When a Doctor Misdiagnoses Your RA
Can an 18-year-old have rheumatoid arthritis? The Arthritis Foundation says yes. But that’s not what Sandy Janowski Barnhart was told when, as a college student, she sought help from the students’ health center for bouts of incapacitating shoulder pain. Here Sandy, now 40 and a public-health specialist, talks to HealthCentral about her circuitous route to an RA diagnosis — including the harsh lesson of an introductory Zumba class.
HealthCentral: It’s ironic that someone who works in healthcare would have such trouble getting an accurate diagnosis. Can you tell us about your professional background?
Sandy Janowski Barnhart: I’m a research manager at the University of North Carolina. I’ve been here for 17 years. This year I was able to expand my field a little bit; I’ve been working in ophthalmology and I’m now working in research administration for infectious diseases. I have a master’s in public health, so my personal interest in health has a public-health focus, which is why I love websites like yours.
HealthCentral: I understand your RA journey began with a misdiagnosis.
Sandy: When I was younger, 18 or so, I would get bursitis all the time. It would happen in my shoulders and I wouldn’t be able to extend my arms out. If I had a flare I could not move. If it was my dominant hand, forget it. I couldn’t write, I couldn’t do anything.
I was an undergrad and I would go to students’ health and they were like, “You know, just take some Vicodin and sleep it off. You’ll be okay.” I always used to say, “I swear, I must have arthritis or something.” And they were like, “No, you’re too young for that.”
I played softball when I was 12 and that’s where everybody said I got the arm issue from, like a tennis-elbow kind of thing. I was never a hardcore athlete, so that just didn’t make any sense to me.
HealthCentral: How long did it take for you to get a diagnosis?
Sandy: Years went by. I was always obese, so I had health issues that I assumed were related to my weight. Then I got married in 2005 and three years later, when I was 31, we decided that we wanted to try to start a family.
While I was doing the two-week waits (to find out if I had conceived), I felt absolutely horrible. I couldn’t walk up stairs. I had no energy. I would ride a bus to get to work and I would have to pull myself up the railing to get onto the bus. And I was hungry all the time.
So I went to my doctor with a list of 25 different symptoms. I was like, “If I’m not pregnant, there is something seriously wrong with me.” She looked at me and said right away, “You have hyperthyroid.” And then I made an appointment with a radiologist to find out if it was Hashimoto’s or Graves’. I found out it was Graves’.
HealthCentral: So the Graves’ diagnosis came first, before the RA diagnosis?
Sandy: Yes. First I tried medication for the Graves’, but it wasn’t doing any good without starting to impact my liver. I decided no, I’m not taking any more medication, we’ll just go with the radiation-iodine therapy. At that point, the doctors waited. They waited too long to get me started on my thyroid replacement hormone. So I gained a lot of weight, probably about 30 pounds in six months. As I said, I was always pretty big anyway, so this was bad.
I was like, “I’m not going to keep letting the weight pile on.” So I took an introductory Zumba class and I kept up with the instructor. I don’t do anything halfway. And after I took that class, I was in so much pain. Oh, my God. I could not move. I went to the doctor and that’s when she looked at me and she said, “Let’s test your rheumatoid level. If we missed this for all these years, I’m going to kick myself.” She took my blood work and my rheumatoid factor was sky high. I was 33 at the time.
Today I continue to be treated for both Graves’ and RA. For the RA I take methotrexate and Enbrel. I still have pain but it’s more of a dull ache. Sometimes I’m fine and some days I’ll be like, “Oh, my gosh, my knee is bugging me,” or something like that. But it’s not where I can’t do anything.
HealthCentral: Do you feel like the medical community could be doing more to help people with RA?
Sandy: Oh, yeah. I think that they don’t put enough emphasis on anti-inflammatory diet. The same doctor recommended that I try the Paleo diet, and oh, my gosh, it made a world of difference. I no longer eat anything made with flour. So, when I go out to eat, I can’t have a sandwich. I can’t go to a fast-food place and grab a burger. I eat lot of salads. I eat a lot of vegetables. I eat plenty of meat. I don’t feel deprived, I really don’t. I’ve learned to substitute. Like I have a great lasagna recipe that I make with zucchini noodles instead of lasagna noodles, and people love it.
When I first switched over to Paleo and was able to walk a lot more and all that, I lost 65 pounds. I’ve gained about 20 of them back, but my labs are still great. I’m not at risk for diabetes or anything like that and my blood pressure is good and my cholesterol is good. So like my doctor says, the weight gain is not affecting what matters.
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