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Lupus testing
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leecat41 posted:
I have had nearly all of the symptoms of lupus since 2004. I've seen many doctors and nearly all of them say lupus at first, but when the ANA comes back negative, they say no. My crp has been over 20 for a couple of years now. I feel horrible and my legs and ankles are swelling so bad it's getting unbearable. I can't even begin to explain my frustration. Can anyone suggest anything that could help? Can you have lupus with a negative ANA? Is there something out there just like lupus that would have a negative ANA?
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allie_bf responded:
It's possible to have lupus with a negative ANA, but the odds are definitely against it. That said, with such a high CRP, it certainly sounds like something's going on. There are a number of rheumatic diseases that all look alike initially so it takes a rheumatologist to tell them apart. Sometimes RA can start with a lot of systemic symptoms and less focal arthritis pain and swelling, and it's the most common of the group so it might be worth checking that out with your doctor. If you aren't already seeing a specialist, try to get in to see one, even if it's a long wait (which it sometimes can be,) but remember that it may take a while for a diagnosis, even with an expert.
 
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leecat41 replied to allie_bf's response:
Thanks! I was beginning to think no one was going to answer. I've actually seen two rheumatologists. One at Vanderbilt. They disagreed with each other about what I had. The one went ahead and put me on Plaquenil to begin treatment for lupus. He said that even though my ANA was negative, he's fairly certain that is what I have, especially given the butterfly rash on my face. But after I went to Vandy and the other doctor said that I didn't have it because of the neg. ANA, I stopped going to him and stopped taking the meds. Now it seems like I'm right back where I started. The last dr that I saw told me to swallow my pride and get back to the only rheum. that was pro-active in my treatment. So I'm still very confused and very frustrated. But I guess I'm going to go back to him and give it a chance. Heck, I don't think that I could feel worse. (my symptoms have eased a great deal on their own, but they've done that before only to come back later.)
 
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Lupylisa44 replied to leecat41's response:
Plaquenil takes several months to start working. How long were you taking it? Could that be why your symptoms decreased? Unfortunately, if you stop taking it, you go right back to square one when you re-start it. I agree with your last doctor, you should go back to the "good" rheumy and have him keep an eye on you.

While it is important to have a doctor you like and who treats you with respect. It is also important to establish a relationship with one doctor who can track the course of your disease process. I wouldn't recommend "doctor hopping" because that will get you no-where fast! Odds are, if you have lupus, you will have a postive ANA at some point. That point most likely being when you are experiencing a flare of all of your symptoms. That would be a good time to get it re-tested.

I was diagnosed 27 years ago, and had a positive ANA at first. But it has always been negative since then and there is no doubt in any of my doctors' minds that I do, in fact, have lupus!

Good luck!

Lupylisa
With love, with patience and with faith, we'll make our way.
 
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leecat41 replied to Lupylisa44's response:
Thanks! I only took the plaquenil for a couple months. I did see some good results while on it but everyone kept telling me that I was going to go blind so that kinda scared me. I have always preached that you should have a primary dr so that they can track symptoms but have been so frustrated that I was just hoping to get an answer. I haven't been to the dr while having all the symptoms. I'm usually the kind of person who toughs it out through the hardest part and then ends up there at the tail end because I'm tired of dealing with it. But now I'll know to watch and go when they all hit. I also didn't know that there was memory fog, vision problems or anemia associated with lupus. I nearly had to have a transfusion in Dec of last year because my iron was so low and I couldn't figure that out. I went from giving blood to needing it. My memory has spells where it seems like I'm 105 yrs old and then will just go back to normal and I have been thinking that my iron was what was causing the vision problems. I'm so glad that I found this website. I've gotten more information from here than from some of the doctors that I've seen. Thank you!!
 
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Octoberschild responded:
I understand your frustrations. I have been diagnoised as having discoid lupus. Which is the one with the butterfly rash across my face. I see a dermatologist for that. I also have a rheumatologist that I see for my Fibromyalgia. Once diagnoised with the discoid lupus, my rheumy began testing me for SLE lupus. I went in every 3 months and had blood work done. Each time it came back negative. Yet I was having all these symptoms that go hand in hand with SLE Lupus. I asked her if it's possible to have SLE and show negative in the ANA test. She said it rarely ever happens, but it is possible. On my last visit with her 6 months ago I was experiencing a great deal of pain in my joints and had some swelling. When I complained to her about it she told me it wasn't surprising to her because as my Lupus progresses I will have these problems. I don't have a clear understanding of all the different blood work she does on me, all I know is she's looking at my ANA and checking kidney function as well as several other things. I figure if there is anything to worry about she will let me know. My rheumy spends a great deal of time with me each visit and always wants to know how I'm feeling, what is new with me, and if I have any questions at all for her. I couldn't have asked for a better doctor!

I hope you find the answers you are looking for. Having a good Rheumatologist is key as is having a good medical team of doctors to treat the many things that go wrong when you have lupus. All of my doctors work closely together in my care of my Lupus. I hope you'll have that too! This is a wonderful site to come to for questions, support, answers, and just to vent your frustrations. We are all in this together!
 
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leecat41 replied to Octoberschild's response:
Thanks so much. My husband and I disagree about the doctors. He doesn't think that it's lupus. But I've decided to go back to the only rheumy that tried to help me and swallow my pride. It has helped ease my frustration tremendously knowing that I am not alone (not that I would wish this on anyone). But I was seriously beginning to think that I were crazy. It's also helped my family realize that this isn't in my head and I'm not just "looking for something to be wrong". I would rather not have anything, but if I do, I would certainly like to at least know what I'm dealing with.
 
