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Hello, I wonder why all my lupus tests (ANA, double stranded DNA, AST) come negative. Several years ago I had "butterfly rash", since then low WBC (on and off); now I have protein in urine and a lot of kidney and lung pains, shortness of breath, muscle pains, and neurological symptoms, headahes, extreme light sensitivity and fatigue. Last fall and winter I had what seemed like acute inflammation of all blood vessels (never picked up by tests) and a blood clot (aknowleged by the Dr.) How can I get a diagnosis to convince my Dr. I have lupus? When I had a butterfly rash (for ~ a month), I had no idea what it was. I thought it was allergies, and didn't see a Dr. (My family remembers it very well). But my Dr. only believes ANA test, which was negative.[/list]

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I am having the same dilema, I think there a few more tests that can be done for me, but it is convincing the dr. to go for them. I have practically all the symtoms for lupus minus the hair falling out, and also sjorgrens symptoms too. They do want me to get a skin test, but I hear that they are not 100 % conclusive as well. The only good thing is the last Rheumy I went to, did prescribe plaquinil, and my eye dr, plugged the lacrimal ducts and put me on restaisis. I do have a bit more energy. I feel when I have to go back with my rhuemy for a check up that she won't pull me off of the plaquinil. I am also very allergic to Sulpha. It is so frustrating not to really know because of the testing.
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Don't give up with the testing. If you truly feel like you have Lupus, continue to have the tests no matter what the doctor says. Go to another doctor. Is this an Internal Medicine doctor? They usually are very thorough with testing. A friend of mine has an aunt who has all of the classic symptoms of Lupus and she kept getting negative test results until the last time she was tested. Now the doctors are treating her as a Lupus patient. I really believe that you can have Lupus and still have a negative test reading especially in the beginning stages of the disease. Doctors are not Gods, they don't know everything. You have to be the aggressor in your case and insist that they keep running tests. You may use my story as a guideline. I am actually in the same situation as you too. Last year I was tested for Rheumatoid Arthritis and had a negative test result. I am convinced that I have it or Lupus because I have all of the symptoms. I will continue to insist they run test on me every couple of months. I do know that if you have a positive ANA result that means you have SERO POSTIVE Rheumatoid Arthritis. There is such a thing as SERO NEGATIVE Rheumatoid Arthritis...which basically means you have RA but it doesn't show up in your blood. You need to ask your doctor about that as far as Lupus goes. It may be similar. Good luck to you!
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I've have all symptoms of lupus and macular degeneration was diagnoised by dermatoligist for discord 4yrs ago, but when I remember I beleive I've had lupus for 6 years now, my problems seems to be my doctors, they seem to just not beleive me, my doc of 30 yrs is just pissin me off by now, I'm looking for another doc who is knowledgeable about lupus. he just wants to give me a prescription and send me on my way, last time I was there, I was telling the attending nurse why I was there, and she just looked at me and said WHAT, WHAT LUPUS, I just could'nt beleive what I was hereing her say and the look on her face, like this was the first time she was hearing this, mg she has 30 years of my records in her hand. I just was flabbergassed.My symptoms started 6 years ago, doc said rash on my face was allergic reaction to berrys, next time said was infection, next time said maybe rosesca,next time sent me to dermatoligist, by now its been 2yrs, I kept telling him about my extreme fatigue, no energy,joint pain muscle pain, blurred vision,chest pain he keeps telling me its just old age, or I'm over worked, now I have pluristy, Im tried of doing his wait and see approach. 2006 blood work was ok, but he wont order more.every year that goes by I just get worse. Dermatoligst had biopsy, came back positive for lupus dicord, I beleive I now have sle lupus as well. Only on nsaid. but not helping me Im in pain all the time, there just doesnt seem to be any remission for me.Just came from my optical doc for black spots in my central vision he did eye pictures and said there are spots on my retina but couldnt tell me what they were, just said I must have had an infection as a child,said come back in 3 months and we'll look again, I asked him about the black spot Iam seeing and the floaters and halos in my vision that can last for 2 hours, he said I've never heard of them lasting that long and its just old age, you see my frustration here. I know my body and family histroy tell me why they just act like they dont beleive me?
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I was diagnosed with SLE in 2001 after suffering from severe edema to my legs, feet arms and belly. I also had joint pain an fatigue. I went from doctor to doctor and was told there was nothing wrong with me. I finally went to a rheumatologist and as soon as she took one look at me, she said "you have Lupus". I had the traditional butterfly rash (which people assumed was too much makeup or too much sun). The lab work confirmed the diagnosis. I was placed on antimalarial medication and NSAIDS for pain. The NSAIDS did not work and the pain got worse. I am still suffering with swelling to my entire body and pain and fatigue. I see my rheumatologist every 6 weeks and each time she tells me the blood work shows that I am in remission and that I should be feeling better. I do not feel better. I feel worse every day. I am so frustrated. People tell me that the pain is all in my head, but it is very real and so is the swelling.
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***God bless, I feel your pain...take pictures of your swelling & take them in with you to the Dr. next time you go...thats the only I could make the dr.'s believe me!!!!!!!!!!!!!!*** :(
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Diagnosed in 95 when kidneys got involved. Had all the symptoms; some + blood tests. I have almost every manifestation to some degree -Sjogren's, Raynaud's, joint pain, FIBROMYALGIA, fatigue, malar rash, microsopic colitis, kidney disease, and depression. Some come and go; most are constant. I can't take most NSAIDs due to allergies, so I'm on Methotrexate, Plaquenil, Salagen, and various anti-depressants. I also have sleeping disorders which makes everything worse. I can't drive over 30 minutes because I fall asleep.

