Question:
I too have a postitive ANA test(very,very,very positive) but my anti DNA and my SM always come up negative. They have for over 18 years. My Rheumy says I have Mixed Connective Tissue disease(MCTD) and one of the things in the Mix is Lupus. I have no Lupus rash but I do get mouth sores and fevers. The other things in the mix are Polymyositis and RA, Sjogrens and SD. So I guess they do base their opinion on other criteria besides the tests…….Gigi
Response:
In article <19990620143542.15721.00002…@ng-fp1.aol.com>, GRamos3414 <URL:mailto:gramos3…@aol.com> wrote: > I too have a postitive ANA test(very,very,very positive) but my anti DNA and > my SM always come up negative. > They have for over 18 years. My Rheumy says I have Mixed Connective Tissue > disease(MCTD) and one of the things in the Mix is Lupus. > I have no Lupus rash but I do get mouth sores and fevers. The other things in > the mix are Polymyositis and RA, Sjogrens and SD. > So I guess they do base their opinion on other criteria besides the > tests…….Gigi
Mixed Connective Tissue Disease is a term which confuses both doctors and patients alike. Apart from "classic" sle, there are lupus variant conditions and this includes MCTD. Because this is a lupus variant condition and not "classic" sle, the anti-dNA test will be negative. This is one of the characteristic features of MCTD. If you would like to find out about this, please go to The St Thomas’ Lupus Trust web site at: http://www.infotech.demon.co.uk and click on the butterfly. On the Content’s page you will find register with the site. Please do this because you will get a special page with all the copyright links (including MCTD), which cannot be accessed from the Contents page. This is written by Dr Graham Hughes, one of the world’s leading experts on lupus. He is the first non-American to be in the American Rhematology’s "Hall of Fame". Although there are differences between MCTD and classic lupus, there are enough similarities for it to be diagnosed and treated as lupus. This is not my opinion, by the opinion of Dr Hughes who is Consultant Rheumatologist and Head of Research at St Thomas’ Hospital, London. Ros — _ __ ___ ___ ____________________________________________ | ‘__|/ / __| / postmas…@infotech.demon.co.uk | | | | __ / The St.Thomas’(Hospital,London) Lupus Trust |_| ___/ |___/ / Web Site: http://www.infotech.demon.co.uk
Response:
Here are some more links which might also be helpful. The Lupus Foundation http://internet-plaza.net/lupus/ Lupus Around the World http://www.mtio.com/lupus Lupus Labs Explained http://www.mtio.com/lupus/lfalt1.htm An Extensive Collection of Articles on Lupus http://slc.quik.com/longhair/lupus/articles.html I recommend you also get Dr. Daniel Wallace’s THE LUPUS BOOK. This comprehensive, up-to-date, accurate, yet fairly easy to read book is highly recommended by the Lupus Foundation. You can get it a most major bookstores as well as online booksellers. Sandra
Response:
[snip] > > I am a 28 yr old female with recurring symptoms of hypertension, rash on > > face, arms and neck, severe fatigue and weakness, joint swelling and pain, > > usually lasts from several days to several weeks. This occurs about every 6 > > wks. This time, I had painful mouth ulcers. My dr. said that I had a very > > high ANA titer and thought that I had Lupus but my anti-dna came back > > negative so he would not make a clear diagnosis. Now my symptoms are back > > in remission (except for the joint pain and fatigue). He says that it is > > just stress. Hope to get a rheumatologist referral next week. Has anyone > > else had a negative anti-dna but a high ana titer? Could this still be > > lupus?
