New here and have working diagnosis of Lupus

I am sorry to learn of your possible admission to the autoimmune group. So many unpleasant and bewildering symptoms.

Do you have lab results consistent with antinuclear antibodies. Have you had any skin problems ?
Is there a family history of autoimmune problems
or psoriasis.?

Welcome, @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?

Hi 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

@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.

@jerce yes it’s quite a journey!! Already 4 years. But I’ve heard it can take years to diagnose!

@colleenyoung thank you so much! I’ll definitely check this out.

@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?

@izzybizzy I was very interested to read that you had been diagnosed with CRPS following your finger injury. I had some major surgery on my hand years ago, for Dupytren's Contracture and was diagnosed with CRPS shortly afterwards. The surgeon said surgery revealed that there was an inflammatory process going on not related to Dupytren's. Due to several symptoms and a positive ANA test for the past 7 years, I finally saw a rheumatologist this past July. He says that he doesn't think it was CRPS (or Dupytrens), but that it is part of an autoimmune issue. I have been tentatively diagnosed with inflammatory arthritis, early Shogren's and connective tissue disorder. I have symptoms of Lupus (face rash, severe fatigue, fevers, etc.), but I am still on the front end of finding out what is tracking. He started me on Hydroxychloroquine and I believe it has helped my hand - less redness, heat and stiffness. I tell you this with the hope of encouraging you that if you can find a rheumatologist who focuses on inflammation treatment, it may help with CRPS. I discovered that several autoimmune responses are very similar to the symptoms of CRPS. I will be interested to hear how you progress!

@fairn that’s so interesting and thank you for sharing your story with me! I’m sorry you have these issues… I did research and saw a link to auto-immune disease and CRPS and also osteoporosis! I’m starting with a new integrative medicine doctor soon, and hopefully she will look more at the big picture rather than just my symptoms finally. I am sure there is a correlation to all my woes it just takes a savvy specialist to see it. My rheumatologist is an NP, not MD but I don’t know if that makes a difference, she’s very nice and thorough, but I will point all this out to her in January also. Thank you and hoping you feel better, though I hate when folks say that to me I must say, but here’s hoping to some relief!!
Hydrochloroquine was not great for me, very bad depression with it