How did it start?

How did it start?

Posted In: 12 Replies
  • Posted By: annaPEB
  • November 10, 2007
  • 09:34 AM

Hi,
I'm a 16-year-old girl and at this point, I'm starting to get just really confused,
and could use some help.
It started about 2 years ago, and I seem to develop more and more symptoms,
though not enough to be diagnosed with SLE. But I cannot consider them
normal, not any more. I don't know what to do, I was always a healthy person,
and don't want to be hypochondriac. :(
first of all: my ANA came back negative, and I don't have arthritis, which are
two major factors. But I do have the butterfly-rash, and I can't bear the sun.
I have protein in my urine, an elevated RF, and recurrent pneumonias, pleurisies,
and ear-throat-nose infections.
I have a history of collapse ( not from low bp), urticaria, and weird
immunological symptoms, like catching viruses , and bacteria that
aren't considered harmful to the average population, but make me quite
sick (hospital care). I've caught diseases I've been vaccinated against (!),
like pertussis (whooping cough).
I am not feverish. Only subfebrile, and it's sort of like the rash. My joints
are hyperflexible, and only stiff if I don't pop them. Or crack, whatever you like
to call it.
Please answer my questions if you can, and help me out: Can the butterfly
rash appear just on its own, without SLE? Can protein show in your urine
because you are tired? Do vaccinations wear off in 10 years or so? What does
the RF ( in your bloodwork) mean?
All in all, what does it look like?
And something else: I would like to ask all of you with lupus: How did it start?
I know it can be private matter, but please, I need to know. What were your
first symptoms? If you have the butterfly, what yours looks like? I'd be very,
very grateful if you could send me a picture of it

Thanks in advance, and hoping to get some answers. Any opinion would be
appreciated.

anna

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12 Replies:

