I recently saw a question posted in an online support group that went something like this:
"What kind of doctor diagnosis Sjogren's Syndrome?"
The simple answer is a Rhuemetologist.
However, life is never that simple, and after reflecting a bit I realized I need to elaborate on this topic.
Here's why... just because you see a rhuemetologist doesn't mean you will get a proper diagnosis.
Yes, that can be very frustrating.
Part of the reason why is because Sjogren's is not widely known in the medical community, even among rheumatologists.
If you are on the search for a Sjogren's diagnosis, then look no further.
This list of 7 suggestions will help you on your way to a diagnosis.
They will help you get prepared and hopefully find the specialist that can give you the proper diagnosis.
Here's our recommendations:
1. Get a referral to a rheumatologist
The first step to getting a proper diagnosis is seeing the correct doctor.
There are many physicians that routinely monitor you when you have Sjogren's, but your primary doctor for the disease is a rheumatologist.
Your Primary Care Physician (PCP) can make this referral for you.
I would even go so far to suggest you find a rhuemetologist who is knowledgeable and treats other Sjogren's patients.
How do you find one?
Well there are a few ways.
You can find a clinic that specializes in Sjogren's Disease, such as Jerome L. Greene Sjögren’s Syndrome Center.
If this option is unavailable to you you could ask at a local support group.
Lastly if you are a member of the Sjogren's Society of Canada or Sjogren's Foundation, they can help you find a rhuemetologist in your area.
2. Ask your Primary Care Physician (PCP) for the proper bloodwork
Getting into see a Rhuemetologist can take a while.
In Alberta, where I live the average intake time is 6-12 months.
While you wait for your appointment with your rhuemetologist there are several things you can do, and the first is to get the proper blood work.
This is important because the rhuemetologist will need this information to make a proper diagnosis, and by requesting this blood work before you see them, you'll already be one step ahead.
When you see your doctor you will want to request an "Early Sjogren's Blood Panel".
These blood tests will include the SS-A, SS-B, ANA. Rheumatoid factor (RF), SED rate, among others.
If you want to learn more about these blood test and what they mean, I recommend you pick up the book The Lupus Encyclopedia, which is a great resource for anyone dealing with Sjogren's or Lupus.
3. See an Ophthalmologist
You may need a referral from your PCP, but if you do indeed have Sjogren's you will need to be monitored by an ophthalmologist.
An Ophthalmologist will be able to do a full examination of your eyes and provide feedback on treatment.
Common tests include:
Schimer eye test (to test the dryness factor of your eyes)
Fluorescein Eye Stain Test AKA "the yellow dye test" (to test for abrasions on the surface of the eye due to dryness)
They may conduct additional tests such as an evaporation test and an inflammation test.
These tests along with the full examination will help your ophthalmologist and rheumatologist assess the severity of the dryness of your eyes.
This is important as dry eyes is a symptom your rhuemetologist will look at when making a diagnosis.
4. See your dentist
Did I mention it takes a long time to get into see a rhuemetologist?
If you are still waiting, I recommend getting into see your dentist.
Your dentist will do an examination of your mouth and teeth. It's important to report any symptoms you are experiencing so that your dentist can record it.
Things your dentist will be looking for include:
Dry mouth
Excessive cavities (teeth decay)
Sensitive teeth
Mouth sores
Trouble talking due to dryness of mouth
Trouble swallowing
If you are anything like me, you likely have a long a torturous road of dental issues. Working alongside your dentist to try and keep your oral hygiene in check.
Excessive cavities and teeth decay are very common among Sjogren's patients. Ask your dentist about products and routines that can help prevent the further deterioration of your teeth.
5. Prep for your appointment with your history
One of the best things you can do prior to your first appointment with your rhuemetologist is to write down your history.
If you are anything like me, with brain fog, it will be handy to have it all written down.
Here's a list of the items you should have ready to give to your rhuemetologist:
A list of all medications, vitamins and supplements
A list of family history with autoimmune diseases
A list of your symptoms, along with frequency, severity and length of time.
Communicate any information recently found by your ophthalmologist and dentist
We have a free worksheet you can use to help prepare for your rheumatologist appointment. You can get a copy sent straight to your email.
Sign up below.
All of these items will help paint a picture for your rhuemetologist. Have them handy and ready to go before your first appointment.
6. Read and print
I recommend that you visit sjogrens.org to learn a bit more about Sjogren's Disease.
Print out any information you find helpful and relatable to your condition and bring it along to your appointment to talk to your doctor.
7. Ask lots of questions
Once you get into your rhuemetologist be sure to ask lots of questions.
It it handy to write all your questions down before your appointment.
You can keep organized with this free worksheet.
In your first appointment your rheumatologist may or may not give you a diagnosis. Be prepared for this.
Your doctor may need to gather more information, conduct more tests or monitor progression over a space of time before making a diagnosis.
If you do get a diagnosis, I recommend you ask what factors helped to make a positive diagnosis. Keep this information documented in your health records.
If you do not get a diagnosis, I recommend asking why not. If the doctor feels they do not have enough information, then you should request to be sent for a "Sjogren's Lip Biopsy".
Conclusion
Diagnosing Sjogren's is difficult and many factors including bloodwork, symptoms and a positive lip biopsy test are all typically needed in order to get a positive diagnosis.
Getting a diagnosis for Sjogren's may require the use of a multidisciplinary team. Do you best to keep organized and keep records of your appointments.
We hope this this list can help you in your search for diagnosis.
Wishing you Health and Happiness,
Heather 💜