What now?

[CureSjogrensNow]

Two years ago: No sign in blood. Other tests normal except for eyes. But biopsy positive. Two years later of unimaginable illness. New biopsy for research study - negative. All else negative, again, except for eyes. Feel better. Off all meds. Six months later - losing weight for no reason, sleep issues, pain issues.Tingling in my lips!!!

I am looking for very specific responses. This happened to you? You read about same? I am set for a new biopsy as part of the research study at the close of the year. I am so panicked that you have no idea. I barely made it through the last round of this nonsense and can't imagine it again. Treating with one of the prominent Sjogrens doctors mentioned on this board. Thank you in advance for you help.

[trc1962]

Your situation sounds very frustrating for sure. I think there are lots of us who are still struggling to get a diagnosis. I have a positive eye test and small fiber neuropathy which is kind of indicative of sjogren's, but could be something else. I would take great comfort in the fact you have a knowledgeable rheumy working with you, mine admitted yesterday that we "may need help from other rheumatologists" which I so agree with. Waiting for clearing by my insurance to head to Seattle to try and get some help. Wishing you well and hoping you have strength for the journey.

[Carolina]

Dear Cure,

On again, off again, various symptoms, no symptoms, remission, return with a vengeance.....yes, I've been posting for years on this board, since 2010.  It all sounds familiar.

Why do you want to be part of a research study?   My advice: treat the symptoms.

I'm reposting this for you from Jasper's post:

Excellent article about Seronegative Sjogren's Disease in Minnesota Physician, June 2016:

Click on the link below and go to pages 14 and 15 to read the article.

https://issuu.com/mppub/docs/mn_physician_june_2016

Be sure to read pp 14 and 15, enlarge the view.

You will find yourself, for sure.

TREAT THE SYMPTOMS and feel as good as you possibly can.

Hugs,  Elaine