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New here and have working diagnosis of Lupus
I have been told I have “presumed Lupus”, but no official diagnosis yet. I had a fracture earlier this year which didn’t heal well on my finger, now diagnosed with CRPS, and osteoporosis. I have had a lot of problems over the years with Achilles tendonosis, painful joints, fatigue, I have microscopic colitis, SIBO, and really bad shoulder and neck pain. Quite a soup of issues!! No real diagnoses just being shuttled from specialist to specialist. Thoughts?
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I am sorry to learn of your possible admission to the autoimmune group. So many unpleasant and bewildering symptoms.
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3 ReactionsDo you have lab results consistent with antinuclear antibodies. Have you had any skin problems ?
Is there a family history of autoimmune problems
or psoriasis.?
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3 ReactionsWelcome, @izzybizzy. You may be interested in this related discussion:
- Lupus or not Lupus?: https://connect.mayoclinic.org/discussion/lupus-not-lupus-lupus-not-lupus/
I hope you saw the helpful posts from @seniormed and @jerce.
Izzy, have you seen a rheumatologist? What are next steps to confirm or rule out the diagnosis?
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4 ReactionsHi yes I have seen a rheumatologist, and have another appointment in January.
Blood tests were done some were positive:
Such as a positive ANA (Antinuclear Antibody) test with a titer of 1:160 and two different patterns, homogeneous and speckled, plus others.
I have noticed a rash on my chin after sun exposure that sticks around but also mostly just on one side of my nose, not both sides. Frequent mouth sores also
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2 Reactions@seniormed hi I have had a couple of blood tests positive including ANA positive result with two different patterns and titers, along with a high Anti-dsDNA (Double Stranded DNA) level. the first ANA test shows a titer of 1:160 with a homogeneous pattern, and the second ANA test shows a titer of 1:160 with a speckled pattern. the Anti-dsDNA was high, at 13. Also I have frequent mouth sores, skin rash on my face now but not on both cheeks, also on chin.
My mother had Celiac Disease and lichen planus and my father had asthma.
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2 Reactions@jerce yes it’s quite a journey!! Already 4 years. But I’ve heard it can take years to diagnose!
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1 Reaction@colleenyoung thank you so much! I’ll definitely check this out.
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1 Reaction@izzybizzy
It is a journey. I also don’t have an official diagnosis but my mom had lupus and RA/fibromyalgia and Hashimoto’s thyroiditis, etc. I have Hashimoto’s and many spine/joint/tendon issues.
How is your CRPS, SIBI, pain, osteoporosis and colitis being treated now? Have you had allergy/immunology testing? Have you had your thyroid checked plus iron levels?
For your neck/shoulder pain, you may want to see an orthopedic doctor to have X-rays and MRI of your cervical spine to see if you have any spinal cord/nerve root compression and degeneration causing your neck/shoulder pain?