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Thread: Hi, new to this...

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    Default Hi, new to this...

    Hello,
    I am new to this site and posted a question on another forum, but thought I would post it again. I was tested with a blood test for lupus about 4 years ago with the onset of symptoms, and it came back negative. Is it possible that I was tested too early in the process to catch it? Thanks for your response. I like this site.... :roll:
    Weebeadyeyes

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    Hello Wee -
    Absolutely. There is no one test for lupus, however, the main blood test they DO look at it the ANA. This (and many of the other blood tests) can be negative at one time, postitve another, borderline another. Sometimes it depends on disease activity, if youre on medication, and sometimes, the blood work is negative, and you can still have lupus. It is rare, however, it does exitst as I have it. After years of most ALL lupus symptoms at one time or another, two doctors finally agreed that I have SLE, despite the negative ANA. There are other blood work that was abnormal, however.
    What test were run back then and what are your symptoms. Lupus is VERY hard to diagnose, unfortunately. Hopefully, you have a doctor who is willing to treat yourf symptoms, regardless of your blood work. Are you sick again? What are/were your symptoms? There are 11 criteria used to Dx lupus, and a person must have at least 4 of them.
    Welcome to the site. There are many here who do not have an official Dx, but are still completely welcome to this site. Let us know how you are doing..
    Lauri
    For God has not given us a spirit of fear; but of power, love and a sound mind. 2 Timothy 1:7

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    Default Thanks for the reply!

    Hi Lauri,
    That is good to know! Yes, I am sick again, and I have figured out my trigger. The sun. When exposed to it, I get this weird rash, and it makes me sick. I took the kids to the lake yesterday, got sick as a dog, and today, I have my typical symptoms. I feel like my spine is swollen 3 x it's normal size, everything hurts joint wise, and I am incredibly weak.

    This has been happening for about 5 years, and like I said, I was tested 4 years ago, but each year the symptoms worsen, and this is the worst year yet. For the last three years, coincidentally in July or August, I end up in the ER with chest pains, but my heart is fine. This year I have not gone, but I am having the same chest pain. I have a permanent red "mask", however sometimes it is better than others. I will call my doctor Monday, as yesterdays illness was too severe to be a coincidence. Also, this year, I have had 2 seizures that I know of, though small. Thank you for answering me, it means a lot.
    Weebeadyeyes

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    Hi - Welcome to the Forum! Yes, it can take a very long time to diagnose Lupus. I had symptoms as far back as 20 years, but they would come and go. I got really sick 10 years ago, was diagnosed with lupus and sjogren's only a 1-1/2 ago & unfortunately, my doctor of 7 years moved away and my new rheumatologist changed the DX. I too get very ill from the sun. Oh what fun all of this is.....
    I hope you get some answers. There are lots of us here to support you!
    Pam

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    I began to get sick after a very serious virus that attacked my lungs while I was eight months pregnant (my son is fine, Thank God). I was on a respirator and in an induced coma for days. They tried an experimental anti-viral which worked. I also went into Vtach (beg. of heart attack) while I was there as well. About 9 months later, I began having REALLY bad fatugue, and just overall joint and muscle pain. No swelling, though, and ALL my blood work was normal. And so it began...My symptoms began getting worse, and I got more of them, many specialists suspected lupus, but would not Dx without ANA test. Started being treated by a neuro, who KNEW something was wrong, and tried to treat me, but ended up just giving me a lot of pain meds. I stopped him three years later, and gave it a couple more tries with diff. docs. I couldnt be humiated anymore. I gave up. Last summer, I began to feel wonderful - it was AMAZING to not have any symptoms - it had been years. I went and got a job again (handnt worked in a couple of years). I began to get sick again this fall - thru winter - thru spring.
    Good people in my life convinced me to try to get to the bottom of this again. Thank God they did. In a couple of months I had pleurisy, horrible neuro symptoms again, really bad edema in lower half of body, was lsing my hair, constant nose and mouth sores, and swollen joints. (There of course is more, just cant remember right now - brain fog..oh, yeah, that too!) Also, the pain in my back and hips was so excruciating and I could barely keep my eyes open for more than an hour at a time.
    Went to see a new GP at my health center (though I live in Boston where there are the best hospitals in the world - I was TIRED of the experts...I needed fresh, new eyes). After getting really sick twice in two months, she said that it looked like I had lupus. At that time, I had completely forgotten about lupus, because SO many said NO. I told her I always have a neg. ANA, but she sasid there are a small percentage that has a neg ANA. She sent me to rheumie. I SOOO didnt want to go, because I really and truly thought he would be dismissive. But, to my surprise, he said the same thing my GP said. He said it was really rare, but that I loooked to be the classic case. I was thrilled (believe it or not). I continued with the treatment the GP had started me on, (he upped it actually) and I go back to see him this month to hopefully go off of the prednisone. Im on 20 mg a day, which people say is low, but I have had some side effects for sure. Im also on 400 mg plaquenil, which i beleive has really started to work. Only two days after being put on these meds I was like a different person. I had MUCH less fatigue (didnt even need a nap!), my swelling went down, my pain was almost gone....it was exhilerating!!
    I try very hard to remain grateful to have been Dx and/or treated at all. I sometimes get very angry, however, that out of all the docs I saw, not one gave these meds a true shot for me. I have had to leave three jobs, and basically havent brought ANY money into this house in years. We struggle financially. I missed out on three years of my childrens lives...alot of things. But....today is different. Though I have this awful, HIGHLY underresearched disease, with no cure, I at least know what Im facing everyday, and know if I flareup, I dont have to tell this stupid story AGAIN to another blank-face doctor.
    I think that there is TOO much discretion given to doctors to say who does and who doesnt have lupus. Everyone is different, the disease presents very differently in everyone, and different doctors have different levels of expertise. Had, just by chance, I had gone to another doctor, I may stil be in bed right now, ready to cash it in - suffering needlessly. I am determined to become involved in the fundraising of monies to try and find a better diagnsotic tool. I almost feel its my responsiblity to help another person like me save years of living in limbo, and in pain.
    I hope you got this far...lol...sorry!! It just kept coming and coming..lol. I like to talk - youll notice that soon enough!!
    Keep posting, keep yourself educated - because NO ONE is going to teach you about this but YOU. This is the perfect site to get accurate info in a comapssionate and empathetic manner.
    Again, welcome and keep posting!
    Lauri
    For God has not given us a spirit of fear; but of power, love and a sound mind. 2 Timothy 1:7

