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Sjogren's likely - how to prepare for rheumatologist

Posted by bluesmom @bluesmom, 2 days ago

Hello,
I'm a 57-year-old woman who's new to this group and just recently tested positive (78) for Salivary Protein 1 (SP1) Igg antibodies and (27) Parotid Specific Protein (PSP) Igg antibodies. I believe I've had Sjogren's for many years now but this is the first time a doctor ordered this test. I had previously tested negative on the two most common Sjogren's blood tests.
Some background is that I was diagnosed with Hashimoto's 10 years ago but have been dealing with dryness for at least 20 years. I've had bartholin cysts, dry eyes, dry mouth including mouth sores and teeth/gum issues. I've also dealt with lots of joint pain, muscle cramps, fatigue, fogginess and vertigo. I have low blood sugar issues as well and have been eating a gluten free, dairy free, low sugar diet for 25 years.
My doctor has just sent a referral to Mass General Hospital's rheumatology department and I'm worried that they'll once again dismiss my symptoms. I take very good care of myself with daily exercise and an excellent diet and doctors often say "you look great!" even though I don't feel great, particularly during flare ups. Does anyone have any experience and/or advice on how to approach this doctor's visit so that my concerns will be taken seriously?
Thanks so much for reading,
bluesmom

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Mentor
Becky, Volunteer Mentor | @becsbuddy | 2 days ago

@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?

REPLY
1 reply
bluesmom | @bluesmom | 1 day ago
In reply to @becsbuddy "@bluesmom. Welcome to Mayo Clinic. I’m glad you found the site. You asked about meeting a..." + (show)
@becsbuddy

@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?

Jump to this post

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.

REPLY
2 replies
Mentor
Becky, Volunteer Mentor | @becsbuddy | 1 day ago
In reply to @bluesmom "My big question is whether or not I actually have Sjogren’s based on the new test..." + (show)
@bluesmom

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.

Jump to this post

@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!

REPLY
deborahyost3 | @deborahyost3 | 15 hours ago
In reply to @bluesmom "My big question is whether or not I actually have Sjogren’s based on the new test..." + (show)
@bluesmom

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.

Jump to this post

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.

REPLY
suetex | @suetex | 11 hours ago

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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