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Diagnosis

RA revelation

  • By shayda

    Hi everyone,
    New here. Pretty sure I have RA (as does my GP but I live in Canada so it’s a 6 month wait to see a rheumatologist)….
    Thought I’d share my story: I am 35 years old now and 15 years ago I was diagnosed with unexplained (cause unknown) bilateral sensory neural hearing loss. It is progressive – I am 75% deaf and I wear hearing aids all the time. Since my early 20s,I have had debilitating fatigue (I just thought I was “lazy”). Also the last 15 years, I have had flares in both wrists, both knees, tops of my feet and ankles. Also back pain, shoulder pain, elbow pain. I always brushed it off that I “did something” or “trained too hard” (I am very active). My knees and wrists have gotten worse in recent years. My husband and I have had to cut holidays short if I am in a flare up. They usually last 3-5 days and then the joints feel ok.

    I saw a rheumatologist 7 years ago who basically said “meh”. He’d need to see me in a flare. And my bloodwork comes back negative for RF. He was terrible. Thought it could be gout or pseudo-gout. He also said RA usually presents in the hands first? So I and my GP just assumed it wasn’t RA. I have since seen an endocrinologist, neurologist and physiatrist (who absolutely thinks its RA).

    Well, this summer I had THE WORST flare ever in my knee. Pain was excrutiating. Since then I have had 4 flares (either right or left knee) to the point where I have had to take 5 days off work (I’m a high school guidance counsellor). And I am SO SO SO tired. 2 weeks ago, I finally started doing research and I think its RA! It must be! The last flare I had 30 ml of synovial fluid drained from my knee and it was tested and no uric acid or CPPD (so not gout) and the white blood cell count was high. Again, RF factor was normal though. As were the C Reactive Protein. Which doesn’t make sense. Also my right wrists bone is now sticking out ALOT.

    I am SO anxious to see the rheum. And also apparently hearing loss could be tied to RA? While getting a diagnosis for some could be sad news, for me it would be amazing!!! Finally! To know I’m not going crazy!!!! Or that I’m “lazy”!

    I would love to hear any and all thoughts!

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  • By shayda

    Oh also, in consultation with my GP, I am currently in medical leave from work until the flares settle down and my energy levels increase. He is trying me on methotrexate.

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  • By shayda

    Thank you! Me too!
    And no…referral was made 3 weeks ago and I am waiting to hear back. I live in Canada so the expected wait that I was told was 6 months

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  • By Erin Rush Moderator

    Hi shayda!

    I am sorry you have had such a hard time getting a diagnosis! Whether or not you have RA, your symptoms definitely merit attention and treatment!

    First, there is a form of RA called seronegative RA, which is when the blood tests do not reveal elevated RA factor. You can read more about it here — https://rheumatoidarthritis.net/living/seronegative-ra-blood-tests-dont-tell-entire-story/.

    If you do have RA, early treatment can be a very important part of managing joint damage. I realize you have tried very hard to get diagnosed and I wish you had a better experience with that first rheumatologist.

    Please don’t be afraid to be the “squeaky wheel”. No one knows you body like you do and if you know something is wrong, then you are right. Don’t hesitate to keep advocating for yourself and your health. I hope your next appointment is much more productive. I am sorry you have to wait so long for that appointment, though! While waiting to be seen, you may want to check out various treatment options here — https://rheumatoidarthritis.net/treatment/. If you go through the list, you can see some over-the-counter options and natural treatments you may consider. While they will not help with joint damage, some of these treatments may offer you some pain relief or lessen your inflammation. If you click on any of the topics in dark blue on the right hand side of the page, you will be taken to a page with more detailed information on that particular topic (NSAIDS, for example). Also, here are some tips from our community members about managing pain and discomfort during a flare — https://rheumatoidarthritis.net/living/10-ways-to-get-comfortable-during-a-flare-tips-from-the-ra-community/.

    I wish you the best of luck getting a definitive diagnosis and treatment plan!

    Best, Erin, RheumatoidArthritis.net Team member.

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