Pending Sjogren's Diagnosis and Doctor Worries

Posted by autowren @autowren, Jul 17, 2023

Hi all! I've been hunting for a community to talk about my autoimmune journey with, and I am so thankful this place exists.

I'm a young black woman in her mid-twenties. After a few years of wondering, I finally got to see a rheumatologist for my symptoms. About 2 years ago, I began to experience itchy, painful, red swelling around the joints of my fingers for weeks on end. In addition, my fingertips would turn blue with stress, and I experienced constant fatigue. Even with SSRIs (to treat my depression), I struggled to feel rested and sometimes had to call out from work. My hands are also frequently red even without inflammation, and family members have remarked for years that my face will turn red (without blushing or heat). The student health center of my college suggested that I may have an autoimmune disease and started a referral, but my insurance dropped and I was unable to follow-up.

A few years have passed, and my fatigue has stayed put to the point of worrying my spouse. I also experienced another flare-up in my fingers, which prompted some blood tests and a referral to a local rheumatologist.

My rheumatologist did not seem particularly interested in the inflammation in my hands/face redness, but he seemed interested in my mild dry eyes and mouth. He suggested that I had Sjogren's syndrome, but didn't really clarify what would happen next. I talked about this was family members (who also have autoimmune diseases), but they were concerned that the doctor was shrugging away my inflammation.

I was feeling super great about everything until I finally looked up the reviews for the providers I went to. The area I am in is extremely, extremely infamous for bad healthcare, and as someone who has been working in healthcare-related jobs in the area for the last two years, I have had patients literally beg me not to send referrals to some of the doctors here (including the one my rheumatologist is at).

Reviews don't always represent reality, but I began to get nervous when my provider told me (via email) that I would need to get a biopsy "as discussed during [my] visit". The thing was, a biopsy was never talked about at all, and when I saw him in person it was implied that I would not need to see him soon unless I had another flare-up. I also got back some lab results that were in red, but he told me that he didn't see "any other problems at this time". I saw several reviews online from people who expressed that this specific provider was not super responsive to their concerns, and in retrospect I felt that way during my visit. Fortunately, he did clarify that my working diagnosis is Sjogrens (with positive ANA) at this time.

Am I just blowing things out of proportion? Should I just sit tight? I just wanted to see if I'm just worrying over nothing and if I'm allowing the infamy of the healthcare system in this area get to me. I was also wondering if my labs are truly non-problematic (and included a screenshot). After years of brain fog, horrible fatigue, and random inflammation, I just want to finally get clarity and treatment.

My provider could easily just be super busy, and I could be misunderstanding him.

I'm sorry if this is all over the place (and super long!). Please let me know if I broke any rules or need to edit this post.

Interested in more discussions like this? Go to the Autoimmune Diseases Support Group.

autowren | @autowren | Jul 18, 2023

In reply to @emo "Hi there- I can relate to the uncertainty about the diagnoses and also about the provider…..." + (show)

@emo

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.

Jump to this post

Hey there! I just wanted to thank you for sharing your experience and being vulnerable. Admittedly, I may have some residual grievances toward medicine that I never really noticed until recently. As a kid, a doctor confused my parent's terminal illness for muscle spasms, and my spouse's chronic illness (which was only finally diagnosed this year) has had a slow response from our PCP despite the fact that we have reiterated that the pain is so severe that he has contemplated horrible things to end it. [Fortunately, my spouse is in a much, much better mental place now.] Especially after working behind the scenes and seeing how broken healthcare tends to be (especially to underserved groups), I guess it has fractured my own trust in many ways.

And thank you for the reminder that it's okay to seek a second opinion and even a new provider. I'm going to hold on to the hope that I am just misunderstanding my provider for a little while longer, but I will also be researching options in our area in the near future.

Your message has made me feel empowered and so much less alone - I wish you the very best in your own journey < 3

suetex | @suetex | Jul 18, 2023

Sound like you have a plan, and that is good. You can make that "unavilability" pay off for you by making an appointment now even though it will be a long way off. Having that appointment in the hopper will make your decision when the time comes even easier. Just cancel it (making someone very happy) when you make your decision. That is what I had to do. My guy wouldn't talk to me and explain things and spent as little time as necessary. The 2nd time he raised his voice to me (and what he asserted was irrational) I had enough, I was glad I had made that appointment and that it was coming up. I was up front with the new doc. She's the one that found the SS because she looked for it. I had antibodies against my salivary glands. Fitted the whole picture. Glad I switched.

