Finding it hard to cope with the fears of some test results
Hi. I am newly remarried to a wonderful man, the kindest man i have ever known. My exhusband and i are good friends, but we could not stay married since he couldnt stay faithful. However we do have a good friendship and we have two small children together. My new husband and i have been trying for a year and a half to get pregnant. We have suffered thru too early miscarriages, but being the go getter that i am i asked my doctor for a few blood tests to find out why i was miscarrying, i found these tests on a website for infertility. Anyway i had no idea what these test meant when i had them done. Two of them came back very low positive, and i am terrified. They are ANA titer 1:40 speckled, and anti DNA double stranded, 32. 25 and under is negative, 25-30 is borderline and 30-60 is low positive, again i am 32. I have no symptoms at all. I stupidly, have been reading the internet about these tests and all they are doing is freaking me out. I read on one site dated 2001 that 97% of lupus patients live their normal life span, and yet on another website it's statistics are abysmal, and another says that if a patient has anti DNA antibodies that they are the ones most likely to get kidney failure. I am so afraid i am going to be dead in 10 years from kidney failure. I havent hardly slept in 3 days, and have already lost 6 pounds due to the fact that i am someone who when upset, i cant eat, as opposed to someone who eats like crazy. I am maintaining, for my children a rather normal state of affairs for their benefit, but at night, or when they are out i just sit and cry my eyes out and my hsuband is doing his best to be strong and supportive for me. How can i have all these tests for lupus and feel fine? My family doctor said that he cannot say it is lupus because of my lack of symptoms and because my positives are the lowest possible positives and that with lupus the numbers are much higher, however i am scared to death i caught this inadvertently in the beginning and my numbers will only rise. He said that 25% of the population has the 1:40 titer with the speckled pattern, and that doesnt bother him, and the anti dna positive is so low is is practically borderline. I am seeing a rheumatologist on july 2nd, but i don't know how i will be able to wait til then. I am so frightened my anti dna test is putting me at such a high risk for kidney involvement, this idea is devastating. If they cuaght this in the EARLIEST possible process do you think kidney involvment can be avoided? DOes anyone out tehre have anti DNA and does NOT have kidney involvement? Please offer me some hope. thanks, ann
Hi, I would like to tell you to relax, but I am not sure that would work...You really need to listen to your Dr. He has made this appt for you to see the Rhuem. for your peace of mind. My blood works has tested from one end of the scale to the other..It only depends on if I am having a flare. I have had lupus for almost 20 years. My blood work has been strange, normal, scary, weird, normal....the whole list. I have not had kidney involvment and I hope never to have it. Stress can only make things worse, so please try to relax and wait to see what the dr. has to say.. If you have no symptoms, then just relax and enjoy your healthy days ......
[This message has been edited by tonzie (edited 06-16-2002).]
I read in a very well respected lupus book that over 90% of people who have anti-DNA have systemic lupus--and 50% of people who have systemic lupus test positive for anti-DNA at some point. 50% is a high number, and I am sure that 50% of people with SLE do not go on to have serious major organ involvement. Lupus of the kidney is usually associated with high anti-DNA and low complement. Other lab tests are often abnormal as well. It sounds like you are in good health so as hard as it may be, try to relax. Your anxiety is affecting your health now more than these antibodies. Without the anti-DNA a doctor would dismiss the 1:40 ANA because it is not clinically significant. I myself have tested low positive for anti-smooth muscle antibodies and I always have a positive ANA (the lowest reading ever was 1:40). Positive anti-smooth muscle antibody and positive ANA are the antibody markers for auto-immune hepatitis which is a very serious, life threatening disease. Without treatment a large percentage of people die in 5 to 10 years. However, I show no signs of liver disease, all my liver function tests are normal, and I doubt I will ever develop liver disease. I have a whacky immune system and my doc says the low level anti-smooth muscle antibodies are just another example of my "tendency toward autoimmunity". You may develop other symptoms of lupus, and maybe you won't. Now you are armed with some knowledge, and you are going to follow up with a specialist who can offer expert advice. One thing I wanted to mention is you might want to have your antiphospholipid antibodies tested as they are associated with miscarriage. I was infertile for years and found out I had very high antiphospholipid antibodies. Best wishes to you. Susan
[This message has been edited by SusanM (edited 06-17-2002).]
I'm sure a lot of us on the board understand your frustration, your fears, and desire to find a resolution.
First of all, just because you may get a lupus diagnosis DOES NOT mean your kidneys are going to be affected. If you take care of yourself, drink lots of water, you'll probably never have to give them a second thought. Your Rheumy will monitor it closely with bloodwork and urine tests. (I get mine every month) And, I met a nurse who has lupus that had a lot of lupus-related kidney problems about 10 years ago, but she was put on some new meds and her kidneys are absolutely fine now.
Getting a diagnosis was rather anticlimatic for me - I realized it long before my doctors finally "officially" gave me the diagnosis. And it was a while before I started any meds, and it was even longer before I was to expect any "results". (In reality, I've been on a variety of meds for about 10 months now, and I don't notice one bit of difference except I'm more sensitive to the sun)
Whether you have it or not, you need to learn ways to deal with the stress - because it can only torment you and make things worse. Immersing yourself in knowledge about the disease can be a double-edged sword - knowledge is power, but learning about some of the potential complications down the road can seem awfully overwhelming.
Talk to your doctor and tell him that despite his lack of concern about your situation, you want a more aggressive approach. Is your doctor a rhuematologist or just a GP/PCP? Lupus isn't something that internists see every day - and it's not something that is easy to diagnose in the first place. Get in to see a Rheumy - and make sure it's a good one that deals primarily with lupus in contrast to osteoarthritis - they are different animals. Keep a journal of your symptoms (whether real or imagined! ha ha), make a list of questions, and don't just blindly take any meds that they throw at you - ask why that drug, what you can expect, when you can expect results, possible side-effects and if there are any other drugs with less side-effects. Talk to him about your emotional state and your physical exhaustion - I'm STILL trying to find ways to deal with the fatigue. Knowing when to slow down is essential.
It's a journey. Sometimes it seems like an awfully steep hill ahead, but understanding it, making accomodations to make life easier, and taking care of yourself - you can lead a pretty normal life. Lupus is ABSOLUTELY NOT a death sentence.
Sorry to ramble on.
[This message has been edited by scbagrrrl (edited 06-19-2002).]