Carrie Ann Inaba, 51(!), is a judge on Dancing With The Stars in case you needed background on her. She comes across as a kind, non fame-whorey and non-controversial person meaning we don’t talk about her much. My mom watches DWTS and likes Carrie. She says she’s always nice, but gives constructive criticism. Carrie was on Live with Kelly and Ryan this week when she told the story of how she figured out she had lupus. She was told six years ago that she had a non-specific autoimmune condition. Then, when she was slated to get a colonoscopy, she saw on her chart that her diagnosis was lupus. Her doctor never freaking told her this! In the six years in between when he knew and when she knew she also did a bunch of stuff which can make lupus flare ups worsen.
How she figured out she had lupus
I was diagnosed with autoimmune six years ago but my doctor never told me I had lupus. I was having a colonoscopy and I saw my chart, ‘lupus.’ I was like ‘oh this is not my chart.’ They’re like ‘you have lupus.’They didn’t tell you you had it?
My doctor had forgotten to tell me. He told me about the other conditions. I’m a really good patient I take notes. My mom was with me. Once I found out I was able to make really big changes in my life. I quit Diet Coke. I stopped going in the sun because when you have lupus you’re allergic to UV light. Which I didn’t know. I was causing all my own flare ups.
[From Live with Kelly and Ryan via YouTube]
After that Ryan said “well you look great” which – f-k him. Can’t stand that guy. That makes me sad that she has to clarify that she takes notes at appointments and that her mom was with her. She’s trying to anticipate the comments that she must have forgotten her own medical diagnosis. You don’t forget something like that! Also doctors shouldn’t forget to tell a patient their diagnosis, that’s the basis of their job! I hope she never saw that asshole again and that she at least threatened a malpractice case. I know those are rarely successful, but the doctor should be put on notice. At the very least that doctor is grossly incompetent and at worst he withheld a diagnosis from a patient.
Also, is it true that you have to give up diet soda if you have an autoimmune condition? (Googles this. Ok results are inconclusive that there are any health issues associated with fake sugar consumption. *drinks Coke Zero as usual*)
I’m glad Carrie is doing ok now and is managing her condition. Also I’m glad she told this story. I hope the right people realize what her doctor did and that word gets around about him.
Here’s that clip from Carrie’s interview:
Photos credit: WENN
I have several autoimmune conditions and have not had to give up Diet Coke. Mind you, I have cut back because I read that the artificial ingredient sucralose was found to cause cancer in lab rats.
The UV comment she made is weird as well, because most people I have meet with autoimmune like me usually have Vitamin D deficiencies, and one of the best ways to top up your Vitamin D is to get out in the sun.
Photosensitivity is incredibly common in lupus. I actually break out in hives from the sun at times (high UV index days) and I don’t actually have lupus.
Me too, which is interesting because you have fibro aswell if I remember correctly?
I have the opposite. I break out in hives from the cold (food, drinks, weather). I also have a fibro diagnosis.
Avoiding the sun is essential in lupus. It’s practically the most important thing you can do. I have never heard it recommended to get Vitamin D as more important than avoiding the sun which triggers the disease in the first place.
And it’s not just rashes and photosensitivity (which is a problem too). Sunlight actually causes the disease to be active in lupus, which means it can send you into a flare which can trigger all of the significant health problems involved in lupus including organ (kidney, heart, brain etc) damage, not to mention making you feel like you were hit with a truck.
The UV comment wasn’t weird at all. As someone with Lupus, I can tell you most docs will prescribe Vitamin D pills as needed (currently taking 50,000 units weekly) and recommend you avoid the sun as much as possible.
As Lupus.org notes, “40 percent to 70 percent of people with lupus will find that their disease is made worse by exposure to UV rays from sunlight or artificial light.”
https://www.lupus.org/resources/uv-exposure-what-you-need-to-know
My SiL died from Lupus. It is incredibly dangerous to not tell someone their diagnosis. Also – you look great !!!!!
I drink diet sodas still BUT I can’t deal with sucralose (Splenda is the big recognizable brand). It makes me super sick. Never have had a reaction from Aspartame.
The thing that makes it extra complicated is the comorbidity of autoimmune disorders and overlapping symptoms. I’ve never been diagnosed with IBS, but there are symptom overlaps with my chronic condition. Sweeteners are usually a trigger for IBS patients, and those who’s conditions share similar symptoms. But because my condition has allodynia and just an overall heightened response to pain, my reaction is more severe feeling.
And my god, sucralose is in SO many things. I was dealing with a flare up over a week because the melatonin dissolvable tablet that I’d taken had sucralose in it, and I didn’t check. It’s in fruit cups. It’s in a lot of juices, yogurts, some whole wheat english muffins… it’s just EVERYWHERE and I’ve got so much sympathy for the people that have life threatening allergies. I don’t. But I make myself pretty sick and useless if I have sucralose, so the amount of label reading I do is crazy, and I still miss it sometimes. But for someone who has a life threatening allergy, I can’t imagine how difficult it is to just shop for groceries.
