Does this sound like lupus?

Does this sound like lupus?

Posted In: 32 Replies
  • Posted By: Anonymous
  • January 23, 2007
  • 04:00 AM

I was just wondering if any of you out there have lupus and can give me a little insight into my own symptoms. I have been experiencing a bizarre chain of symptoms for the past several years, and have been to several doctors and specialists, none of whom have been able to give me a diagnosis.

Over the last few years, I have had on and off:
- joint pain, worse in damp weather or when the air pressure is changing, sometimes severe enough that I use a cane to make walking less painful
- difficulty breathing (including asthma-like symptoms) and occasional pain when taking deep breaths
- a recurring sore in my nose that doesn't bleed but takes ages to heal
- a skin rash of some sort, mainly on my arms, that produces little white bumps full of fluid, almost like acne but painless and more widespread
- weakness, pain, cold, and numbness in one forearm and hand
- poor circulation in my extremities
- trouble remembering words
- inexplicable bruising
- random bouts of severe heartburn and/or stomachache

I've had an insane amount of tests that have ruled out asthma, Lyme disease, thyroid problems, and arthritis. The really annoying thing about this? I'm 22, I'm not overweight, and I eat better than most people my age.

So, the doctor's are stumped. I'm stumped. Does this sound like lupus to anyone?

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32 Replies:

