View Full Version : Sero-negative Lupus
09-01-2013, 07:56 PM
Hi, My name is Lisa. I am new here.
I have been going to every kind of doctor there is (I think) for the past 6 months (again).
I have had this rash on my face that looks like a butterfly and my Neurologist noticed it two visits in a row, a month apart, and said he was pretty sure I have "Sero Negative Lupus". Prior to that, they had been testing me for seizures and MS, as I have a lot of the symptoms of MS.
My regular Physician had been saying for months that he felt I had Lupus and possibly a few other Auto Immune diseases that were overlapping one another, which was making it difficult to diagnose.
Anyhow, My Neuro sent me to a Rhumatogist. The Rheume, walked into the room (apparently after reading the notes on the chart from the Neuro and the test results) and said, she does not believe in Sero negative Lupus nor does she believe that I can have any kind of Autoimmune disorder with a negative ANA. That was that and she sent me home.
I am so tired of all of this. Two years ago I went to a series of doctors because of the same symptoms as I am having now, except now they are back and I have several more things going on as well. I am not nuts, I am not making up all of these issues. I have always been considered a workaholic by my peers. I went 15 years without taking a day off for illness, and now I cannot work because my regular physician will not release me back to work. I keep getting turned down for first Short Term Disability and now Long Term, because I have not been diagnosed with anything.
Its not that I want to have Lupus. I do know though, that something is wrong, I am not well at all these days, and I would rather know WHAT is wrong, so the doctors can begin to treat it than to feel like I am crazy.
Once my regular physician and then the Neuro both mentioned this "lupus" thing........I began researching it, and I now truly feel like this is what is going on. It would explain so many issues I have been having.
I am so frustrated, especially since my visit Tuesday with the Rheume.
Have any of you ever been told that you have Sero Negative Lupus? Is there such a thing? Any suggestions on how to deal with a Rheume who doesn't believe in it?
Please forgive me if this post is all over the place and unorganized, but that is pretty much how my brain works lately.
a very frustrated Lisa
Hi and welcome to the WHL family. My first piece of advice would be to go see another rhumey! Remember, you hire these doctors, you can fire them just as easily!
Yes, there is such a thing . Here is some information on exactly what it is.
Basically it means your body has lupus but it isn't showing up in your bloodwork they way
it normally does. They funniest part of that is even in people without seronegativeBasically Lupus we often don't have the bloodwork the way a particular doctor wants to see it. Many of us go months or years tryi g to get a diagnosis so we understand your frustrations.
You know your body. If you and your other doctors believe something is wrong go find a doctor that will listen and ignore this first rhumey. You have that right! We will be here for you every step of the way
09-01-2013, 08:47 PM
Thank you for the link, your welcome and the encouragement! I appreciate . :)
09-02-2013, 10:16 PM
Hi Lisa, I'm Annamarie and new to this forum, too. I am also 'sero-negative' with a qualifier - I've had 2 positive FANA's (1:80 & 1:160 both nucelolar), but my old rheumy said they were false positives and her lab showed negative. Then she dismissed me 'until a positive ANA' in her lab. On the advice of my neuro, I created a log of all the symptoms I've had over the years and took it with me to my new rheumy, who examined me, listened to my story and read my log. 2 weeks later I returned to her office to learn I am positive anti-dsDNA. A confirmation test was done, then another 2 months later and I got a diagnosis. I think that the old rheumy diagnosed me in 2005 with fibromyalgia helped and that I had returned to her several times indicating that The symptoms were getting more numerous and the old ones worse. But, if she doesn't see anything in the labs then 'you're ok'.
At my mom's (she has dermatomyositis) next visit to rheumy (yes, it's my old rheumy. Lol) she told her I went to new doc and have tested positive for anti-dsDNA 3 times. Rheumy said that is very rare to be negative ANA with dsDNA. Duh, we know that and as a rheumatologist in a teaching facility, she should have looked a little further.
From what I understand there could be antigens missing (i.e. not included) in the ANA test kit our doctors use. I have some features of overlap, which goes with the nucleolar pattern, but my most prevalent signs & symptoms are lupus. So, I'm not convinced that sero-negativity exists, rather the antigens for our antibodies are missing from the test kit, in which case we'll show a negative ANA forever.
09-04-2013, 07:55 AM
Hi Annamarie, thank you so much for your reply.
