"Moderately" positive? - Lupus Message Board

Krazykcio · 03-19-2004, 11:01 AM

Hi All,
I just got off the phone with my Neurologist. She said my Lupus (ANA) test came back moderately positive. What does that mean?!? This Doctor went on to say that I may have Lupus....but I may not. So far my C-reactive protein test, anti-phospholipid test and IGM tests are positive. I don't seem to be able to communicate very well with this Doctor, so wondered if someone on this board could help clarify some of this.

I have had a DVT, a stroke, joint aches and pains, rashes etc., etc. I've also had pleurisy and now suffer from seizures due to the blood clot to my brain that left a lesion. Is there such thing as "moderate" Lupus?

I hope everyone is well. Kathy

AngelicBrat · 03-19-2004, 08:42 PM

Hi Kathy,

There is such thing as Moderately positive, but it just means that you have Lupus. The reason why I say this is because you already have Antiphospholipid Syndrome, and many of us have Lupus as a primary diagnosis with a secondary APS diagnosis. Is the Neurologist treating you for the APS? That is the reason why you have had clots form, APS causes the blood to become "sticky". I really am hoping that this Neurologist has put you on Heparin or Warfarin!!! If not, you need to get on it soon before you have more problems related to clots. The Warfarin will help with the seizures too.. they are most definitely related to APS! As for the Lupus, that can be treated also.. I think you need to see a Rheumatologist that specializes in treating LUPUS and APS patients. Please check out the "Neurological symptoms and possible Lupus.. Please read" forum on this board. If you have any questions, please feel free to ask. I really really urge you to get the blood results from the Neurologist too.. I would love to see what the titer was on your Lupus test and the stain. It would say something like 1:640 Speckled or something like that. Talk to you soon!

~Angelic
I have APS, and Lupus too!

Krazykcio · 03-21-2004, 12:08 PM

Hi Angelic,
I am so confused! I'm sure some of this will be repeating my other post, but I think it bears repeating (as far as history.) After I began having seizures my Neurologist did a cerebral angiogram and discovered that I had suffered a stroke from a blood clot to the brain. Since I had already had a DVT, my PCP sent me to see a Hematologist. The hematologist diagnosed the APS. She also said that my lupus anticoagulation test (?) was positive, so she recommended that my PCP send me to the Rheumatologist. She put me on Pravachol (cholestrol lowering med), saying that it lowered the chances of blood clot formation, even though my cholestrol was fine. I had a reaction to it and had to stop taking it. In the meantime, my thyroid tests came back, and I have hypothyroidism.

I went to see the Rheumatologist, and the office intern took all of my information, including my symptoms and prior test results. He told me he was certain that I had Lupus. Then the Rheumy came in and she told me I met some of the criteria for a Lupus diagnosis, but she needed to do a few more tests, and that one of the tests would take three weeks to come back. She said that another one of the tests would definitely confirm or rule out a Lupus diagnosis. Three and a half weeks later I called them to ask about the results. The Rheumy called me back and said that the ANA test was moderately elevated, and my igM and c-reactive protein tests were elevated as well. She said I had probable lupus, but was ordering a few more blood tests to be sure. I asked about Coumadin and she said that she thought my DVT and stroke were a result of my being a smoker, and on hormone replacement at the time (I have since quit!!! and I was only on a very small dose of estrogen when I had the stroke, but wasn't on it for the DVT.) I reminded her about the APS and she said that my 81mg aspirin should do the trick.

About fifteen minutes later the intern called and told me the Lupus tests were positive, and said that I should probably be on medication. Do you think the two of them communicate!?!? He said that the additional tests (that the Rheumy ordered) wouldn't confirm Lupus, since they would only be positive if I was in a flare.

I am not crazy about the Rheumy. She seems to have difficulty listening to me. It's not as if I'm trying to get her to say I have Lupus if I don't.....but I DO want an explanation for the symptoms I have suffered from for a long time! I also want to be protected from another stroke/DVT.

I totally trust my PCP, but he had a back injury which required emergency surgery and won't be back for a few weeks. UGGGGHHHH! Prior to the trip to the Rheumy etc, he said that he thought I had Lupus, and said that the hypothyroidism was probably a result of it. The Rheumy said that the thyroid thing is an auto-immune problem which may have caused the elevated ANA. Wouldn't it be because of the LUPUS!?!

I am really confused, and appreciate your help with trying to understand all of this. Thank you SO much for your help. Kathy

Sampy123 · 03-21-2004, 12:44 PM

You NEED to be on blood thinners with APS! You've already had one stroke, what is your dr. waiting for???? Coumadin (Warfarin) or Heparin, along with aspirin is the regimine you should be on. Aspirin alone is usually diagnosed if you have not had a clotting incident. Coumadin or Heparin is always added, once you've had a clot or stroke. You are a ticking time bomb without blood thinners. I know, I have lupus and APS, already had blood clots and TIA's. I can't stress this enough, aspirin alone WILL NOT protect you. PLEASE talk to you dr. again. Shari

Krazykcio · 03-21-2004, 01:10 PM

Hi Shari,
Thank you for your reply. My husband has been saying right along that I need to be more aggressive about all of this. Then again, HE'S the one that has to "pick me up" before and during my stroke and seizures. I'm not sure if I should ask for a second opinion (if I can get an objective opinion anyway!) or have whomever is covering for my PCP make the call. At least my PCP seems to be paying attention to the whole picture. Thanks again for your input. Kathy