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Diagnosis

New member who’s frustrated

  • By ZekesMom

    Hi I’m Jo and I just found this site. I’m going to sound pretty frustrated in this first post, but won’t be as whiny later: oh I hope not! So two weeks ago I got lab test results. Not from my doctor but the lab itself. I saw some weird things, and am still waiting for andoctor to call me, although today I was referred to a rheumatologist. The office won’t call me back to schedule an appt and I can’t reach them. Anyway, one test is for the RF factor. At my lab, it says a strong positive is >59. My result was >250. What? Is it possible it can be that high? Then the CCP antibody test, the high range is at 39. Mine was 63. So I understand both these reflect on a strong chance I have RA. A doctor I don’t see told me that. But my primary and pulmonologist haven’t called. I’ve been having pretty bad pain in both times. They feel sworn in the knuckles (don’t look like it though) and the knuckles on hands and a couple fingers get red.

    Ok. I know there’s a large chance I have it, but when am I going to get the help of a doctor? I am so tired. All. The. Time. And all this is making it so much worse. Not one thing makes cry now: Everything does! Ok, I’ll stop whining. I don’t know what I’m asking, just for a little info and support I guess. Thanks for listening!

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  • By ashleyf Moderator

    Hi there @zekesmom. We’re glad that you reached out to our community. Please never hesitate to do so, we strive to be a safe place for all types of feelings and experiences that come along with this journey- your frustration and venting are never a burden. I know you posted this later last night, so wanted to check in to see if you heard from the doctors today at some point? If not, I really hope you’re able to get a hold of them soon. While blood results are a small fraction of a potential RA diagnosis, they aren’t everything- I thought you might be interested in some info that discusses blood tests and what the numbers may mean: https://rheumatoidarthritis.net/diagnosis/laboratory-testing/ Also, an article that discusses what you can expect at your first Rheumatologist appointment: https://rheumatoidarthritis.net/living/what-to-expect-at-your-first-rheumatologist-appointment/ Lastly, we know how exhausting and frustrating it can be to be stuck in this grey area- experiencing all of this pain and not yet having the answers that can help you work towards relief. You’re not alone, and our community is here for you. Sending so much love your way. -Ashley (Team Member)

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  • By ashleyf Moderator

    Hi there @zekesmom. We’re glad that you reached out to our community. Please never hesitate to do so, we strive to be a safe place for all types of feelings and experiences that come along with this journey- your frustration and venting are never a burden. I know you posted this later last night, so wanted to check in to see if you heard from the doctors today at some point? If not, I really hope you’re able to get a hold of them soon. While blood results are a small fraction of a potential RA diagnosis, they aren’t everything- I thought you might be interested in some info that discusses blood tests and what the numbers may mean: https://rheumatoidarthritis.net/diagnosis/laboratory-testing/ Also, an article that discusses what you can expect at your first Rheumatologist appointment: https://rheumatoidarthritis.net/living/what-to-expect-at-your-first-rheumatologist-appointment/ Lastly, we know how exhausting and frustrating it can be to be stuck in this grey area- experiencing all of this pain and not yet having the answers that can help you work towards relief. You’re not alone, and our community is here for you. Sending so much love your way. -Ashley (Team Member)

    reply
    • By ZekesMom

      Thank you so much for responding. I still have not heard back from the rheumatologist and will be caalling my PCP’s office first thing in the morning. If they are unable to do anything I will call my inssurance company as there is not another doctor closer than about 30 miles away. And I’ll be calling them anyway: I spoke to the practice manager this morning for the psychologist I am trying to see, and she told me at that moment someone was calling the underwriter for mental health to see if they would pay if I came to see that doctor. I never got a call back from them either. So I’m done being the one that is fighting for these two things, and it’s fine for people to get on it that can get things done. I’m better than I was last night, a little. My hands are not screaming at me tonight, and mentally I’m a bit better knowing I can get substantial help tomorrow with these things. Thank you so much for telling me what I posted is okay, and knowing that someone else understands.

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    • By christine.laaksonen Moderator

      Hi @zekesmom, I just wanted to follow up to see how you are doing and find out if you’d been able to connect with your doctor and insurance company. Please know that we’re here for you. I do hope that you’ve been able to get some answers. Sending you a gentle hug. — Warmly, Christine (Team Member)

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