If not SS what else?

General
1

Hospital appointment today for my blood test results, lip biopsy results and silogram.

The silogram I had last month showed a cyst in my right parotid gland, hence why my face keeps swelling due to saliva being trapped.

So lip biopsy is negative for sjogrens and so we’re bloods. My ESR is extremely high apparently.

The doctor said that he looked back at my MRI from 2014 when I was diagnosed with fibromyalgia and on closer inspection both my parotid glands have many cysts in them, Then he said ’ I really would like to take a closer look at them with a camera inserted into the gland as they are all too deep for us to get to, But the issue is hospital funding- we don’t have this equipment so we are not able to do this for you!
He is going to look over the MRI from 2014 and consult with the MRI team specialist but suggests I come back in six months time to see how I am doing!!
In the meantime I am supposed to go back to my GP and discuss the results to see what else is possibly the cause- which illness if it’s not SS.

I have viral illness like flu 3-4 days every week plus fibromyalgia and gland pain and pain in my bones of my arms!

I am also due a body bone scan as I have osteopenia and it’s been a few years since my last scan.

I’m on 700lml gabapenti

Any advice would be most appreciated

2

Debbie, are you seeing a rheumatologist to aid in the diagnosis of your condition? Since you already have a high ESR rate indicating inflammation, did your doctor(s) also do the Anti SS-A and SS-B, and CRP? On my first rheumy visit, they took 8 vials of blood and checked for all kinds of inflammatory and autoimmune conditions. As to a negative lip biopsy, you can be diagnosed with Sjogren’s even if it’s negative as the diagnosis depends on much more than just a lip biopsy.

Becky

3

You may need to see a rheumatologist at a major university center. One can have negative blood work. And even a negative lip biopsy.

In the meantime, how are they managing your symptoms? You shouldn’t just be reacting. Being proactive is best.