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    Hi Wee,
    It is definitely possible that you have Lupus and that it has not yet presented itself with a pos ANA. I suffered with symptoms from the time that I was 5 years old off and on and I unfortunately did not get diagnosed until I was 36. I had a hard time getting the doctors to take me seriously and test me for anything for years. I ended up getting the Chickenpox at the age of 35 and that is when the Sjogrens presented itself along with the Lupus symptoms. I am very very sun sensitive. Before I finally got diagnosed I would pass right out from the sun if I was out in the sun and started getting dizzy I would have to hurry to get out of the sun or I would literally pass out big time. I would become very very sick from the sun and still do after all these years. I was diagnosed in 1996. I believe that I have a sero-negative Lupus like Lauri, but the pos ANA that presented in 1996 is because of the Sjogrens for the most part. I have been on Plaquenil, Imuran and Sulindac for the past 14 years. I now have to take Vitamin B12 shots every month for the rest of my life due to Pernicious Anemia that just got diagnosed 2 months ago. I believe that you can absolutely have Lupus and be sero-negative. Good luck and I hope that you can get some answers soon, because nobody should have to be sick. God Bless.

    Kathy
    Lupus for many years. Like most of my life. Sjogrens that started at 35 and Scoliosis, Spinal Stenosis, Degenerative Disc Disease, Osteo-Arthritis of the spine, Ankylosing Spondilitis, Periferal Neuropathy, mild CP and now just recently diagnosed with PA. I had a disc replaced in December of 2007.

    Medications:
    Plaquenil, Sulindac, Imuran, Celiac diet, Tramadol and B12 shot once a month.

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    Default Good to know

    Thanks to all who replied. It is sad to say, but it is nice to have others understand the frustration I feel when looking not only for relief, but an actual diagnosis! In three weeks, I have to go back for a second bowel resection because my intestinal walls are awful. Could Lupus also affect this area? I will most likely try to get in this week for another blood test, and see what doc says....
    Thanks again, for all the information, I really do appreciate it.... :lol:
    Weebeadyeyes

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    Hi Wee -
    As far as the intestinal walls - I dont know. Saysusie, our moderator, is a wealth of reliable info, and will probably be along soon to give you some info. I have learned recently that lupus can really affect ANY part of the body...but like I said...I dont know.
    Youll see as you stick around here that SO MANY different symptoms, that we think are unrelated to our lupus, are common amoung us all...this disease is sooo unpredictable...
    I hope your resection goes ok...gosh, that sounds like major surgery...is it? Hope you find some answers and relief soon..
    Keep posting!
    Lauri
    For God has not given us a spirit of fear; but of power, love and a sound mind. 2 Timothy 1:7

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    There are several ways that Lupus can affect the intestines. Inadequate blood flow in the intestines can cause cramping abdominal pain and bloating. If areas in the wall of the intestine develop gangrene, blood will appear in the stool. If the intestinal wall develops a hole (a perforation), surgery may be required.

    Another way that Lupus can affect the intestins is Pneumatosis cystoides intestinalis (PCI). This is an uncommon disorder usually associated with intestinal and pulmonary obstructive diseases, recent abdominal procedures and systemic illnesses. PCI has been reported in patients with systemic lupus erythematosus associated with intestinal vasculitis.

    Many patients with lupus develop painless ulcers in the mouth and nose at some point in their disease, this is very common.

    Abdominal pain in lupus can also be due to inflammation of the lining of the abdomen, infection of the intestines, low blood flow to the intestines caused by a clot, or inflammation of the vessels flowing to the intestines. If the person has a lot of free-floating fluid in the abdomen, this fluid may also become infected causing severe pain. The liver is rarely involved in Lupus.

    You mentioned that you've had surgery previously. It may be that Lupus had something to do with your previous need for surgery. Many of us have discovered that we suffered with symptoms of Lupus for many, many years prior to getting a diagnosis. You may be amongst those who did the same.

    I'm glad that you found us, that you decided to join our family here and that we've been able to help you. As you've seen, our members are full of compassion, understanding, information and support. You are never alone when you are with us.

    Peace and Blessings
    Saysusie
    Look For The Good and Praise It!

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