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Old 01-22-2007, 11:08 AM   #1
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windycity HB User
Lupus w/o + ANA?

Hey everyone

I have posted on here a few times. I have been back and forth from doctors for the past year or so, and have never gotten a definitive answer about anything. My blood work has only shown abnormalities in the white cells, and a high sed rate, but no positive ANA. I have an inflamed kidney w/blood in my urine, arthritis in many joints, fever, fatigue, and scalp rash. I have also had many digestive problems, possibly IBS. My doctor told me Friday that it is all caused by endometriosis and arthritis, and that I need to see a psychiatrist. This really bothered me because I know I do not suffer from any sort of depression that wouldn't be caused by the fact that I feel like crap all the time. My mom had lupus, and he said that I could possibly have signs of it, but since it is not showing up in my blood I shouldn't worry.

Has anyone ever experienced this from a doctor? I know SLE typically shows up in the ANA but I'm just worried that since he cannot see it in my blood that he thinks I need to see a therapist. Anyways, thanks for listening!

 
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Old 01-22-2007, 03:38 PM   #2
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VeeJ HB UserVeeJ HB UserVeeJ HB UserVeeJ HB UserVeeJ HB UserVeeJ HB UserVeeJ HB UserVeeJ HB UserVeeJ HB UserVeeJ HB UserVeeJ HB User
Re: Lupus w/o + ANA?

Windy City, Much to my surprise, I learned the hard way that there are less common "subsets" of lupus in which people do not necessarily have a positive ANA, for example, SCLE (subacute cutaneous lupus erythematosus) and DLE (discoid lupus erythematosus).

I was Dx'ed with the SCLE subset. It's also sometimes called "Ro-lupus". My ANA was negative, but I was positive for the anti-Ro antibody. I had targetlike rashes on my arms & torso, that were nonscarring & nondepigmenting. These turned out to be the "annular" form of SCLE rash. FYI, there's *another* form of SCLE rash called "papulosquamous", that looks like psoriasis, but isn't. My final skin work was done by a dermatopathologist, who did a deep punch biopsy & also immunofluorescent stain tests.

Compared to my clueless suburban doctors, the teaching hospital rheumatologist I finally sought out took about one minute to get things rolling. Since I'd struck out with local GP's, dermies, rheumatologists, gastroenterologists, urologists, OB/GYN's, etc., I was mightily impressed.

FYI, its not uncommon in the SCLE subset to fulfill 4 or more of the criteria for SLE, making it pretty clear how you can be ANA-negative but STILL FEEL LIKE CRAP. I was told that while 30% or more patients with SCLE are ANA-negative, most are positive for the anti-Ro autoantibody.

I did get good news about the SCLE subset: while problems can extend thru the full range of SLE, odds of kidney & CNS involvement are believed to be lower than in classic SLE.

I've met only one other woman with SCLE. We both positive anti-Ro, severe irritable bowel syndrome, annular rashes, hair loss, pain, fatigue, low-grade fever, and migraines. She was positive for antiphospholipid, had pericarditis, had shoulder joint surgeries for spurs, plus her ANA finally turned potitive. I had urinary stones, UTI's, and anemia.

Likewise, in DLE (discoid lupus), many patients do NOT have a positive ANA and, further, do NOT necessarily test positive for any autoantibody. But in the DLE subset, rashes DO tend to scar &/or depigment. Thing is, because some people with DLE eventually progress to full SLE, DLE also requires diagnosis, treatment, and monitoring.

SUGGESTIONS: (1) Search for info on ANA-negative lupus, like SCLE and DLE. (2) Consult a teaching hospital rheumatologist, where it's more likely that they know & see lupus in ALL its forms.

I feel for you, I truly do. Please let me know if this rings bells with you. Thinking of you, Vee

 
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Old 01-23-2007, 05:57 AM   #3
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realisticchic HB User
Re: Lupus w/o + ANA?

I think it is important to have a Dr. you feel believes you, and you feel comfortable going to with your health concerns. Just because one Dr. cannot put all the peices of your particular puzzle together does not mean you are in need of psychiatric care, it means you need a Dr. with a new perspective and maybe a little more experience in this area. One of the most sad things about Lupus is that it seems like the people who have the disease have to suffer for several years before finally being diagnosed and getting proper treatment . I have heard there is currently research being done to make better diagnostic tests for lupus.......hope for a brighter, less frustrating future .

 
Old 02-02-2007, 06:25 PM   #4
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Shashy HB User
Re: Lupus w/o + ANA?

My God, you sound so much like me. Except no one in my family's been officially diagnosed, but we think my grandmother has it, she was dx with fibromialgia. My internist asked if I see a psychiatrist. I have neg ANA, and blood seems ok. My GI doc is stumped on what's going on with me on his level. Doc's just seem so crazy. Just know that you ARE NOT ALONE!

 
Old 03-21-2007, 05:21 PM   #5
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jodieh823 HB User
Re: Lupus w/o + ANA?

This sounds like me as well. I have had a positive ANA in the past, twice, but it's not positive now,,,, but now I have all the joint pain, IBS, low white blood count, have had protein in my urine a couple of times, but no rashes per say, and all other "Lupus" panel tests (except the high thyroid peroxidase antibodies) are normal, so I'm wondering if it's Lupus, bot I don't think anyone is going to diagnose it until my ANA is positive or I get a rash!! Soooo, I just keep feeling like crap,,,,,YEAHHHHH aren't I the lucky one..... This whole depression thing is a bunch of malarchy too, they want to blame anything that doesn't fit into their box on depression,,,,,, I'M NOT DEPRESSED!!! I know what depression feels like, and this ain't it! Hang in there, it sounds like there are a lot of us out there!!! It would be nice if someone would actually figure it all out, that is what we are paying them for, right???

