Sjogren's likely - how to prepare for rheumatologist

@bluesmom. Welcome to Mayo Clinic. I’m glad you found the site. You asked about meeting a new doctor and being taken seriously. So much will depend on how you act. You need to be prepared, know what’s right or being told to you. Read up on Sjogren’s so will understand what is being said.
https://connect.mayoclinic.org/discussion/first-meeting-with-rheumatologist-need-suggestions/
Also, go through this discussion and you will find other suggestions.
What would you like to ask this doctor?

My big question is whether or not I actually have Sjogren’s based on the new test results and ongoing symptoms. My PCP now believes I do but I’m looking for confirmation from the rheumatologist. Also, given that I’ve already made so many lifestyle changes to accommodate my symptoms (diet, exercise, therapy, getting a less stressful part time job etc), will there be anything else I can do to improve the disease progression? Apologies. I realize my concerns are very large and fairly unanswerable. I’ll try to ask a more direct question next time I post!
Thank you.

@bluesmom Please don’t ever think you need to apologize for something you may have said on MCC. We allow and encourage rants all the time!

Hi, I'm Deborah. I have primary sjogrens and degenerative arthritis. I have been on hydroxychloroquine for my sjogrens for about 5 years and I have been on low dose naltrexone for both conditions for about 3 years and both of them help.
I just wanted to mention that I actually got my diagnosis confirmed, although either sjogrens or rheumatoid arthritis or lupus were all suspected for several years- when my retinal specialist had my eyes dilated and was looking at my retina for an entirely different condition(wet macular degeneration) And he said something about my sjogren so I said I don't have sjogrens he said oh yes you do.
And he had a conference with my rheumatologist and then I got my diagnosis.
So! I never did have the lit biopsy but apparently there were changes in my retina and ocular nerve that you only see with sjogrens.
That's an unorthodox way to get a diagnosis -but that's how I got mine.

Good luck! Having a rheumatologist that knows you. Have
"something" but they're not sure what and will proactively start treating you while they figure out what the heck it is is a good sign.

You have to be the "squeeky wheel" and ask them how much they know about Sjogren's Disease. And it has reached disease status, which is new. If they don't know this then they're not keeping up. The other autoimmune diseases have better established tests and they are likely to be familiar with them. Be sure your initial blood work covers all the bases- which may mean you need to do some research. Know if your panels have any "holes". Don't waste time on a doc that does seem to know anything. And good luck, because we need that, too.

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Does your ANA panel results list the specific pattern(s)? Example: If the results just say "Speckled ," that is not enough information.

And, I hate to say this, but Mass General does this: Give you generic, nearly useless information and tell you they don't have enough information to treat you.

Even when a 5 cm ascending aortic aneurysm is involved.

ANA patterns are categorized and labeled with certain letter & number combinations. Each is associated with particular conditions. My "Speckled" ANA is actually a combo of five distinct patterns that all mention systemic sclerosis.

But I had to order that testing myself because 2 rheumatologist at Mass General Brigham weren't going to. They just assumed I was a dim-witted hypochondriac who couldn't read and do basic research.

My advice would be to go to Tufts or Lahey.

Hello @larak ,
Thank you so much for the very helpful response. The last time my doctor ordered an ANA panel was nearly 4 years ago. I never understood the results: Positive ANA, IFA; ANA Titer 1:80; and AC-2 Dense fine speckled. My doc didn't say anything about it and, frankly, I get really tired of pushing for answers.
Good to know about Mass General. I haven't scheduled with them yet though my doc has sent in the referral. I'll write to my doc and tell them I'd rather go with Tufts or Lahey.
bluesmom

Thanks, @deborahyost3. I too saw an eye doctor many years ago due to all the red spots in my eyes. That eye doc had also mentioned Sjogren's to me but, unfortunately, there was no one to follow up with. I'm hoping to find a rheumatologist who doesn't just dismiss my symptoms. I've tried really hard several times over the past 25 years to get some answers but doctor's dismissive attitudes don't do much for my mental health.
I'm hoping these latest positive test results help to get me taken seriously.
Thanks again,
bluesmom

I have found both Tufts and Lahey to be more thorough and responsive.

A 1:80 titer is a low positive result. The AC-2 pattern is more often associated with anti-DFS70 antibodies.

DFS70 can be associated with Behçet's disease, psoriasis, atopic dermatitis, etc.

I can see why a rheumatologist would dismiss this four years ago at 1:80. But it is worth rechecking. Things change.

I’m hoping that the positive SP1 and PSP antibodies will give them more to consider. Maybe not?