  • First of all, I highly suggest you see a rheumatologist as soon as possible, and if you aren't satisfied with the care any doctor is giving you/or if a doctor simply dimisses your symptoms as nothing because of negative blood work you need to find a new doctor. Been there done that.You can still have lupus and not have a positive ANA. It's called ANA-negative lupus. Also, sometimes with people with lupus, ANA can be positive one time, but negative another time. So a negative ANA DOES NOT rule out lupus. If all blood tests come back normal and if you have lupus, it's called seronegative lupus.Regarding that critieria, which I assume you are referring to the 11 symptoms that was put out to help with diagnosing lupus, from what I have learned, you do NOT have to fit that criteria. That critieria's main purpose was for clinical trials, meaning you would have to fit at least 4 out of the 11 critieria to partcipate in clinical trials for lupus. So from my understanding, you don't have to match the criteria to be diagnosed with lupus. For the butterfly rash, google it and there are a lot of pictures of it. From my understanding, it could be a blush color to a very red color with bumps.For the protein in your urine, how much was there? Did it say trace, did it have a number, what did it say? Was protein found only one time or a few times? Did your doctor say anything about protein in your urine? Normally, protein in your urine suggests kidney involvement. If there is significant protein present in your urine, a doctor would normally do the 24-hour urine test to see how much protein your exrete within 24 hours. Regarding the postive RF factor: here is a very good link explaining all about the test and what the results can mean: http://www.labtestsonline.org/understanding/analytes/rheumatoid/test.html.For the rash, I think depending on how it is, some cases you can get a skin biopsy to confirm what is causing it, such as lupus. Of course, only a doctor would be able to know that.You really should bring up all of your concerns to a rheumatologist. And if this would be your first visit, I have to warn you, it's a rather long road to get a diagnosis. No two lupus patients are alike, there are no set symptoms. Blood work can be negative one day, postive another day, or always be negative. Some doctors, in my experience, have given up on me or told me it was in my head. This is sometimes expected, if that happens, don't waste your time, find a new doctor, but do NOT give up hope. It could take a while to get a yes or no answer as to what is causing your symptoms, autoimmune diseases are tricky to diagnose and some doctors don't seem up to date. Your best bet is to see a rheumatologist as they specialize in autoimmune problems.Do your research, keep informed. Keep records of everything regarding your medical care in a file, especially blood tests results. Once again, no two lupus patients are alike symptom-wise, which is also why lupus is hard to diagnose.Best of luck, and I hope you feel well!
    papillon22 16 Replies
    • November 13, 2007
    • 07:13 PM
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  • Lupus can actually attack the skin only and is called discoid lupus. You should NEVER have protein in your urine and that should be looked into pronto. The kidneys are very good at keeping protein from entering the urine.Protein in your urine is a sign that something is going on and they should do a 24 hour urine test to see just how much protein you are losing. You are NOT a hypocondriac. A low white blood cell count is often seen in people with lupus. This is not a test that would diagnose you, but it would help point towards lupus. A negative ANA is seen in many people with lupus. One of my best friends has one of the worst cases of lupus. She was on chemo for 2 years to supress her immune system since it was attacking her kidneys. Her ANA is undetectable. You do sound like you could have lupus, but there are many overlapping autoimmune diseases too. In any case I think I remember reading that the average time from onset to diagnose is about 10 years. It can take a long time! Here is a link to diagnostic criterias for some of the most common autoimmune diseases. http://www.arthritis.co.za/criteria.html Hope this helps! Kiera
    Anonymous 42789 Replies
    • November 13, 2007
    • 08:41 PM
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  • Dear, papillon22, Kiera,Thanks for both of the replies, I found the links very useful. It was shocking to read about the ANA - doctors so far have told me it was a sure way of ruling out lupus.I don't remember the exact level of my protein, I know it was something around 1 g/day, 24 hours. My doctor said we better keep an eye on it, and told me to come back for regular check-ups, but then she went to have a baby, and is not yet back...I googled the butterfly rash, and got quite confusing results: they either looked definitely worse than mine, or way paler. Well, you said no two lupus cases are alike, guess you must be right. Thanks for the kind words, I try not to forget them. :)The question remains: How did yours start? Any lupus patients are invited to answer here or send me an email, you can find my e. address in my first post.anna
    annaPEB 29 Replies
    • November 14, 2007
    • 06:53 PM
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  • Hi Anna, Just wanted you to know that the Lupus Board at healingwell.com is a good place to ask questions. You can visit it here: http://www.healingwell.com/lupus/ Kiera
    Anonymous 42789 Replies
    • November 14, 2007
    • 06:58 PM