  • it does sound like lupus to me. i have lupus and also have many of the symptoms you mentioned. remember that the symptoms don't all have to occur at the same time. i had many symptoms as a child, but they "went away" over time. i have a rhematologist that diagnosed me, and she also sent me to an immunologist. and there is no definate test for lupus, so is is very hard to get a diagnoses. i understand how frustrating it is. i'm 32 and was fairly healthy up until a few years ago. if you want to talk, i'm here.
    karen2 7 Replies
    • January 28, 2007
    • 03:14 AM
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  • I also have some of those same symtoms but still havent been diagnosed. Some Drs. have told me I am depressed. I know my symtoms are real,some days worse than others. I am now to the point that I have to sleep at least 12 hours a day to be able to get through 8 hours at work.I just need to know what is wrong with me. How did you finally get diagnosed?
    Anonymous 42789 Replies
    • January 30, 2007
    • 02:23 PM
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  • I didn't list that, but I've had times like that, too, where I just want to sleep and sleep for no apparent reason.I'd also be interested to know what finally got you a diagnosis, karen2. Any step towards a definite yes or no would be helpful.
    Anonymous 42789 Replies
    • January 31, 2007
    • 03:17 AM
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  • there is a list of criteria that doctors look at to diagnose lupus. i think there need to be seven or eight, but none of them have to occur at the same time. i had kidney problems and protein in my urine when i was younger. i've had pluerisy, rashes, seizures, and many others. check the lupus sight to see the list of criteria. my doctor didn't consider the labwork since i was found to have another condition that won't allow lupus, or many other diseases to actually show. never give up though! it's not in your head and depression is actually another part of lupus. i have that too. i went to several different doctors before i was finally diagnosed. get more than one opinion. hope this helps. good luck
    karen2 7 Replies
    • January 31, 2007
    • 04:32 AM
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  • Well, I asked my doctor to do an ANA test and had the blood drawn on Tuesday. We'll see. She got very snippy with me when I requested she do it; who knows why.If the ANA comes back negative, what other tests could/should I get to confirm or deny lupus? I really want to be sure about this before I go worrying about a different disease.
    Anonymous 42789 Replies
    • February 22, 2007
    • 07:39 AM
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  • Your symptoms sound like lupus...let us know how your ANA came out...also sometimes a person has lupus and can have a negative ANA...so other tests like two subset tests, anti-dsDNA and anti-SM, can be ordered...look at this website www.labtestsonline.org and type in ANA for the search. I hope this helps. Sometimes we have to help each other because the doctors do not know everything!I pasted this from the website..."About 95% of SLE patients have a positive ANA test result. If a patient has symptoms of SLE, such as arthritis, a rash, and autoimmune thrombocytopenia (a low number of blood platelets), then s/he probably has SLE. In these cases, a positive ANA result can be useful to support SLE diagnosis. If needed, two subset tests, anti-dsDNA and anti-SM, can help to show that the condition is SLE. If anti-dsDNA autoantibodies are found, this supports the diagnosis of SLE. Higher amounts of anti-Sm are more specific for SLE."
    Anonymous 42789 Replies
    • February 28, 2007
    • 07:39 PM
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  • In 5% of the cases an ANA tests can come back negative, and the person can still have lupus...so other tests like the anti-dsDNA and anti-SM, can be ordered, also. Please keep us posted about your test results...your symptoms sound like lupus...especially if they change all the time and get better and worse!
    Anonymous 42789 Replies
    • February 28, 2007
    • 07:45 PM
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  • Hey my name is Dianne, I'm 21 yrs old and have had lupus since i was 13.. Now i have the bruising, numbness to the forearm and hand, trouble remembering words... also depression, cant sleep because my body hurts..def have an ANA test because thats how they found out i had lupus.
    dbentel 3 Replies
    • February 28, 2007
    • 09:16 PM
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  • The ANA came back negative, which means I get to keep hunting for answers. *sarcastic flag of joy*I'm going to get a dermatologist to check out the rash on my arms, as it now seems to have spread to most of my upper back. We'll see how that goes.Honestly, I can't even be sure if the negative ANA result is true or not. Some other things, like my body temperature and iron count, are different from "the norm", even though they're normal for me.I'm just hoping I can get a real diagnosis soon, whether it turns out to be lupus or not!
    Anonymous 42789 Replies Flag this Response
  • I have alot of your symptoms too. My doctor thought it might be lupus. I had horrible pain in my neck and left shoulder. She said the tests came back negative. The Sed rate however came back high suggesting I had inflammation somewhere!!!! I could have told them that. No further testing has been done. I have given up and told her I feel like I am a hyprocondriac. I have ringing in the ears, very purple hands and feet, which they say is Raynauds disease. But I can't take medication for that because I have severe emphysema and I also have nodular densities in the lung that they are keeping track of. I can really feel bad for what your going through. It can be so frustrating.
    linda kidney 2 Replies Flag this Response
  • Well good luck!!
    dbentel 3 Replies Flag this Response
  • My name is Elizabeth, and I am 15. I suffer from what I believe to be Lupus. I have done my research, and it conclusively says, the doctors are lunatics and have no idea what they are talking about. If any of you ladies with lupus can tell me what you think, I'd be very happy. I have severe rashes on my arms, they go in cycles. First they are like small pimples, then get itchy, red, inflamed, scaley, and the skin flakes off. I lose more hair in the shower than I should. I have had abdominal pains, sharp, stabbing, and in all areas of my belly, not just one, along with nausea. My joints ache and hurt, especially my knees and my hips, when I walk or ride my bike. I have lately had very severe chest pains, it feels like a heart attack (or what I would imagine one to feel like), especially at like 3 in the morning, when I'm laying down, or slumping. It is mostly right below my left breast, and in that same spot on my back. I feel weak a lot, and sometimes get dizzy when I stand. If I were to tell all of the things that ail me, this post would be very long. But basically, I feel fifty, not fifteen.
    Anonymous 42789 Replies Flag this Response
  • My name is Elizabeth, and I am 15. I suffer from what I believe to be Lupus. I have done my research, and it conclusively says, the doctors are lunatics and have no idea what they are talking about. If any of you ladies with lupus can tell me what you think, I'd be very happy. I have severe rashes on my arms, they go in cycles. First they are like small pimples, then get itchy, red, inflamed, scaley, and the skin flakes off. I lose more hair in the shower than I should. I have had abdominal pains, sharp, stabbing, and in all areas of my belly, not just one, along with nausea. My joints ache and hurt, especially my knees and my hips, when I walk or ride my bike. I have lately had very severe chest pains, it feels like a heart attack (or what I would imagine one to feel like), especially at like 3 in the morning, when I'm laying down, or slumping. It is mostly right below my left breast, and in that same spot on my back. I feel weak a lot, and sometimes get dizzy when I stand. If I were to tell all of the things that ail me, this post would be very long. But basically, I feel fifty, not fifteen. I cant tell ya its Lupus, i'm not a doc, but by what you describe I feel everyday.. More along pain and being tired all day. also i snap easily. I find I have mood swings like a pregnant lady, and I'm not. Have they tested you yet for Lupus? I have never had any skin disorder so I can't help you out to much with that. Do you bruise easily?
