I met with my rheumatologist today for the first visit. She was very nice and took time with me and answered questions I had. Having been diagnosed via skin biopsy with Tumid Lupus on 5/17/12 I suppose the frustrating part is no one is all that familiar with it and when I listed off possible symptoms I felt like a hypochondriac, lol. She looked over my blood work that was done on 5/18/12 and saw a positive ANA but explained that the test is then taken to the next step to "weed out" those who truly have a positive ANA from those who "might" have it my titer/pattern was negative. So, she checked me out and after asking me questions determined that I do not show signs of SLE, meaning my Lupus is only CLE. That is great news but my concerns are that no one seems to really know for sure if Tumid will progress to SLE down the road....I've seen research indicating it can and then other articles saying it can't. I suppose we are all different and what will be will be, and I'll be happy with the results of my visit today. I suppose my other symptoms are just individual things I have going on that are not related to my diagnosis: headaches, tiredness, memory troubles, mouth ulcers, stomach issues and trouble breathing. If my rash/hives gets worse I'll go back but I really don't see a need for now...my primary can run the ANA test in 6 mos...that is all the rheumy was going to do. So, all-in-all it was good news for me today! :)
Hi lclinefla,
It's lovely to hear you was happy with your first visit to the rheumo and it sounds like you have a nice woman doctor, who sounds like she'll listen.
Your ANA being positive plus a biopsy saying Tumid Lupus means you have Lupus besides which can sometimes go to SLE but it's all according to how strong it is in your system and by what readings your rheumo is getting.
Your symptoms of headaches, tiredness, memory troubles, mouth ulcers, stomach issues and trouble breathing all stem from Lupus....you need to wait to see what comes from furthur blood tests as you could have an autoimmune disease causing these issues.
The trouble with lupus is that it plays with our bloods and fluctuates the blood so it can cause false readings...so therefore you could have something but your results are showing negative.
I'm very pleased for you otherwise & Deenie is doing her best to find more info on Tumid Lupus.
((Hugs & Kisses)) Terri xxx
Terri, thank you for the support. My rheumatologist isn't really conducting any further testing...she said come back in 6 mos or before if i need her. lol. She explained to me that although my ANA was positive that when the bloodwork was taken to the next step the titer came back at <1:40 meaning it is low and that then made my ANA negative. It's all so confusing. I will accept this for now..I don't have joint pain or swelling so I guess I'm good. Hell, I don't know.
Hi lclinefla,
I'm actually not surprised she's having you back otherwise to still keep an eye on you because although those bloods was done, from one minute to the next they can alter but if she says you can get intouch if you need her, don't esitate if other issues arise.
What your rheumo was saying that your bloods can in positive on the first showing of ANA and on the next being a titer does'nt mean it's negative completley...like i said early with your other symptoms you could pssibly have an autoimmune disease but as long as your please with the outcome that's what mainly counts but you ave out full support.
Loads of love Terri xxx