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Undiagnosed - sjrogrens, lupus?
Autoimmune Diseases | Last Active: Jul 7, 2022 | Replies (16)Comment receiving replies
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……
Replies to "I too understand not getting a diagnosis! My rheumatologist did an ultrasound of my neck as..."
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@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/