NOW I have swelling. It is most evident in my feet, ankles and calves up to my knees. But now I realize it is all over and that is why my pants are tight. I've gained 20 pounds in the last 6 weeks without changing my diet. Only change is not being able to walk much because my feet are so painfully swollen. I can't wear my own shoes. I have seen my Rhuemy, Internist, and cardiologist. Had CT of chest and abdomen, sonogram of legs, and an echocardiogram. All negative, but at least the symptom is obvious so I can't be told it is all in my head. Early on I was told to see a shrink - "nothing was wrong with me."

Most doctors don't have a clue. For instance, when I started having colitis, my Dr. (world renowned specialist) told me it had nothing to do with Lupus, even though I told her my symptoms were directly related to my time in the sun. A few months ago I attended a lecture on "Lupus & Gastrointestinal Manifestations." I could have told them 10 years ago!

Stand up for yourself. MD's don't know everything, most of all, your body. You know when something is wrong - we are not hypochondriacs. You are responsible for your own health. Don't depend on anyone else to keep track of your disease.

Anyone have any answers about the swelling? What causes it? How do I fix it?
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My grandmother was told she DIDN'T have lupus repeatedly over the years. After she passed away, results showed they were wrong.

My family is going through the same thing as you. You're not crazy. Try to find a doctor that will listen. You might have to go to 100, but for your peace of mind, do it.


God bless you.
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Hello, I'm new here, and I wanted to comment on your question. I too am going through the same problem. I have all the signs and symptoms, yet negative tests results. I've had redness and bumps across my nose and cheeks for about 3 years now, and I have burst blood vessels on my left cheek. I get bad joint pain in my knees, ankles, and hips, and sometimes my hands hurt too. I also get blisters sometimes in my mouth and other places. I get muscle pain in my thighs, and twitching all the time, but I don't believe that muscle twitching is a symptom. I catch colds very easy, and when I get them, I get them bad! I also get sudden feelings of extreme tiredness, burning sensations in my toes and feet, and I've had two dangerous pregnancies, and one missed miscarriage. I am a 40 year old mom of two. My son is 13, and has Autism, probably due to having to have him early from the dangerous pregnancy. My daughter is 2. I had Preaclamsia (sorry for bad spelling), both times in the pregnancies that survived. This last time when I had my daughter, she luckily was born healthy, and went home with her father, while I had to stay 2 weeks in the hospital, for very high blood pressures. I'm now on blood pressure meds, as well as now I have high colestorol. My Aunt and my cousin both had Lupus, and my grandmother had Rheumatoid Arthritis. My cousin died at the age of 26 due to kidney failure. My Aunt died but not due to the Lupus but lung cancer she got from smoking. The list goes on with my symptoms, seems I get new ones all the time. uggh! :-(
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i just found out i have fibromyalgia and my mother has lupus. my dr keeps testing me for it but it comes up negative but all my symptoms are lupus so could it really be that not fibromylgia
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this is the first time i've blogged b/c i am not sure what i have. the symptoms keep bringing me back to lupus: severe everyday edema of legs, arms, belly, hands, Raynauds, joint pain, fatigue, sensitivity to sun, difficulty concentrating (noticeable change). it's making my life miserable - i have done EVERY home treatment for the swelling but nothing is helping. joint pain wakes me up at night. the only thing i have never really had is a butterfly rash - just flushed skin or patches of red. i'm 23 years old. recently i went through 4 whole days of feeling like my face was going to burn off and i was extremely thirsty (every 10 minutes i was parched no matter how much water i drunk). i took NSAIDs and that help to relieve the pain and burning sensation. then the weekend came and i was outside and again felt like it was burning off so i kept up with the NSAIDs. now that i am back at work, haven't had the burning sensation, just fatigue. the doc did all the tests incl RA and came back negative except for low Vit D (even though i have a lot of dietary Vit D). the doc is not a rheumatologist. i have read that some of you got negative results too - i didn't know you could test negative in a remission?? i have only had the test once - how many times did you take it before it was positive, if it was? do i need to take the test during a flare up??

