Undiagnosed - sjrogrens, lupus?

Have you seen a Rheumatologist?

This sounds like sjorgens, sjorgens takes a special blood test. It will not show up in a regular blood work tests. I was diagnosed about 15 years ago. Sjorgens is in the lupus family. I am now 62 years old and in the past few years i have started having severe faigue, and in the past couple of years i am now having skin problems with it...break outs and itching and burning, i have an appt with my rh dr in a few weeks. You need to get an rh dr. There is also meds for the dry mouth and you need eye drops evey day for the eyes...my dr recommends restasis but my ins will not pay for it so i use eye drops called oasis which i get from the eye dr. The extreme dryness in the eyes can cause damage to your eyes.

What do you take for fibro? What test did they do for fibromyalgia?

GM, I am seronegative for Sjogrens disease. Because of this fact, local specialists said nothing physically is wrong with you. My PCP and I both knew something was wrong (extreme pain, couldn't get out of bed, dizzy, high heart rate, dropping items, sweating, red face, hands, feet..and the list goes on:) So he referred me to Mayo through the physician referral program. So I went and they looked beyond the blood panel and did a tilt test, lip bio, leg punch bio. So grateful for my docs at Mayo. So diagnosed with Sjogrens, sjogrens arthritis (not fibro), small fiber neuropathy, and sjogrens related POTS. All that to say, maybe consider a visit to a Sjogrens center, or major medical center. Best Wishes

I too understand not getting a diagnosis! My rheumatologist did an ultrasound of my neck as a noninvasive procedure to determine Sjogren’s. I did not want to have a bioassay. I should find out in a few days if I have this disease or not. My C3 and C4 serum levels are decreased which is associated with Lupus but my blood test is negative……

@cherylmcg There is nothing worse than waiting forever for a diagnosis. It can take years to get a diagnosis of an autoimmune disease. I know that sounds pretty demoralizing but…… so many new diseases have been discovered in that last 10 years or so. Mine wasn’t given a name until 2010 so many doctors outside the research circles still haven’t heard of it. Made for a trying time. This link mat be of some help to you. It’s from The National Institutes of Health:
https://rarediseases.info.nih.gov/contact
I agree with @lilymol who suggests that you try a major medical center or university teaching hospital. Do you have ones within a few hours of you?
I’ll leave you with this article on not giving up:
- The art and science of never giving up https://newsnetwork.mayoclinic.org/discussion/hold-for-6-25-needs-review-fyi-and-assign-author-science-saturday-the-art-and-science-of-never-giving-up/