Hello @suzetteirons, I’m very sorry you continue to struggle. Sjogren’s is tough to diagnose as individuals vary as to if they test positive for anyone indicator. And, the symptoms also vary widely. I was diagnosed by a neurologist I was referred to because I have numbness in all extremities, tremors, tingling, and severe pain.

The other problem is finding a rheumatologist that knows about Sjogren’s and will treat you. Thus far I’ve gotten no where with the rheumatology department at Dartmouth Hitchcock, which is the go to regional medical center in my area. Mayo, John Hopkins, and other larger medical centers offer a team approach to diagnose and treat Sjogren’s. It’s too bad more hospitals don’t do this.

Below is a list of tests:
- Blood and urine tests, to look for the presence of antibodies common in Sjögren’s syndrome. The results of an ANA (antinuclear antibody) test will determine if you have an autoimmune disorder.
- Other blood indicators, antibodies p, B vitamin levels
eAG Calc
Folate (Folic Acid), Serum
Homocysteine, Total, P
Hgb A1c
SS-B/La Ab, IgG
SS-A/Ro Ab, IgG
Sm Ab, IgG
RNP Ab, IgG
Jo 1 Ab, IgG
DNA Double-Stranded Ab, IgG
Centromere Ab, IgG
Scl 70 Ab, IgG
Methylmalonic Acid, QN
Vitamin B12 Lvl
- Schirmer’s test, to see if your tear glands are producing enough tears to keep your eyes moist. Ocular surface staining to look closely at the surfaces of your eyes for damage and dryness.
- Salivary gland function scans, which look at the glands on the sides of your neck, below your ears and under your jaw.
- A biopsy of your lip to look for inflammation of the glands that produce saliva and tears. This test can determine the type of inflammation and the severity. A biopsy of the lip is performed because the salivary glands just under the lip’s inner surface are the easiest glands to access.
- Sialometry, which measures the flow of saliva.
- Ultrasonography of the major salivary glands to reveal characteristic structural changes that can aid in diagnosis.

I have three autoimmune diseases, one of which is associated with Sjogren’s. I do have positive ANA and I tested positive for SSA/RO Ab IgA . I have not had the other tests as my focus has been on searching for treatment for neuropathy and severe muscle pain. I am having increasing eye issues, so will try to be referred to an ophthalmologist.

There are several websites with excellent resources, one is Sjogren’s Advocate and another is the Sjogren’s Foundation. I have adopted a strict diet, no sugar, white flour, etc. I also exercise and walk a least two miles a day. My research has indicated that exercise at least helps with fatigue. I am not on any treatment for Sjogren’s.

I don’t think long term prednisone is a good thing, but perhaps ask your provider to refer you for the other tests. It doesn’t to me make since to keep treating if it’s not more firmly identified that you have Sjogren’s. Sjogren’s has symptoms similar to other diseases. So, I’ve also been tested for lupus, RA, and other illnesses to rule these out. The Sjogren’s Foundation has a treatment protocol guide which is a good resource.

Good luck and please let me know how you make out.

Jump to this post