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  • Dear, papillon22, Kiera,Thanks for both of the replies, I found the links very useful. It was shocking to read about the ANA - doctors so far have told me it was a sure way of ruling out lupus.I don't remember the exact level of my protein, I know it was something around 1 g/day, 24 hours. My doctor said we better keep an eye on it, and told me to come back for regular check-ups, but then she went to have a baby, and is not yet back...I googled the butterfly rash, and got quite confusing results: they either looked definitely worse than mine, or way paler. Well, you said no two lupus cases are alike, guess you must be right. Thanks for the kind words, I try not to forget them. :)The question remains: How did yours start? Any lupus patients are invited to answer here or send me an email, you can find my e. address in my first post.annaYou're welcome!:) It's sad to hear that doctors have told you that about the ANA, as it is completely FALSE. 95% of lupus patients will have a positive ANA, which still leaves 5% with a negative ANA, some people don't have the antibodies that would give the positive ANA, someone I know was told that by an immunologist, and she had lupus. And a lupus patients can have all their symptoms, but not have a positive ANA show up until years later. Other times when lupus patients go in for blood tests, the ANA will be positive one time, negative the next, borderline postive another time. I have read that ANA goes through "flares" and "remissions", too, like lupus. The antinuclear antibodies will show up, produce symptoms in the patient, then sometimes will go back into "hiding", and the patient is left with all these symptoms, and sometimes a negative ANA test. Sadly, a lot of doctors do not know this information or refuse to believe it, which results in a misdiagnosis or no diagnosis at all. When I first starting having issues, I told my internist, and her first words were that I might have lupus. She did a blood test(my first for ANA), and it came back negative. She then told me how I have nothing autoimmune and I certainly don't have lupus, and the rest of the appointment was just awful from there, she gave up on me, but she did refer me to a rheumatologist, who told me about seronegative lupus and how that is what I probably have. So, doctors, believe it or not, can make make the diagnostic process a lot harder, I've been through it, and my advice is although you will get discouraged, do not give up and do not lose hope, because there is that one doctor out there who cares and who will help! Also, I highly recommend reading the book The LUPUS Book, by Dr. David Wallace, it's one of the best books out there about lupus, and it has a whole section on ANA negative lupus. As for the protein, I am not sure if 1g/24 hours is alot or not, but have someone do a blood test to check for creatinine and urea nitrogen, both of these assess your kidney function. Your kidneys aren't something to mess around with. Personally, if I were you, I would be seeking a second opinion on the protein.And the butterfly rash, I noticed that, too when I was researching about it a while back. I would see what a doctor would have to say about it, and if I am not mistaken, I *think* they can take a skin biopsy of the malar rash to confirm whether or not it is lupus, but I am not sure if that's only for the lesions seens in discoid or subcutaneous lupus.With all the research I have done on this(that's what you end up doing when you lose trust in doctors;) ), no two lupus patients are alike, which is one of the reasons why diagnosis is so hard. Lupus is called the "disease with a thousand faces", because of that. It helps so much to do your own research on your health, trust me. Use reliable websites on the internet, rent books from the library, etc. It helps.And I just want to remind you that seeing a rheumatologist is your best bet. It wasn't until I went to a rheumatologist that I started getting answers. But keep in mind, some rheumatologists are just like any other doctor, so if you don't get help, etc., don't waste your time, go to a new doctor.And for the stories, there are many stories about lupus patients and their road to diagnosis on the internet and in books at the bookstore/library. You will find that no two stories are alike. I recommend checking out this website called wehavelupus.com. They are a wonderful bunch of people there who have lupus and it's a very informative website, it's where I went when I first realized I could have lupus.Best of luck, and please remember, don't give up! :)
    papillon22 16 Replies
    • November 15, 2007
    • 00:27 AM
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  • Looks like this all diagnosing story is speeding up: hello there arthritis! :(I woke up in the middle of the night, my left knee is huge, swollen, and it hurts a lot. So I'm out of school. Which sucks, cause I feel fine with the pain meds, just can't really walk. Or stand, or do anything that would require my old left knee.I have an appointment in the afternoon...Again, I cannot thank the info enough. :)anna
    annaPEB 29 Replies
    • November 15, 2007
    • 09:58 AM
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  • Sorry your in pain Anna. Good luck with your appointment and keep us posted :) Kiera
    Anonymous 42789 Replies
    • November 15, 2007
    • 09:36 PM