It is a terrible thing to say, but nevertheless true, that unless you are seen by a doctor who is a specialist in connective tissue diseases, that is someone who has the necessary medical knowledge and clinical experience by treating patients who have lupus, it is unlikely that a diagnosis will be forthcoming. The anti-dNA test is probably one of the most disease specific tests. This means that if this tests positive, the patient can only have a diagnosis of lupus and no other connective tissue disease. However, if the test returns negative, this does *not* mean that the patient does not have lupus. Indeed, apart from "classic" sle, there are lupus variant conditions, which means that the doctor has to take a number of factors when diagnosing. these include: 1. full clinical history, including illnesses from early childhood to the present; 2. present clinical evaluation which means observation over time to note any development/changes/additional symptoms; 3. blood tests and another other relevant tests. In the case of blood tests, these must be repeated regularly because blood tests can and do change, sometimes from one week to another. Therefore, a blood test will only say what was present on that particular day. Finally, on the subject of diagnosis, the ARA Criteria is frequently misused and misunderstood by doctors. this Criteria was set up for *classification* purposes only. Unfortunately, doctors use this to diagnose. This is *wrong*. To find out more about diagnosis, please go the St Thomas’ Lupus Trust web site at: http://www.infotech.demon.co.uk. On the Content’s page you will see an article called The St Thomas’ Alternative Criteria, which is written by Dr Graham Hughes, one of the world’s leading experts on lupus. It is worth registering with the site because you will be given a page to bookmark containing links to copyright information which cannot be accessed from the main page. Be well. Ros — _ __ ___ ___ ____________________________________________ | ‘__|/ / __| / Rosalind Share, r…@infotech.demon.co.uk | | | | __ / The St.Thomas’(Hospital,London) Lupus Trust |_| ___/ |___/ / Web Site: http://www.infotech.demon.co.uk
Response:
T IS FOR TINA wrote: Hi Tina, It sounds familiar. My wife has the same symptons but is NOT diagnosed Systemic Lupus but Discoid Lupus. She has to stay under control for the rest of her life but it principally is the non-dangerous type of Lupus as far as we understand. In the Netherlands it is not a sickness with high number of patients and therefor it is difficult to get national information. Good luck Rob & Emmy – Hide quoted text — Show quoted text -> I am a 28 yr old female with recurring symptoms of hypertension, rash on > face, arms and neck, severe fatigue and weakness, joint swelling and pain, > usually lasts from several days to several weeks. This occurs about every 6 > wks. This time, I had painful mouth ulcers. My dr. said that I had a very > high ANA titer and thought that I had Lupus but my anti-dna came back > negative so he would not make a clear diagnosis. Now my symptoms are back > in remission (except for the joint pain and fatigue). He says that it is > just stress. Hope to get a rheumatologist referral next week. Has anyone > else had a negative anti-dna but a high ana titer? Could this still be > lupus?
Response:
I can’t say anything about lupus and ANA results. But if you suspect an autoimmune disease, you might ask your physician if some additional blood tests will perhaps help pin it down. BTW, kidneys are affected sometimes in autoimmune diseases. Have your creatinine clearance tested just in case. Kidney problems usually begin without symptoms until rather advanced. For a panel of immunological tests, look at http://www.labmed.washington.edu/Division/Immunology/ref_chart.html
Response:
You certainly can have lupus yet have a negative anti-DNA titer. I second the advice to see a good rheumatologist. There are quite a few more antibody studies, as well as complement levels, which should be done. Get a copy of Dr. Daniel Wallace’s, The Lupus Book (available at most major book stores and online). It’s comprehensive, current and accurate. No doubt it’ll educate you a great deal, and possibly your doctor as well if you share it with him. It’s highly recommended by the Lupus Foundation as well. Lupus Labs Explained http://www.mtio.com/lupus/lfalt1.htm The Lupus Foundation http://internet-plaza.net/lupus/ Lupus Around the World http://www.mtio.com/lupus Lupus Articles http://slc.quik.com/longhair/lupus/articles.html Sandra
Response:
Tina, It sounds to me like lupus symptoms. One doctor doesn’t have all the answers. Talk to a rhuemy or two or three until someone recognizes that your symptoms aren’t normal. It’s your health at risk here. Don’t stop until you have answers! Good luck and may God bless. George T IS FOR TINA wrote: – Hide quoted text — Show quoted text -> I am a 28 yr old female with recurring symptoms of hypertension, rash on > face, arms and neck, severe fatigue and weakness, joint swelling and pain, > usually lasts from several days to several weeks. This occurs about every 6 > wks. This time, I had painful mouth ulcers. My dr. said that I had a very > high ANA titer and thought that I had Lupus but my anti-dna came back > negative so he would not make a clear diagnosis. Now my symptoms are back > in remission (except for the joint pain and fatigue). He says that it is > just stress. Hope to get a rheumatologist referral next week. Has anyone > else had a negative anti-dna but a high ana titer? Could this still be > lupus?
Response:
I am a 28 yr old female with recurring symptoms of hypertension, rash on face, arms and neck, severe fatigue and weakness, joint swelling and pain, usually lasts from several days to several weeks. This occurs about every 6 wks. This time, I had painful mouth ulcers. My dr. said that I had a very high ANA titer and thought that I had Lupus but my anti-dna came back negative so he would not make a clear diagnosis. Now my symptoms are back in remission (except for the joint pain and fatigue). He says that it is just stress. Hope to get a rheumatologist referral next week. Has anyone else had a negative anti-dna but a high ana titer? Could this still be lupus?
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