Greetings all. Had that first visit today. Seems like I tested positive for one of the Sjogrens markers (SSA=100) but negative on the other (SSB=1) and a low-poz ANA 1:40. Doctor did state (and as I've learned here) there are sero neg Sjogrens' folk and people without Sjogrens who have a pos antibody for it. But she said while I could have Sjogrens it also may be a "non-differentiated" AI disease. I had tested neg for lupus and RA blood markers Given lack of dry mouth, eyes, no glands swollen, she recommended no meds at this time but to come back in 6 mos or earlier if fatigue worsens or other symptoms emerge. Discoloration on lower legs did not appear to her to be from Sjogrens. I specifically asked whether saliva test or biopsy should be done and she said no. Liver test normal and she drew blood for kidney functions. I did get copy of blood work and did ask all my (written out) Q's but still Dr. was kinda quick with me. As my fatigue is real but inconistent and not debilitating, I may just see how it goes for a while (depending on kidney blood work, of course). Any feedback?
You doctor seems to be thinking but if it was me I would ask for a referral to a doctor to deal with the legs. There are other autoimmune diseases that can cause problems and lower leg discoloration can be a sympom. You might want to try an interist or a dermatologist. If it was me I would try to find a dermatopathologist. These guys are not common, but they have a lot of training in dermatology related to many pathological conditions and know the right blood work to do.
At least she told you to come back in 6 months for blood work. I would not give up this soon because you have a little bit of positive blood work and that is worth pursuing. One condition is the vasculitis and that can go with several AI diseases. The last symptom I got after 40 years of symptoms was the dry eyes. I had dry mouth but not bad enouogh to tip the docs off, but bad enough to lose all my teeth. Good luck. Irish ;D
Thanks for the suggestions Irish, especially about the legs. I'm new to this so anxious to find out all I can - at a minimum for my mental health. I'll talk with my internist as well. Why can't we ever get firm answers! Guess that's what makes life interesting. :)
Hi Bob,
It does sound like your doctor is running all of the right tests and is open to you coming back in 6 months or sooner if something changes... and that's good! It's also good to hear that she recognizes that you can have Sjogrens and still have negative labs and vice versa so she is on the ball!
Good luck with getting those legs checked out. Irish is right on the money with her suggestions to check them out further!
Hang in there Bob, waiting is the HARDEST part, but you have a new set of friends and family here that will share their experience and knowledge with you. Ask your questions here and we can do our best on how to help you prepare for the next appointment. I agree seeing someone else would be a great idea and not just settle for one doctors opinion! Cortnee'
thanks for the positive reinforcement lynnmarie and cortnee; was told by a doctor "friend" today "well if you're gonna have an AI disease sj is the one to have" easy for her to say, huh?