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  • Yesterday I got to my GP in the evening (there were a lot of kids at the doctor"s office). She took a look at my knee and cried arthritis. Literally. :)She sent us to the ER, and told me not to stand on it (sure...). At the ER a surgeon said he thought it was some kind of skin infection, since it wasn't broken and I COULDN'T have a joint problem, I'm too young.At this point my left knee was twice the size of my right, and could only move it with pain that made my eyes water.He asked for a rtg, then had a cast put on my leg. It's from my ankle to the top of my tight.We got home at 20:30, the GP called to ask how things went, and said don't believe surgeon, is arthritis.I sooo don't care what the ***l it is, just want it to be gone.Please, I have a few questions: Do you use hot or cold pack, when you are in that kind of pain? How long does a thing like this usually take? anna
    annaPEB 29 Replies
    • November 16, 2007
    • 02:43 PM
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  • My goodness, I am so sorry to hear what you are going through, the pain and the doctors. You are NOT too young to have arthritis, there are JUVENILE forms of arthritis, and you are NOT too young to have a condition that would cause joint pain/swelling/redness. I was told the exact same thing when I began to have joint problems, I was told that I was too young(16 yrs. old like you at the time.) This sounds all connected, did you mention anything to them yesterday about all of your other symptoms pointing to a possible autoimmune problem like lupus? Does your GP know about them? I've learned that you have to speak up about your concerns. I'm sorry, but skin infection? I don't know....Did he give you anything for this "skin infection"? I would really ask your GP about the possibility of an autoimmune condition/if all of your symptoms could be related. Ask your GP to refer you to a rheumatologist.As for the pain from the joints, I never had any joint pain as bad as that, but with me, I just wait until it goes away, but then again, mine was never that bad. Have you tried an NSAID like Aleve or Motrin? As for how long it will take to go away, if it were to be something like lupus, it's going to keep coming back, but there are presciption meds to take care of it. Keep us updated, Anna. I feel for you, I really hope you begin to feel better!
    papillon22 16 Replies
    • November 16, 2007
    • 03:47 PM
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  • Hi Anna... How sorry I am to hear about this mess! How can they say that you have an infection? As papillon said, there are juvinile forms of arthritis and Lupus occurs in children and teens. It is impossible to even try to guess how long you will have swelling and pain. You are in a flare and your body is incharge of whatever happens. Both cold and warmth are good for arthritis. The cold numbs and helps with the pain, while the heat relaxes the surrounding muscles. I have found the tips on this page:http://www.orthop.washington.edu/uw/livingwith/tabID__3370/ItemID__96/PageID__132/Articles/Default.aspx to be very helpful. You should read it since there are a few things you need to know about using cold and warm packs on your joints. Hope it disappers fast, but if it doesn't then they will have to accept the fact that teens get arthritis... Hang in there. Hope the pain isn't too bad. Kiera
    Anonymous 42789 Replies
    • November 16, 2007
    • 06:08 PM
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  • I was told the exact same thing when I began to have joint problems, I was told that I was too young(16 yrs. old like you at the time.) This sounds all connected, did you mention anything to them yesterday about all of your other symptoms pointing to a possible autoimmune problem like lupus? Does your GP know about them? I've learned that you have to speak up about your concerns. I'm sorry, but skin infection? I don't know....Did he give you anything for this "skin infection"? Please can you tell me more about how the doctors decided you did have arthritis? What kind of tests did they perform, how much time did it take for them?Well, my GP has known about the other symptoms, just... I suppose she didn't like the idea of me having lupus, so never took them seriously. Otherwise she is a very kind lady, really. When she saw my leg the other day, she said as soon as I get over this, she will refer me to an immunological center.About the skin infection... they gave me another course of antibiotics. It could be either this, or the cast ( the less movement the less pain), but it's better now. My little cousins came around and attached a skull-and-crossbones shawl to it. http://forums.wrongdiagnosis.com/images/icons/icon10.gifHow can they say that you have an infection? As papillon said, there are juvinile forms of arthritis and Lupus occurs in children and teens.One good question... don't know, must have been me, being feverish that made them think of an infection.Thanks for the link, I read it immediately and would have tried many tips, was it not for the cast. But I can put an icy-cold pack on it, and it's helping.Hope you are well, and thanks for the support. :)anna
    annaPEB 29 Replies
    • November 17, 2007
    • 08:41 AM
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  • Hi,it's me again, I have to ask something: Does your rash (when bad) look dry and feel harder than the unaffected parts of your face? Mine has changed in the last few days: now it feels almost frayed to the touch, only looks different. Somewhat evener and "burning from the inside". It's kind of wrinkled too. Has anyone similar experiences?I surfed the net, but found no useful info: discoid lupus is not what it looks like. To me, at least. Please, I need answers. :)anna
    annaPEB 29 Replies
    • December 5, 2007
    • 11:12 PM
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