    dbentel 3 Replies Flag this Response
  • Yes, I have mood swings and get aggrivated over little things easily. My mom has the bruising but I don't. She had told a doctor at one point that she wanted me tested, it was some sort of blood test but she's not sure what type, and it came back negative, but they said my blood count was strange. We think she has lupus, as she has alost everything described and then some. My little brother was born with an autoimmune disorder called an IGA defficiency. He was retested, and it was normal, but now at ten he is starting to have the same problems as my mother and myself. I just feel so sick. I wish there was a miracle cure-all drug that had no side effects.P.S. When I was about nine I went to a specialist to see if I had arthritis, they said that if I was twelve and having the same problem, I needed to come back. I haven't had the chance.
    Anonymous 42789 Replies Flag this Response
  • my sister had SLE for 10 yrs (she died of unrelated, yet really rare Giant cell myocarditis.) lots of cardiologists thought it was myocarditis as result of lupus, it was not.... she needed biopsy to tell them that thoughlupus has i think 12 symptoms. you have to have at least 4. Ana can be negative and you still have it. can take many years for it to be diagnosed. my sister went to many different drs before going to internist, specializing in rhuemetology. That dr pretty much diagnosed her on sight (butterfly rash)look up lupus group in your area and get a dr familiar with the disease. if in fact you have it, you will want/ need a dr who knows it well. Lupus foundation of america. www.lupus.orghttp://www.lupus.org/chapters/locator.aspbest of luck
    Anonymous 42789 Replies Flag this Response
  • It's absolutely crazy for anybody here to look at a list of symptoms and tell someone else that they probably have Lupus. Lupus is difficult to diagnose, even for the experts. And for all the people saying that you can have a negative ANA and still have Lupus, that is extremely rare and every rheumatologist I've ever met will not diagnose Lupus with a negative ANA. The double-strand DNA is more accurate to diagnose it, along with a few other rheumatoid factor tests. People need to be very careful about diagnosing via message boards. You can make someone think they have a terrible disease that they don't have. Out of the symptoms listed by the original poster, very few were considered symptoms of Lupus, but every one of them can be a symptom of something else. There was nothing mentioned that stood out as a big red flag to indicate Lupus would even be considered by any rational physician.
    Anonymous 42789 Replies Flag this Response
  • Excuse me, brother. Are you a doctor? Do you have lupus or some other chronic disease? Do you suffer from undiagnosed symptoms that interrupt and detract from your every day life?While I understand the reasoning behind your post, you have to realize that those of us who are using these message boards are doing so because we'd like a support system. We'd like to hear other people with similar problems assure us that we're not crazy, that there really is the possibility that disease is causing our symptoms and it's not all in our heads.Do I have lupus? Who knows. That's why I'm continuing to do research--not just coming to this message board, but looking around many sites, reading, talking to doctors, and anything else I can think of.And just as a side note:for all the people saying that you can have a negative ANA and still have Lupus, that is extremely rare"Extremely rare" is far different from "impossible". Just because something is normal doesn't mean that it's the case every single time. The fact that I'm 22 and have as many random symptoms as I do definitely not normal.I wouldn't even consider lupus as a possibility without having had a lot of other, much less harmful diseases ruled out...which I have. Multiple times. So cut us a little slack, brother, and if you can't, kindly leave us be.
    Anonymous 42789 Replies Flag this Response
  • The ANA came back negative, which means I get to keep hunting for answers. *sarcastic flag of joy*I'm going to get a dermatologist to check out the rash on my arms, as it now seems to have spread to most of my upper back. We'll see how that goes.Honestly, I can't even be sure if the negative ANA result is true or not. Some other things, like my body temperature and iron count, are different from "the norm", even though they're normal for me.I'm just hoping I can get a real diagnosis soon, whether it turns out to be lupus or not!i too have had a bout of the same symptoms for several years now and can't get an answer. blood test was done at my pcp last yr. as far as i know just a cbc so what is that going to tell anyway? they act like i am crazy or a hypochondriac or something. i have the butterfly rash, unusual break out of sore type rash on chest and neck and sometimes arms and legs. bruising in places that are not usual places that i would be able to bruise running into something. hair loss, arthritis, night sweats (not of age for menopause), problems remembering words or concentrating, you name it it seems like i have had it. i have just been back to the doctor today and he said i had hair loss (duh) roseaca and adult acne and arthritis. yah, okay. i am not buying it. i know my body and i almost certain it IS lupus. i don't have to have a referral with my insurance so my next step is to make my own appt with a rheumatologist. i don't know what else to do. oh, one more thing. facial rash worse after hot shower or out in the sun. it is so noticeable even when i wear makeup that ppl have asked me if i was sunburned. they symptoms seem to say "yes" but the doc says "no". i feel so helpless. i hope i can find some answers and soon.
    Anonymous 42789 Replies
    • November 5, 2008
    • 03:06 AM
    • 0
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  • very interesting! i too have been suffering for a couple of years with some of the same symptoms. i can't seem to get an answer. i have had-butterfly rash, sores on neck, chest, arms, legs and back....take forever to heal. sun sensitivity, hair loss, memory problems, night sweats (not menopause),swollen glands, stomach problems, arthritis, numbness and tingling, fatigue, you name it. the doc always looks at me like i am crazy and i feel like i am at times...because how could i have all these things and it simply be nothing? went to the doc today with the sores on neck and chest and rash on face and thinning hair and was told that i have adult acne, roseaca and thinning hair. hm? well...really? i just don't get it. i had blood work done last year but only a cbc as far as i know. neg. i have decided that since i don't need a referral with my insurance that i am going to find a rhuematologist in my area and possibly a dermatologist and go from there. i still may not get an answer...who knows? i know my body and i know that something isn't right. i do have some good days but very few. i hate feeling like this and not knowing what is wrong with me just makes it worse. i don't give up easily tho' and will continue being persistent until i get an answer. i know how all of you feel. any input would be greatly appreciated.:confused:
    jennifer osborne 1 Replies
    • November 5, 2008
    • 04:15 AM
    • 0
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  • Hi. I'm in the process of being DX with lupus there are 11 blood test which 4 have to be positive you don't have to have positive ANA. I suggest seeing another doctor (snippyness is not allowed) especially when your searching for your OWN diagnosis you need a doctor willing to work with you to find the answers and one that don't have the GOD COMPLEX. See a rheumatologist and also visit www.lupus.org its very informative and theres many in the process of being DX and people that have been living with the disease at various stages. Good luck MAE
    mae3057 50 Replies
    • November 6, 2008
    • 02:32 AM
    • 0
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