Pending Sjogren's Diagnosis and Doctor Worries

What blood tests have you had? If your fingers turn blue it sounds like Raynaud's which I have been told happens with lupus, scleroderma and by itself. I just had these tests at a rheumatologist and my PCP has ordered them too: ANA (antinuclear antibody) and Scl70 (scleroderma) and anti-centromere (also scleroderma). A test for rheumatoid arthritis might be helpful for you. Then sed rate and CRP for inflammation, several other tests.

It is easy enough to get these blood tests.

As soon as you mention dry eyes and mouth they suggest Sjogren's. These docs can be frustrating. My palms are tight and fingers are curling and docs are all saying something different. Unfortunately it takes time to get the right doc and diagnosis but you will get there. (Do you get sick in the sun?)

Hey there! It's funny that you mention Raynaud's - my first doctor was originally concerned I had a circulation issue, but then when those tests came back normal and my inflammation appeared, everything started to click. Aside from fatigue, Raynaud's was the main thing that sent me to the doctor first. I don't really get sick in the sun; at most, I think it just makes me pretty tired/sleepy.

So far, it looks like my provider ordered a CBC with auto diff, a comprehensive metabolic panel, a urinalysis, and a uric acid test. I believe he mentioned the possibility of getting labs for blood tests specific to RA and lupus, so I'll definitely follow up with him on that! I'm just a bit worried that because my fingers aren't inflamed at the moment (just some pain when opening jars at times and fatigue) that our conversation won't go too far, but it doesn't hurt to try. I'll admit that it worried me a little bit when he hooked on my dry eyes/mouth when those were the symptoms I was least concerned about (and never really discussed with prior providers).

Thank you so much for responding - you've given me some ideas for things to ask my provider about. I wish you the very, very best in your journey towards wellness. < 3

Hi
Blood tests alone are not the accepted criteria anymore for Sjogrens, according to the ACR-EULAR Classification Criteria. A positive lip biopsy, Anti-SSA that is positive, Schirmer's test and salivary flow test are some of the other tests. I had a negative SSA, but a positive lip biopsy and all other positive criteria.
It is discouraging that some people (and doctors, sadly) don't realize that this disease should never be diagnosed based on blood tests alone.
Here is a great resource https://www.sjogrensadvocate.com/
This website is run by a doctor with Sjogrens and you will learn a lot about the myths and misunderstandings of this complex autoimmune disease.
Its important to find a good rhemetologist, and it sometimes takes awhile to find a well-informed doctor.
I wish you the best and know that you are not alone!
The Sjogren's Foundation also has some good articles and information. Their website is: https://sjogrens.org/understanding-sjogrens
: )

Thank you for the information! You actually prompted me to look back and review my labs from earlier this year (from the PCP who referred me to my current rheumatologist), and I realize now that I actually had a positive result for SSA. I'll be sure to ask my provider about this as well when the time comes. And thank you for these links - I'll be sure to give them a look!

Hi there- I can relate to the uncertainty about the diagnoses and also about the provider… I’m guessing many here could. I’m very sorry you’re going through this, but at the same time please know it’s very brave to step up and into a system that’s not always kind, or even set up to support these kinds of conditions, so that you can take care of yourself and hopefully obtain the care you deserve!

I’m not very familiar with the conditions you and others have mentioned here, but I did want to comment on the uncertainty you shared about the provider.

You’re right, and your provider could very well be super-busy, and online reviews don’t always tell the whole story. Or they could have just been very rushed. And maybe they’re an awesome provider and it just wasn’t their best day. It’s hard to judge after just a brief first appointment.

At the same time, I’m a brown woman and I’ve also been dismissed—several times—when I was first starting to see care for what became multiple intertwined conditions. I can’t be sure if it was because of my race, gender, age, any of the above or it the providers were just condescending, but sometimes it was obvious. I just…wanted to acknowledge that sometimes that can happen too.