Do you think it would be ok to request to see a different Rheumy in the same office? Will they get upset with me? I do not want to be the hated one. I ended up seeing a new partner that the original Rheumy just took on because his appt schedule was filled up until October. I do not think there are a lot of Rhuemy practices around, and I have to depend on my husband and daughter, who both work full time, to take me to my appts, as my Neuro has restricted me from driving.
I am set to see my PCP and Neuro next Tuesday, and unfortunately the same Rheumy who I saw last week as well. I had to schedule all of these appts back to back as its the only day I could get a ride from my daughter.
I am so frustrated with it all. I even asked my PCP to release me back to work because I cannot keep living without a paycheck, especially with all of these doc appts. He said "not a chance" and that I may as well apply for SSD because he didn't see me going back to work any time in the near future. I either have to go back to work or get disability of some kind and we all know SSD will take a good 2 years or so to get on, if we are lucky. :(
If you don't mind my asking, what are you seeing the neuro for? Some neurological things are automatic SS acceptance and I got mine in 9 months (seemed like forever)
09-10-2013, 04:12 PM
I was initially sent to a Neuro because one of my eyes tends to have black outs. Always only one eye. Sometimes this was accompanied by confusion, disorientation during and after and fuzziness. Other times I was completely aware it was happening and only had a little short lived dizziness, more like a vertigo feeling. The black outs are always for a short time, 30 sec to 5-6 min at most. I was also sent to neuro for one of my legs that was having spasms in my upper thigh. Later the same leg was having knee swelling and pain. (now it is both knees)
After a leg spasm though, my muscles would knot up and I was falling quite often, as that same leg began to drag. The Neurologist was testing me for seizures and MS, both were negative.
I more recently (about 2 mos ago) developed a rash on my face, that would redden more upon going out side. The sunnier it was the redder it would get. According to the Neuro, it looked like the butterfly rash.
The Neuro tested my ANA and other blood work twice. Both times I was negative ANA.
My Neuro then decided he felt I had "Sero-Negative Lupus". He sent me to a Rheumy about 2 weeks ago. What the Rheumy said Is in my first post. While I was there 2 weeks ago, she also did a bunch of blood work. Today I went back for a 2 week follow up...........most of the blood work showed nothing significant, but what did surprise me is now my ANA is POSITIVE. According to the Rheumy, that means nothing.
I feel though like something in me must be going on for me to have 2 negative ANA's and now a positive.
I am also having several other issues: Fingertips get tingly and turn reddish purple when I am cold (and also when I am stressed or anxious). My fingers and knuckles swell up often, my hands get very sore. Even gripping a pencil when they are swollen is difficult. I also get pain that radiates up to my wrist. I do not have mouth sores, but I do have nose sores? I am on my third bout of Pleurisy in the past 2 years.
I am very very sensitive to light. Sunlight and fluorescent lights especially. There are a few other things going on as well.
btw, is anyone out there from the North GA area? Any one know of a good Rheumy in N. Georgia?
Sounds like he is on the right course. Most of my sores would be in my nose too. OUCH those hurt!
Glad you are looking into all of this but just know that there is such a thing and rare doesn't mean never. I actually know someone with it myself!
09-17-2013, 12:28 PM
Lisa, sorry so long before reply, haven't been feeling well.
I went to a different practice for new rheumy, and even with that, the new one was inclined to lean toward old rheumy diagnosis until blood work came back. She then reviewed all my signs/symptoms from my log and her exam in addition to confirmation anti-dsDNA test coming back positive to arrive at diagnosis. My dsDNA continues to increase with each of the 4 tests done so far, so I guess that would also solidify diagnosis.
Is there another practice available in your area? We only have two in my city, but several others within 40 - 70 miles of me. I went to one in my dermatologists practice that has offices in several cities close to me. The first rheumy is with our local medical school. My current one is in private practice, but she's much more involved in lupus research than the one w/med school.
10-13-2013, 10:59 AM
I have a very similar situation to Anname, my ANA came back negative but my anti-dsdna was borderline positive (it was 33 the reference range was 0<30 as negative). I have a Rheum appt at the end of the month so we will see how it goes. Have they run any additional blood work to explore the possibility of more specific antibodies? I know a lot of times they won't exercise that option if you have a negative ANA but with all of your symptoms it may be worth it. I hope you arrive at a diagnosis real soon. It is so challenging trying to keep up with the normal day to day activities isn't it? I just want you to know you're not alone!