I have had bloodwork done about 6 times in the past year and every single time my ANA is positive and so is my SS-B. I have heard many doctors say "probable Sjogren's" but I do not have a firm diagnosis yet. I know that everyone presents differently in terms of their symptoms and severity of symptoms, but one issue that seems to be puzzling to my doctors is that my eyes are not dry. I do have a dry mouth, but at least until this point, the dryness is not bad enough to effect my dental health. I do have extreme fatigue. I have joint pain, especially in my hands and feet. I have swollen lymph nodes in my neck. From time to time I get brain fog, and a tightness in my chest because of inflammation around my lungs.
My rheumatologist mentioned "neuro-Sjogren's". Has anyone else had this mentioned to them, or know exactly what it means? My doctor didn't really elaborate she just mentioned the possibility of sending me to see a specialist who is both a rheumatologist and a neurologist. I recently had an MRI of my brain done because I have terrible migraine headaches and because of the possible Sjogren's diagnosis, the MRI showed an enlarged pineal gland that could be caused by a lesion, but other than that the scan was completely normal.
Has anyone out there been diagnosed with Sjogren's without the signature extreme dryness of the mouth and eyes?
Or, for those of you who went through years of wrong diagnosis, do you know of anything else that might cause a positive ANA and SS-B that is not Sjogrens (Lupus and RA have already been ruled out)?
Hi,
I am sorry it is so confusing. Did you read the articles on the front of this website on diagnosis and presentation? I thought they were pretty helpful...... I thought SSB was pretty specific for Sjogren's. I just posted about my confusion as well. I do not have a positive ANA but I do have mild dryness and other things....
The whole thing is very hard I know.... I have read on here that a lot of rhuematologists think that Sjogren's is basically only SICCA symptoms.
Leah
Hi Reabee, :)
I understand your confusion. As said, we all seem to be different as to what symptoms we have and which ones begin first. In my opinion, I believe many doctors may get stuck on this "Sjogren's is dry eyes and mouth" thing that they overlook the fact that not everyone has those symptoms. Do you feel this is the reason why you're not diagnosed?
A few people have been diagnosed only by blood work, sometimes accidentally found when being treated for something else. They really have NO symptoms, or extremely mild ones. By the way, I'm glad to hear your dental health is not comprimised.
I don't know what they might mean by "nuero-Sjogren's". I'll leave that and your question about ANA and SSB to someone with more medical expertise.
Please remember we are here with you on your journey.
Melinda
I have a firm diagnosis of sjogrens and do not have the usual dryness. I do notice dry, grainy eyes and a dry mouth sometimes late at night, but nothing I cant handle pretty easily (at least at this point). I was diagnosed based on positive bloodwork and my joint pain, which can be pretty intense at times. In fact, I initially went to the rheumatologist thinking I had RA due to my family history and the sudden onset of joint pain, but bloodwork came back Sjogren's (and the rheummy says I'm slightly positive for one of the lupus markers...so I think she may be considering lupus as well...especially since she talks about lupus every time I go see her).