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herbgal1 responded:
Hello Everyone,

I, too, am someone who has had negative testing results for Lupus; however, in itself does not mean that you do not have Lupus--at least according to my immunologist. Not only do I have SLE (5 years into diagnosis), but I also have CVID (Common Variable Immune Deficiency), a heart condition, a blood clotting disorder, and several other things, including a warped sense of humor necessary to cope with the chronic disease issue! According to her, she said since my immune system is compromised, tests results do not necessarily show anything.

I had all the symptoms, including the rash. Many doctors told me it was rosacea; however, once I started on the Plaquenil, the rash disappeared--interesting, huh? Both of my grandmothers had lupus,my mother has rheumatoid arthritis, my one daughter lupus, and both daughters have the CVID, too. I have an extremely sensitive system to not only sunlight, but any overhead light system. I work with lamps and not overheads and it has really made a difference. This might be an experiment you may want to try to see if it makes any difference in the way you feel.

If you have more than one type of health issue, the one caveat here is that please make sure that you keep extensive records of everything and please make sure you have a willing participant in the MD field willing to help you orchestrate your way through all the appointments. This is really paramount, I assure you.

An interesting note here, after several years of Immunoglobulin therapy, some of the tests came back positive--one in particular, regarding the clotting factor that affects many Lupus patients.

A hemotologist took a hands off approach and said he would prefer to take a wait and see attitude. Within 6 months, I had a heart attack--not normal by any means--called Broken Heart Syndrome--and then a blood clot in my colon.

I would suggest that you find a reputable Immunologist and have a workup done. My doctor here in Michigan doesn't even send the labs to any of the local hospitals--including the great one right here in the area. She sends them out of state and the wait is a bit lengthy, but at least I know that the results are comparable.

Coping with the disease is really hard on all family members, even if they are supportive. Occasionally, everyone gets irked about things and need to let steam off. My husband and I have been married/together 41 years and he's pretty understanding. But we do have our days, too. Sometimes is is just too demanding to pick up the slack for someone. For us, it's been particularly painful because we haven't been able to take our grandkids for more than a few hours most days. For those with children, I recommend a good friend support system and babysitting trade-off.

God Bless everyone here that has this, or any disease, and those who help them cope. Sometimes just laughing at the absurdity of life is the only medication that helps me through the day.
 
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herbgal1 replied to leecat41's response:
You will not go blind, at least according to my Opthamologist, the chances for any reaction are very rare. I did not know I was supposed to get twice-yearly checkups because of the medication. I waited quite awhile and once I went back to her, a year later, there was no change. I have been on plaquenil for 5 years, so don't let others scare you out of something that helps you.

I can relate to the low iron issue--I had my first blood transfusion about 4 months ago; however, I did not know or even think about it being related to my lupus. One more thing to think about now. Thanks for the additional info to mull over.
 
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glowis responded:
have LUPUS! i have had many ANA tests. some come out a strong positive and some negative. i am in constant pain. i got frustrated with the doctors. i got frustrated with people, family doctors acting like i am a hypocondriac. so i started keeping notes in regards to my activities prior to having the ANA tests. i found if i had been exposed to the sun i would test a strong positive. if i am stressed i test positive. also you should look into a gluten free diet. remember it has to be all gluten free or do not bother. if you slip even a little bit or inadvertantly eat something with gluten you are right back where you started and have to start all over again! but...its worth it! i hope this helps you. lupus is an immune disease and for me has morphed itself into other immune diseases. plus hormones play a big role. investigate the meat you are eating. make sure it is hormone free and antibiotic free. the store packaged meats have hormones and antibiotics. these will also make you swell. you will keep swelling all over. hope this helps!
 
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twilte replied to herbgal1's response:
Could you please let me know the name and location of your rheumatologist in Michigan. The last one I saw did not do blood work unless asked, said to come back in a year, and lowered my prednisone from 5 mg to 3 1/2 mg at which time everything flared and new symptoms occurred. So far every rheumatologist has not wanted me to take prednisone although the Sjogren's handbook recommends it for organ involvement which I have. I've read autoimmune diseases should be treated aggressively, but haven't found this in the 3 rheumatologists I've seen so far.
 
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leecat41 replied to herbgal1's response:
I have noticed that many people with Lupus also suffer from various other diseases. I've only been told Lupus so far. Although the one rheumy told me that I had vit d deficiency.

I have also been told that my rash is rosacea, but it cleared up with the plaquinil. I have avoided the sun as much as possible but I work in an office so I can't really get away from that light. I have noticed that when I'm away from work for a day or so I feel better, but just assumed that was natural. lol

I am not even sure if we have an immunologist around here but I'm going to check.

My husband and I have only been married for a couple of years now and it's really been hard on him. It seemed like all of this hit again just after we were married (joining two ready families together, dealing with court battles because of his ex not wanting him to move on, and my daughter got married all while being on extensive overtime at work). So we've been completely stressed.

You've given me some avenues to try and I am very grateful. I will pray for you and your continued battles!!
To do what is right is not always easy, to do what is easy is not always right.
 
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leecat41 replied to glowis's response:
I've read about the gluten free diet. What exactly does it do for lupus? We are about to start that due to my step-son having Aspbergers but I didn't know that it could help me as well.

Seems like the most important thing that I can do in this battle is to take extensive notes and find the right doctors. I'm definitely going back to the rheumy who was taking action in treating me. You all have been such a blessing!
To do what is right is not always easy, to do what is easy is not always right.
 
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leecat41 replied to herbgal1's response:
I'm going to give it another go. I only took if for a couple of months and not every day because I would forget.

As for the iron, I don't know if it causes it to be low, but everything that I've read says that it will be slow replacing it if you lose it.
To do what is right is not always easy, to do what is easy is not always right.


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