michey | @michey | Jul 18, 2023

Autowren, I am reading posts to learn more about autoimmune problems for my husband who remains undiagnosed despite seeing a number of specialists and read your post. At the same time, I was listening to NPR and heard this discussion that you may possibly find helpful:
https://wamu.org/story/23/07/17/in-good-health-the-complexities-of-autoimmune-disease/
(Just click on LISTEN to hear the 34 minute podcast that may be well worth your time.)
The following 3 speakers talk about the difficulty in getting diagnosed and treated. They address BLACK WOMEN specifically.
Dr. Mehret Burri Talabi from The University of Pittsburgh School of Medicine
Joy Buie, Director of Research at the Lupus Foundation of America Joy Buie
Dr. Lilyana Amezcua, the Multiple Sclerosis Comprehensive Care and Research Group's interim chief
Thank you for sharing your plight. I'll look for your updates in the future.

covidstinks2023 | @covidstinks2023 | Jul 18, 2023

Autowren, Bless you sweet lady! Praying for you and all that have replied. Autoimmune diseases are hard to diagnose it seems. I am in the same boat with you to a degree. I was diagnosed with Fibomyalgia 28 years ago, Raynauds a little later (which I ignored due to it being so mild) then hashimotos (hypothyroidism), then ostearthritis almost all over and last year Graves Disease (Hyperthyroidism) and in May of this year borderline Lupus. Plaquenil worked great for a while and helped with the inflammation/pain and I felt so much better, but, the side effects were terrible. The problem is getting back into see the Rheumatologist who gave the "borderline" Lupus over the phone from bloodwork. I see them in a couple of weeks. In the meantime, I am on nothing. The Raynauds has ramped up and my inflammation and pain is back up too. My faith in the Lord is what keeps me going and sane and my church, family & prayer warriors. There is a shortage of good rheumatolgists in my area. You have to look at the numbers and listen to the symptoms and the patient. My C-Reactive Protein, ANA, DSANA and a couple of other levels are elevated. I cannot tolerate the sun. I stay exhausted. I get the redness in my face easily, heat intolerant, fatigue, joint pain, eye inflammation and easy bruising on my arms that looks like I am on blood thinner, but, I am not. I also have asthma, migraines, IBS & long Covid. I will stop with that. My heart hurts for all of you because this is hard. My thoughts and utmost prayers are with you all. We will get through this...yes we will! Hugs & Prayers....

Becky, Volunteer Mentor | @becsbuddy | Jul 18, 2023

@autowren Hi and welcome to Mayo Connect Connect. As you can tell, many folks here are very willing to help you! Sounds like you are having the same problem that many women have: some doctors just don’t take women very seriously. It makes a real problem for those of us with autoimmune diseases. But what you CAN do is to find a university hospital or comprehensive medical center in your area.
You can also contact this site, Genetic and Rare Diseases, and they can help you find good and knowledgeable doctors in your area
https://rarediseases.info.nih.gov/contact/
Please let me know if you have any success, will you?

emo | @emo | Jul 19, 2023

In reply to @suetex "Sound like you have a plan, and that is good. You can make that "unavilability" pay..." + (show)

I did the same thing. I waited on my next appointment with my original rheumatologist (3-4 months, which felt so long). I scheduled another appointment with a different rheumatologist just in case things didn’t work out.

And I was really, really glad I held that appointment!

Becky, Volunteer Mentor | @becsbuddy | Jul 21, 2023

In reply to @michey "Autowren, I am reading posts to learn more about autoimmune problems for my husband who remains..." + (show)

@michey. Thank you for the NPR discussion. It will be a great addition to these many discussions on trying to get diagnosed.
What doctors has your husband seen? Has he gone to a university medical center? Before I was diagnosed, I was just told that I must be dehydrated and not to worry. When I finally got the MRI I had been asking for, none of the doctors recognized the problem. The hospital sent the films to the university hospital and they knew exactly what was wrong. I got some emergency treatment and then my husband took me to the university. Thank heavens for the university and doctor!!
Have you considered a university hospital or comprehensive medical center?

mebbe | @mebbe | Jul 21, 2023

I have LS. It was an uphill battle to acquire a diagnosis. Even now the GP’s at my surgery are woefully ignorant of the condition. I’ve learnt so much online via YouTube.
I live in the UK and our healthcare system has failed us miserably.
Warmest wishes Mary

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