And even if it’s not something so insidious as that, it can also happen that you just might not click with a provider, and that’s okay too. I think a lot of the time, we want to be “nice,” not judgey, etc., and at least for me I’m way more likely to blame myself for doing something wrong, forgetting, not remembering or understanding something that was or was it said by the doctor first before realizing that sometimes they actually may have been partially at fault.

Either way, for these complex autoimmune conditions, I personally feel it’s vital to feel comfortable with my rheumatologist—that I could tell her anything about my symptoms, the treatments, and if I’m confused or worried and why that is, so that she can help. It could be the best and most experienced provider ever, and of course experience is important, but if that fit isn’t there, it’s just really hard for me to feel connected and safe and trust my provider. I find myself holding back or just being more stressed than I need to be about appointments.

I’m not sure if you have this option, but eventually if you find you don’t feel comfortable keeping open lines of communication with your provider, it might help to get a second opinion or see if another provider could be a better fit if that’s an option?

The first rheumatologist I saw was correct about my diagnosis, though she had the least amount of information available than anyone I saw later. She was nice, but she was very abrupt and short in her communication style. I’m accustomed to medical information but every time she explained something I got confused. We kept unintentionally getting mired in confusion or disagreements. We just weren’t a good fit.

I felt super self-conscious about telling her how I felt but ultimately she was really understanding when I said my PCP and I had decided it might work better to get a second opinion and try meeting with another provider. Long story, but I actually ended up seeing two other rheumatologists because there was a lot of uncertainty about my diagnosis, so I went to another medical center first before returning to the place where I see most of my providers.

But my point is, on the third try it worked out and things are do much better now. Hopefully it doesn’t take you so long, or maybe you won’t need to do that at all!

But I wanted to share it to say you’re not alone and it is confusing. And I truly hope you find answers soon.

I have very high ANA and very high anti-centromere antibody (scleroderma) and these blood tests are not sufficient for diagnosis. I do have a diagnosis of lupus for other reasons. Blood tests can point the way to further exploration and also indicate a need to monitor.

ps Labels can sometimes be useful but mostly I view them as satisfying insurance codes. And if we have a diagnosis on record, we get treated better by docs 🙂 Unfortunately diagnosis is murky. It helps to understand that the criteria for autoimmune disorders are often geared to clinical studies, where they want pure, easily recognized cases, and those criteria often miss people whose diagnoses are murkier.

To Autowren: Let's just assume for a moment that your Dr knows what he's(she) doing and I ask what kind of biopsy was reccommended? When he says that your labs are ok I think that he is saying your highs and lows are not too far out of range. I am not a doctor (just lots of experience) and they don't look alarming to me. However there are "trends". Such as your white count is a little low but your monocytes are a little high, if that continues to go in those directions, a bone marrow biopsy might be in order. These are just my small observations of a small snapshot of your situation, take them as you will. The big take-away here is you don't trust your doctor (with many reasons) so you need a new one. I think we can all agree on that. It is your right and your health. Please know that we are with you in spirit.

Sorry for the late response - I appreciate the information you provided with me! My provider has since sent another email via the LPN stating that he doesn't yet recommend a biopsy (which seems to contradict the first email, but may be due to a misunderstanding), but it looks like I will be getting more labs soon.

And thank you for your reassurance. After reading through the experiences of others, it looks like this journey tends to be a super murky and sometimes confusing one. But I suppose I'm just thankful that we now know that there is something definitely going on - it's just a matter of figuring out what it is.

Hey there! Thank you so much for your response! Ironically, my provider has now clarified via email that he does *not* recommend a biopsy at this time, which has confused me a little bit, but it looks like I have more labs pending. The original message suggested a minor salivary gland biopsy to definitively diagnose Sjogren's.

I'm going to try to hold on to hope in my provider for just a little while longer - I am not a medical professional, and it could be that these things just seem confusing on my end. (Also, finding providers with availability has been a little tricky.) But I truly appreciate your reassurance - I will absolutely be sure to take action if the feeling that my provider doesn't mesh with me grows!