Updated: Mar 6, 2021
Are you struggling to get a Sjögren’s diagnosis?
Have you been to the Rheumetologist and got inconclusive results?
Are you frustrated trying to get to answers?
Do you want relief from the pain?
If any of these questions sound familiar, then you are in the right place!
If you are currently struggling with symptoms similar to Sjogren's, and you are having difficulty getting a diagnosis, this post will help you.
I have gathered a list to help you get further along the road to a diagnosis and treatment.
Why trust me?
I’ve been around the block. The chronic illness, rheumatic disease, block that is...
Not only has my own personal experience with a Sjögren’s diagnosis help me write this post, but the community at large has helped too.
About a year ago, and 7 years into my journey with Sjogren’s, I became a Support Group Leader for the Sjogren’s Society of Canada.
It’s a rewarding experience where I get to give back to our community.
And I love hearing everyone’s stories and experiences along the way. Everyone’s experience is so unique.
Sometimes a doctor might suggest that a patient might have Sjögren’s, but no official diagnosis is made.
Often those individuals reach out to me to get more info.
I recently had this happen with an individual who was feeling sore, tired, frustrated and fairly upset.
He had seen his primary care physician to get the Sjogren’s Panel bloodwork, and gone off to get the lip biopsy, and was referred to a rhuemetologist.
Leading up to his appointment with the Rhuemetologist he was feeling hopeful a Sjögren’s diagnosis.
However, that feeling quickly came to a halt as the Rhuemetologist decided he did not have Sjogren’s.
The doctor stated his bloodwork did not indicate Sjogren’s, or any other rheumatic illness, and the lip biopsy was inconclusive.
This individual phoned me after the appointment feeling confused on what to do next.
While I had a few suggestions in mind, I reached out to my online support group to get more input.
I’ve always felt “two heads are better than one” and in this case I have access to many heads, so I dived right in.
I laid out the situation and many people online offered their opinions on what to do next.
Here are the suggestions if you are struggling to get a Sjögren’s diagnosis.
Get a Second Opinion
Many people recommended getting a second opinion (or third, or fourth).
Most said if you weren’t happy with the Rheumetologist try and find a new one.
Every health care system is different, and getting a second opinion may be difficult. I would start by asking your General Practitioner (GP) for assistance.
At the very least you should find a Rhuemetologist who can and will troubleshoot with you.
Get More Tests to Support a Diagnosis
There is no gold standard test for a Sjögren’s Diagnosis.
To get a diagnosis a Rheumetologist will take many factors into consideration including bloodwork, physical symptoms and a lip biopsy.
But those aren’t the only things that can aid in a diagnosis.
You can ask your dentist to perform a saliva flow test.
You can ask your optometrist or ophthalmologist for a tear flow test, or other inflammatory tests.
Ensure Your Doctor Completes Bloodwork Over Time
Bloodwork can often come back negative.
It’s important to have your doctors monitor your bloodwork over time, which can fluctuate and change from negative to positive depending on many factors.
Know That Sjögren’s Can Mimic Other Illnesses
Other illnesses that mimic Sjogren's or are in the same family are:
Multiple sclerosis (MS)
ME/CFS (chronic fatigue syndrome),
Polymyalgia rheumatica (PMR),
One individual in our support group stated that hypothyroidism, anemia, and CFS together could bring about symptoms in line with Sjögren’s, and that an endocrinologist should see you and weigh in.
If you have exhausted all options and still haven’t gotten a diagnosis. Don’t give up!
Approximately 30% of Sjögren’s patients are seronegative, which means they do have Sjögren’s, but do not have the bloodwork to confirm a diagnosis.
If you are without a diagnosis and are struggling with pain. There are a couple avenues you can pursue.
Many Drynesss Symptoms Can Be Managed With Over-the-counter remedies
Stock up on preservative free eye drops, sugar free mints/gum, lotions, nasal gel, etc.
Now is the time to implement a stellar self care routine to battle the dryness symptoms.
Ask Your Doctor For Pain Relief Options
Each doctor will need to do a complete assessment before providing pain relief medications. If over the counter options aren’t working. Ask you doctor for help.
I know many patients have asked for a medication called Low Dose Naltrexone (LDN) And it has helped to alleviate pain.
Find a Functional Medicine Doctor
A Functional Medicine Doctor (FMD) is a doctor who bridges the gap between the western medical world (often medication) and a eastern medicine world (often holistic treatments).
I have heard many patients rave about treatment options provided by a FMD as they offer treatments that compliment each other and cover many bases.
The biggest takeaway here is to not give up!
Sjogren’s Diagnosis can take time. Keep working with your medical team.
Don’t forget to document your symptoms as they come and go.
If you have gone through the process of getting a Sjogren‘s diagnosis, do you have any suggestions to add to the list?
Did you have difficulty getting a diagnosis?
I hope that this post has helped you find some new ways of continuing to search for a diagnosis.
Wishing you all health and happiness,