Part of the mystery solved

6 posts in this topic

Ok, so at least I've got ONE sure diagnosis. The ENT yesterday said that the pathologist who reviewed my lip biopsy said that it's 100% consistent with Sjogren's. And she's supposedly the expert on Sjogren's around here.


So that certainly explains my stiff finger joints, my dry mouth, my sore eyes from time to time, and my desert skin.


So now the question remains: Is this primary Sjogren's, or secondary to CREST? I had been diagnosed in June with CREST, but that was only because my ANA had a nucleolar pattern (no other antibodies were positive) and I had finger ulcers and heartburn and some difficulty swallowing. But I've had no finger ulcers so far this year, and it's certainly been cold enough, so I'm wondering if they were due to stress (had a lot last year), and apparently Sjogren's can lead to Raynaud's and difficulty swallowing and heartburn as well.


Hmmmmm.....well, I had another blood test done on Monday so we'll see how that one pans out, and whether it has any further indications of something like CREST.

Share this post

Link to post
Share on other sites

Hello Amberjolie


I want to say fantastic but it's a little weird saying that when someone has been told they have a disease! Mind you I think most of us here know how awful being in diagnostic limbo is so I say...fantastic!


Hopefully you'll have primary Sjogrens and no other illness, do keep us posted.


Take care.

Amanda Thorpe

ISN Sclero Forums Senior Support Specialist

ISN Video Presentations Manager

ISN Blogger

(Retired) ISN Sclero Forums Assistant Manager

(Retired) ISN Email Support Specialist

International Scleroderma Network (ISN)

Share this post

Link to post
Share on other sites

Hi Amberjolie


Well, one more piece of the puzzle for you...never nice to get anything but good that you'll know what/how to deal with it. ;)


My rheumatologist told me that it really doesn't matter if your following blood work shows more antibodies or know how they show, then they don't (meaning once it's there, it's there, no matter what). So, my take on that is that it pretty much points them in the direction of where to start looking if you ever get sick.


Hope you let us know how Monday's shows itself.

Sending good wishes your way!

Share this post

Link to post
Share on other sites

Did you laugh with relief when you got the definite diagnosis? I did! I celebrate the anniversary every year - it's the date I was able to say to myself "Well, girl, you aren't a raving hypochondriac after all!"


Jeannie McClelland

(Retired) ISN Director of Support Services

(Retired) ISN Sclero Forums Manager

(Retired) ISN Blog Manager

(Retired) ISN Assistant News Guide

(Retired) ISN Artist

International Scleroderma Network

Share this post

Link to post
Share on other sites

Yeah, I understand what you all mean. I was going into the appointment thinking - would I prefer he tell me that I had Sjogren's, or that I didn't have it? Because if I didn't, I'd be wondering what's causing all my symptoms (in particular my fatigue & my sore joints). But then I could maybe chalk everything up to stress, or being out of shape, or something else that would be less serious.


But I've always been of the opinion that I want to know. Because if you don't find out, you'll still have whatever it is you're suffering from, but you won't get the help you need. But if you do find out, they can start to work with you, either on the symptoms or the cure, if there is one.


My hope with the bloodwork is that if it is CREST, it'll show an anti centromere pattern this time, which would make the diagnosis clearer. But I know if it doesn't show that, it doesn't mean it's not CREST. So frustrating!

Share this post

Link to post
Share on other sites

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!

Register a new account

Sign in

Already have an account? Sign in here.

Sign In Now