Interesting you talk about overlapping symptoms. I had a diagnosis of IBS (since childhood, always had GI problems). Went gluten-free, and now I no longer have IBS symptoms; being GF made a huge difference, probably 1 less thing to cause inflammation. A few years ago I was diagnosed with lupus. First dx was the general “undifferentiated connective tissue disease” because so many autoimmune diseases have similar symptoms and abnormal labs. Finally though I got the butterfly rash a number of times, plus the photosensitivity, and that kinda solidified the dx, but it took a couple of years (research shows most patients go many years before a specific dx). As far as lifestyle, some changes will help some people, while others it won’t affect (like with the diet coke). AI diseases are still not well understood, so it takes a lot of individual tinkering. I used to take oral birth control, but read research that it can potentially affect lupus flare up frequency bc oral BC pills have systemic effects. To be on the safe side, I stopped the pill and changed to an IUD which has a local effect instead. Do I have less flares? Yes (well, I did before I started nursing school, stress increases flares, and today I’m exhausted & achy laying in bed). Was it bc I changed BC methods? Probably not wholly, as I was doing many things to help myself, but it’s good to know I removed 1 more potential additive from the possible problem without effecting my quality of life by much. So, like I said, there’s a lot of guessing what will work and not for an individual, most of it will be a cumulative effect in the end. It’s just difficult to determine what is the right combo to change symptoms, her combo involved removing diet coke/artificial sweetner.
I have lupus and drink Diet Coke on the regular and never been told to stop. And after starting a new drug treatment, I’ve felt the best I’ve felt since my diagnosis.
But yes, definitely avoid the sun at all costs.
And fuck Ryan and his comment about her looking good. As if it isn’t hard enough for people without visible disabilities to be taken seriously as it is. It’s not about looking good, Ryan, it’s about feeling as if you are able to even get your body out of bed at times.
Hmmm… Lupus, and all autoimmune can be very difficult to diagnose. A lot of them behave the same way and the markers in your blood can be positive for several different autoimmune. While one doctor looks at your symptoms and bloodwork and thinks Lupus, another doctor may not agree. It’s possible her doctor didn’t want to make a firm diagnosis, and another doctor did. Because unless you’re severely sick with active obvious symptoms, there isn’t much to offer in wY of treatment. Steroids aren’t recommended for minor flares. But yeah, someone should have told her to stay out of the sun. But if she really has lupus, you’d think she would realize that on her own. Sun exposure can throw you into a wicked flare.
I’m very confused by this comment. You start it by saying that lupus can be one of the most difficult diseases for doctors to diagnose but then you end it by blaming the patient for not being able to diagnose it on her own. So it’s difficult to diagnose, but she should be able to self diagnose herself easily? And even after she was tested for the disease and told she didn’t have it?
Yeah, that’s not what I meant. My bad. I didn’t mean she would know for certain she had lupus, that’s really hard to know.
Jesus, that’s malpractice.
To put it lightly. If any of my doctors ever did this I would be FUMING and suing their ass into next year. How can you not tell a patient a diagnosis, when not telling them could result in adverse affects through actions they would take because they were none the wiser? What the effff.
I’m so glad Carrie Ann found out her diagnosis but seriously 6 years!! Did her doctor have amnesia?
As for the Diet coke lovers, I used to love soda as a kid but as an adult the stuff repulses me. I’ll only drink Sprite and that’s rare (like on a flight it’s a nice treat). I recently had a Snapple for the first time in years and omg it was not good. As a kid Diet Coke always tasted awful to me and I really don’t get people who chug it like there’s no tomorrow. It’s definitely not good to drink every day.
Poor lady! My heart goes out to her. I have lupus. Yes, you have to avoid sunlight, UV lights, certain type of lights in your home- fluorescent & halogen are big ones.
I live in WalMart land. That store and their lighting is so hard on me. It takes a week for me to recover. I am so grateful for online ordering. I can avoid WalMart now. When I was younger I felt like a ninety year old woman in a twenty-something dancer’s body. Lupus can wreck you and you can be super healthy at the same time. It is a nightmare, lol.
I think her Diet Coke comment could be from research. If you go to the Lupus foundation the FAQ states there is no correlation between aspartame and lupus. Some Doctor’s do think there is a correlation but it has not been proven. I think she is doing her own research, understandably.
She did say she was having a colonoscopy. Lupus & IBS go hand in hand for many of us. If you have Lupus you can Cystitis too. Also IBS and Cystitis are common together. Her doctor might have told her to lay off the diet coke since that is an IBS trigger.
I can tell you that going to the dr’s office is sometimes like packing it in. The drs schedule so many appts that it’s like a supermarket. They don’t really stick around to talk to you or know the patient. Yeah you’re just a number or a paycheck.
Chances are he was in a rush and forgot that detail.
They have to take patients every 20 min. so it’s not entirely their fault.
As George Carlin said, “Somewhere out there is the world’s worst doctor. The scariest part is that someone has an appointment with him tomorrow.”
Thanks for covering this! I have Lupus & take medication daily which controls some of the symptoms but is not without risks (e.g. macular degeneration). Reading about other people’s experiences is quite helpful.
I work in the medical malpractice field and I can tell you that a doctor not telling a patient their diagnosis is much more common then you would think. I have had cases where the patient had pneumonia and dr prescribed cough syrup for months and told the patient it was a smoker’s cough. Another case a podiatrist was performing penile enlargement surgeries.