 
Old 03-24-2007, 08:07 PM   #6
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c57s53 HB User
Re: Lupus w/o + ANA?

I was diagnosed with SLE after many years of doctors telling me everything is fine, nothing showing up, you are depressed, etc., etc., etc. I got to a point where I told my husband I am not going to another doctor. They never find anything wrong with me anyway and I'm beginning to think I am crazy! Well, I can tell you all that are undiagnosed.....if in your heart you honestly know that something isn't right, stay on top of it. With Lupus flares they can last for many months. The fibro is alweays there and worse some days than others, but for me it was when i lost all the muscle strength in my legs, I developed Pneumonia that lasted for months, bronchitis, hepatitis, strange headaches, and a weakness that I had never experienced before where I could barely make it down the hall to the bathroom and had to stop every so many feet to catch my breath that I knew I was very sick and something needed to be done.......so the rheumatologist did bloodwork and finally a very positive ANA, blood complement levels were low, I was put on steroids, antibiotics, puffers and just had to wait it out until i got better. I guess if you wait long enough you will eventually go from not feeling very well to all out down and out and then there is no denying that something serious is going on. It's too bad, especially being female, that w all have to get that "You're depressed", in fact, it is shameful for any doctor to give that excuse. If they just don't know, then say it....don't tell us we are all imagining things. After all, nobody knows our bodies like we do. If a doctor would just listen to his patient....we can diagnose ourselves most of the time.
We do have to be our own advocate when we know things aren't right and just stay on top of it. Start taking notes about how you are feeling on a daily basis but watch for lots of infections that come one right after another....and weakness that totally consumes your body to the point of really scaring you because it is so overwhelming. I know that with SLE it can mimick so many other illnesses and sometimes that's why it is so difficult to diagnose because NOTHING shows up in the bloodwork, etc., but to me that how they should at least suspect LUPUS! Hang in there everyone and stay positive. With God's blessings maybe you actually won't have Lupus but if you do, it will be a mild form with no major organ involvement.

Connie

 
Old 03-28-2007, 04:27 PM   #7
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justtired123 HB User
Talking Re: Lupus w/o + ANA?

This is my first experience in a message board and I am glad that I came across this post. I have been dealing with Lupus for 10 years but only officially the last 5. I had been pretty fortunate only have joint pain (I would add it is severe joint pain daily), but no real skin or organ issues.

In August my body turned against me and I am currently in the flare up from hell. I am depressed, scared, and frustrated with my doctors. I am first curious how those of you with joint pain deal with it. I have been on pain medicine for ever it seems and they are losing their effectiveness so I am taking way more than is good for the rest of me.

My doctor will start to act like she isn't going to continue refilling (why I don't know) but ends up providing them to me until the next time. I don't want the stupid pills but I literally can't move without them.

Do you have any of these issues? Any suggestions that work? I am really at a low point and need help with how to get through this long flare up. Has anyone had a flare up last going on 8 months? I am bless with certain areas of my body not being affected, but right now I am just a mess.

Wow, I never talk to anyone about my Lupus or fears and frustrations that felt pretty good
Quote:
Originally Posted by c57s53 View Post
I was diagnosed with SLE after many years of doctors telling me everything is fine, nothing showing up, you are depressed, etc., etc., etc. I got to a point where I told my husband I am not going to another doctor. They never find anything wrong with me anyway and I'm beginning to think I am crazy! Well, I can tell you all that are undiagnosed.....if in your heart you honestly know that something isn't right, stay on top of it. With Lupus flares they can last for many months. The fibro is alweays there and worse some days than others, but for me it was when i lost all the muscle strength in my legs, I developed Pneumonia that lasted for months, bronchitis, hepatitis, strange headaches, and a weakness that I had never experienced before where I could barely make it down the hall to the bathroom and had to stop every so many feet to catch my breath that I knew I was very sick and something needed to be done.......so the rheumatologist did bloodwork and finally a very positive ANA, blood complement levels were low, I was put on steroids, antibiotics, puffers and just had to wait it out until i got better. I guess if you wait long enough you will eventually go from not feeling very well to all out down and out and then there is no denying that something serious is going on. It's too bad, especially being female, that w all have to get that "You're depressed", in fact, it is shameful for any doctor to give that excuse. If they just don't know, then say it....don't tell us we are all imagining things. After all, nobody knows our bodies like we do. If a doctor would just listen to his patient....we can diagnose ourselves most of the time.
We do have to be our own advocate when we know things aren't right and just stay on top of it. Start taking notes about how you are feeling on a daily basis but watch for lots of infections that come one right after another....and weakness that totally consumes your body to the point of really scaring you because it is so overwhelming. I know that with SLE it can mimick so many other illnesses and sometimes that's why it is so difficult to diagnose because NOTHING shows up in the bloodwork, etc., but to me that how they should at least suspect LUPUS! Hang in there everyone and stay positive. With God's blessings maybe you actually won't have Lupus but if you do, it will be a mild form with no major organ involvement.

Connie

 
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