Lupus Support Group

Lupus is an auto-immune disease in which the immune system cannot distinguish between threats (like viruses and bacteria), and healthy cells and tissue. As a result, the body produces antibodies that inflict cell damage, most commonly targeting joints, skin, kidneys and the nervous system. Join the group and find support for coping with lupus.

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deleted_user 11/09/2007

I've had two ana tests several years apart and both came back neg. My first one had a notation on the bottom which said " only 3 to 4 % of people who test this high don't have lupus". I didn't see the second test so I don't know if it said the same thing. If the ana is negative can you still have lupus?

I've been through numerous tests because of the nerve damage, periphal (sp?) neuropathy with my tongue, lips and scalp being numb and they can't find out what is causing it. The muscle and nerve biopsy shows muscle atrophy and nerve degeneration.

After checking websites for symptoms I realize the redness on my cheeks that has been there for 6 years or more might be the butterfly rash. It is more pronounced at times than others. Just in the last few weeks I've noticed redness on my neck that is sometimes almost purple splotchy but not raised. I assumed it was roseau (sp?). There are many other symptoms but I have fibromyalgia also and some of the symptoms seem to overlap. I go to a specialist in Houston next month.

I appreciate any feedback anyone has.

deleted_user 11/10/2007

You can have a neg ANA and still have lupus, mine has never been pos.
If you had a high ANA that is pos not neg.
Make a list of all of your symptoms and take with you to the Houston doctor. Get them to go over it with you.
Good luck......DJM

deleted_user 11/10/2007

The ana tests was low enough the dr. said it was negative. When I go back in a few weeks I'll ask for copies to take with me to the Houston dr.

I have a friend who also has fibromyalgia like me and she tests real high on the ana test also but not enough to say it's lupus.

deleted_user 11/10/2007

the same is for me, my ana always comes back negative but my doctor says it's completely possible to be sero-negative lupus, all my other numers are high. And they diagnose by symptoms and I hope you get the help you need.

deleted_user 11/10/2007

About 3 to 5 % of the people with SLE have negative ANA test results. My results were never very high and some doctors read these as normal. There are other lad test that can be run to determine SLE. I went to a rheumatologist after having joint pain and swelling for months and he diagnosed the SLE. Some GPs are very good but Lupus is an elusive disease and very difficult to track down.
P

deleted_user 11/12/2007

hey lupus comes and goes depending on what shows up like the rash for me would go and come back if youtr test were negative u might still have a litte of it you might not it could be soemthing else maybe you should be tested on what you are alergic to! that could dercribe the rash maybe!
Good Luck!

deleted_user 11/14/2007

My first ANA was positive and my second was negative 6 months later...from what I was told, they can fluctuate depending on the level of inflammation and active disease in your body. My rheumy used that report as only one of many blood tests as well as other symptoms (check the 11 on the lupus website or google lupus symptoms) and if you have had 4 or more, you are considered positive and it sounds like you have. I have learned it is both blood tests and physical symptoms that led my doc to definitive diagnosis.

Keep with it...unfortunately, there is no test that they have found that "positively" shows fibromyalgia, but it is real!

Good luck and hang in there!

Diane

deleted_user 11/14/2007

I've never had a neg ANA test myself, however a friend of mine has always had a neg ANA and she has Lupus as well. Just one of those things with this illness where no one test determines for sure.

deleted_user 11/15/2007

Yes, you can be ANA negative and still have Lupus. There is a book called The Lupus Book that is wonderful. Get the revised edition. It explains SO much about Lupus and the blood testing amongst other things.
((hugs))
EllaBlue

Sillyak 11/16/2007

I havehad constant dizzinessforabout 3 wks post a strep infection. My ANA was low positive and my dsDNA was positive but the internist does not think my dizziness if from Lupus because I slept for days after a cortisone injection when I had the infection. I am going crazy with this head feeling and the doc won't run anymore tests. What other blood work should I ask to be run?

deleted_user 11/16/2007

Sillyak...the dizziness may very well just be your body trying to get well from the strep...it can make you pretty sick! Give it a little more time. Strep can also cause pneumonia and when I have had that, I have had dizziness from the lack of oxygen. Rest, take care of yourself and give it somemore time. Dizziness can also be caused by any number or drugs...that may be why he is reluctant to do more blood tests. Hope this helps. Inner ear infections can also cause dizziness...

Hang in there!

Diane

deleted_user 11/17/2007

I had many negative ANA tests along the way. For years when I did test poz my doc would say it was a low poz and not very indicative of SLE. Later I found out he was very wrong and a poz ANA at any time is diagnostic for SLE... Why would we have antibodies against the nucleus of our own cells if we didn't have SLE? Healthy folks do not produce those antibodies! As the years have gone on I test poz more often and always when in a flare but it wasn't always that way. Good luck with the specialist... remember they are not always right. The first world renowned specialist I saw told me I should just take a walk and stop thinking about Lupus. The second one took me off all my immune suppressants and 3 days later I was in intensive care fighting for my life. Believe what your body and your research tells you. Stay educated and connected with your support group.... the professionals will catch up soon. You'll see.

deleted_user 11/17/2007

I too have a neg ANA but have been diagnosed with Lupus. I agree about making a list of your symptoms, that was the only way I would have been diagnosed. I was told numerous times that I didn't have it. The list of symptoms confirmed it.

deleted_user 11/18/2007

Thanks for all the replies. I'm beginning to understand the symptoms better and the probelms with being diagnosed.

I'm afraid since the specialist I'm seeing is a neurologist rather than a rheumotoligist he may not understand this either. However, I see my rheum. this Wed. and I'm compiling a list of symptoms to show him. He is the one who has tested me for lupus twice and who I see for the fibromyalgia. I've never told him of the symptoms since I thought they were fm. After checking the symtoms of lupus thought I can see I've had some of them for years, especially the redness on the checks and neck. I just didn't know what they meant by butterfly shape.

I hope I'm not wasting all the expense to fly to Houston, hotel, eats and taxi when my other dr. could confirm lupus.

whitsinn 11/27/2007

I have always had a pos ANA. My first rhueme told me that 25% of healthy people test pos on the ANA, WITHOUT having Lupus. THere is also the issue of the pattern presented in the ANA. Mine is speckled, which is indicative of Lupus. My teenage son goes to a pediatric rhueme and she says that positive ANA's dont "impress her." Wow. I wonder what you have to do to convince some doctors that you have the symptoms of lupus???

deleted_user 11/27/2007

I didn't realise that 25% healthy people had poz ANA. Just another whacky thing about SLE I guess. I have never had a butterfly rash either. I've had just about everything else but not that.

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