Undiagnosed - sjrogrens, lupus?

Posted by JJ GALLEGOS @jjgallegos, Jun 28, 2012

HELLO,
I AM A 57 YEAR OLD FEMALE THAT HAS DRY EYES, BODY ACHES, DEPRESSION, INSOMNIA, FATIQUE, SHORTNESS OF BREATH, DRY MOUTH.I HAVE BEEN TO THE DOCTOR AND HAD NUMEROUS TESTS RUN, BUT MY DOCTOR CAN NEVER FIND ANYTHING WRONG. I KNOW SOMETHING IS WRONG BUT I DONT KNOW WHAT TO DO.
CAN ANYONE HELP ME?
JJ GALLEGOS

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@tedib

Hi JJ, I’m also a 57 yr old female with all the same symptoms you write about. I recently visited a rheumatologist and was diagnosed with fibromyalgia. I have had these symptoms for many years and seen many doctors including other rheumies. While everyone I saw said my illness was autoimmune in nature (I also have some form of urticaria), not one would put a name to my group of ailments. My bloodwork always comes back pretty normal but with hypothryroidism and low vitamin D levels. Even though it is a relief to finally have a name for it, it’s not much easier to deal with it. I’m already doing and taking everything I can for fibro. Try to see a specialist, either a rheumy or neurologist that specializes in fibromyalgia. It’s a very complex condition. Best, Tedib

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

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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

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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……

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@cherylmcg

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……

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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/

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