thanks
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I believe I am in the same boat as most of you but I guess my story is a little different. I went to a new doctor about 2 yrs ago and I was going over my medical history from a personal perspective with her when she told me I might have lupus. I had actually never thought about it before. A few weeks back I went to her because I had been experiencing severe photo-sensitivity which then she wrote up the papers for me to get some testing done. Today i called her for my results in which she told me that 2 of the tests came back with high results (which is not "normal") however i was tested negative. But she also told me that a person can test negative and still test positive in the future. so i believe that she really thinks i have it, but she is still trying to reassure me by telling me there r other things that can cause my joint pains, the lupus like rashes, and so on and so forth. but i have been sick all 22 years of my life and lupus would have really explained some things.
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Man, I feel all of your pain and what hope you bring to me. My entire life, I've had unexplained illnesses and borderline tests. I'll have a bout of very specific symptoms, like when I got a migraine that never went away, but couldn't be helped. There were stomach issues, for which I was treated by the Mayo clinic with no permanent result (the problem still crops up). I've had the hair falling out. Random rashes. Severe allergies and other autoimmune issues. Yet, every test I take is inconclusive. This past year has been one of the worst. I now have pain in the joints in my hands, knees, and feet- excrutiating at times. Nothing I've tried has helped: arthritis strength tylenol, ibuprofen, cymbalta, ETC. In fact, not only have they not helped, but my symptoms seem to be worsening. I have NO energy. Normally, I am very energetic. I usually keep an immaculate house. I usually care, but I'm just t i r e d!!! I've had so many doctors (you name it: ENT's, neurologist, migraine specialists, internists, rhuematist, etc) and some who have literally told me that it's in my head. Well, yes, some of it is. What I don't understand is how I can pinpoint the exact areas of pain and they can't do ANYthing to help! It's so frustrating, but if you're reading this, you've been here. I have always been convinced that I have something autoimmune- that everything is somehow related. But I've lost trust in doctors and it's very hard to find one that I can actually have a conversation with.

I just wanted to thank you all for your previous posts. It makes me feel less crazy...

:)m.

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I feel the same way as most of you. I've been sick for almost two years now and even had to quit working I was so sick. Two years later things have not improved and I am still unable to maintain normal daily functions. Some doctors in the past told me I should be tested for Lupus, but I always have normal labs. So, like most of you, I wonder if the doctors just don't believe me or are missing something because I am starting to believe I really do have lupus (I have EVERY symptom for over a year). However, my blood work is always in the normal range and that has nothing to do with the Dr's opinion so it makes me think that I really don't have it. I mean, if I really had it or another disease, I've been told my labs would not repeatedly be in the normal range which makes sense. It is sooo frustrating. I just want my life back. If I had insurance I would beg my Dr to treat me for Lupus just to see if I feel better. I'm that desperate!
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I am exactly the same,i have all the symptom's,rash like red patch which then gets like a hive,then heals dry and flaky,thinning and falling out hair,aching joints,chest pains and breathlessness,blisters inside my mouth,low immunity to every bug going.The list goes on including ibs,my doctor done the tests and said they were negative.What should i do?Also depression and lethargy.
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