Undifferential Conective tissue disease, Sjogrens, symptoms of Lupus

Hi @ccorrconro, and welcome to Connect. I'm glad you chose to share your story with us. Would you be willing to share more about your journey? Was this a recent diagnosis? What are your current treatment plans?

I'd like to connect you with a few other members who have had similar diagnoses and symptoms and can share their experiences. @emmie, @mswanda, @conniesgore and @tedib, I would like to introduce you to @ccorrconro. She is looking to share with people who are also managing an autoimmune disease, like Sjrogren's and lupus.

Alyse Brunella | Community Moderator

What treatment are you receiving and what type of doctor. I have the same

I am taking Plaquenil and I see a Rheumotoligist <br />
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Same here. The plaque nil does seem to slow the progression but I don't find system relief. I also have not found a good rheumatologist sine I have moved.my primary care does more than anyone else thankfully@@

I live in the Phoenix/Scottsdale, AZ area. I have been seeing Dr. Lester Mertz at the Mayo Clinic in Scottsdale for over 5 years. He has been treating me for vasculitis and oesteoarthritis with a combination of different medications that have both in check. Many travel from out-of-state for treatment there for a variety of conditions. I wish you the best and I hope this info helped.

my 70+ yr long story - short: get checked for Systemic Sclerosis CREST - very rare, likely because it is overlooked even by some rheumatologists, blood tests can confirm or eliminate. took me the last 25 years (after initial SLE differential in 1998) to get a confirmed diagnosis that 4 local rheumatologists will not accept (& each disagrees with the other 3), even with 2 competing major medical systems here (their own) confirming each other's test results.; trying one last (new) doctor next month, My PCP (is amazing) has their own AI & understands the difficulty of getting it right - and being a savvy senior (from a medical fam) who knows more about myself may be intimidating. am also recovering from 2nd case of zoster sine herpete (also overlooked/aka no-rash shingles aka internal shingles, years of constant PHN) AIs often overlap and may take time to sort out. finding the right doctor for you is key - they are out there. Just don't give up - if you want answers, you must keep asking questions and be your own best advocate. Wishing all better outcomes, sooner!

Hello Ccorrconro, I sent you a hug because I know exactly what you are going through! I just got diagnosed with UCTD in December 2023 as well. I have tested positive for SLE, and Sjogrens Nov 2023 and Raynauds' Disease as well. It's completely stopped me in my tracks, and life is not enjoyable at all anymore. Each day is filled with pain that moves all over my body and is never the same. Does this sound similar to you?

The CT Scans, MRI scans I've had over the past several months indicate "multi-level DDD" Degenerative Disc Disease. Now my brain isn't even functioning normally. My cognitive abilities have declined, memory loss, confusion, foggy brain, unable to concentrate etc. Have you also experienced this? If so, was there something that you did to help? I would love to hear your feedback (if you feel comfortable sharing with me)
Thank you