

  • Monica Y. Sengupta moderator
    8 months ago

    Unfortunately, not being taken seriously is also a frustration many people in our community experience and not just from doctors!

    I would say that no it’s not a less serious form — I still have all the clinical symptoms, including swelling, pain, and stiffness. This being said, I have been lucky so far to not show any erosion. However, this might be due to my aggressive medicine regime. I was lucky my rheumatologist diagnosed and treated me quickly.

    Yes, I don’t mind you asking, I am on steroids, DMARDS, pain medications, and biologics. I have been lucky that I don’t have any pre-existing conditions and as of now, I am tolerating them all well.

    I can’t say (for your protection) what medications you should be on because there are a variety of factors specific to your medical history that only a doctor can safely decide upon. Different medications work differently for everyone and not everyone has to be on the same types.

    The side effects are definitely annoying and may worsen other conditions so it’s definitely important you talk about any concerns with your physician. (I certainly do, probably obnoxiously so!)

    I thought this article might be interesting to you: https://rheumatoidarthritis.net/living/my-decision-to-be-on-meds/

    Thanks for reaching out, Adrian ~Monica

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