Could this be lupus?

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Hi I'm a thirteen year old girl who has really suffered the past 6 months. Diarrhea, nausea, dizziness, fatigue, memory loss, confusion, falling over, headaches, joint aches, weight loss, hair loss and mental fog. They've ruled out parasites, cysts, inflammatory bowel disease and celiac. My GP took a blood test for blood, inflammation, liver and kidney and all that,was found was a low white blood cell count so she referred me to a paediatrician who is making me wait 2 weeks and I'm getting sicker. My mums cousin

has cutaneous lupus erenthynosis and my mums grandma had lupus nephritis so it's possible I could of inherited it. What do you guys think. Sounds like lupus or not?

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8 Replies

  • Posted

    Bel has your GP asked if you are double jointed? If you are this might be the cause. 
    • Posted

      That at your age is far more likely if your GP has tested for SLE Lupus the more likely causes would be Joint hypermobility and POTS. Look up POTS UK IF you have had a blood test to check for Sjögren's/SLE and its negative but you have joints that bend outside the normal range lookup The Beighton Scale and POTS UK 
    • Posted

      I haven't had a test yet so I'll see how that goes.

      Pots is likely but I have a normal heart rate. And EDS doesn't fit the bill as I can't even touch my these. Nothing bends.

      Thanks for the help!

  • Posted

    It very well could be.  There is no test to 100% diagnose Systemic Lupus.  Your antibodies may not show up in your blood early in the disease-or even during periods where you are on medications.  Lupus can take years to dx unfortunately.

    A good doc will look at your clinical symptoms as well as your labs.  There are other tests that can help dx lupus, like checking the complement levels, ANA, sed rate & wbc's.  No two patients with lupus are alike.  Lupus is thought to be caused by a combo of genetic and environmental conditions.  So it's entirely possible you could have lupus!

    The 11 clinical symptoms suggested by the ACR to help dx lupus are: (and you need just 4 out of the 11)

    What are the diagnostic criteria for lupus?

    To help the doctors diagnose lupus, a list of 11 common criteria, or measures, was developed by the American College of Rheumatology (ACR). ACR is a professional association of rheumatologists. These are the doctors who specialize in treating diseases of the joints and muscles, like lupus. If you have at least four of the criteria on the list, either at the present time or at some time in the past, there is a strong chance that you have lupus.

    Malar rash – a rash over the cheeks and nose, often in the shape of a butterfly

    Discoid rash – a rash that appears as red, raised, disk-shaped patches

    Photosensitivity – a reaction to sun or light that causes a skin rash to appear or get worse

    Oral ulcers – sores appearing in the mouth

    Arthritisjoint pain and swelling of two or more joints in which the bones around the joints do not become destroyed

    Serositis – inflammation of the lining around the lungs (pleuritis) or inflammation of the lining around the heart that causes chest pain which is worse with deep breathing (pericarditis)

    Kidney disorder – persistent protein or cellular casts in the urine

    Neurological disorder – seizures or psychosis

    Blood disorder – anemia (low red blood cell count), leukopenia (low white blood cell count), lymphopenia (low level of specific white blood cells), or thrombocytopenia (low platelet count)

    Immunologic disorder –anti-DNA or anti-Sm or positive antiphospholipid antibodies

    Abnormal antinuclear antibody (ANA)

    I hope that helps Ella.  And don't worry-having lupus isn't giving a life sentence.  There's tons of research going on to find a cure and better medications-and many symptoms are manageable.  If this doc doesn't refer you or your not happy and feel brushed off-a second opinion is something you may wanna do.

    Best of luck to you- HUGS!  JJ

    • Posted

      Thanks so much!!

      I have oral olcers, arthritis, leukopenia and malar malar rash. I also twitch weirdly like a seizure and fall over so maybe seizures. I also have chest pain that could be an inflammation.

      Lupus is genetic, I developed early (like my step sister with SLE) and burn very easily in the sun.

      I posted this yesterday and woke up today with inflamed muscles on my chest, abdomen and back. Not too fun.

      Thanks for the support and I hope I get whatever it is, lupus or not, diagnosedc

    • Posted

      Ella-I'm so sorry your going through all this, but you certainly are well informed and asking all the right questions!  That is EXCELLENT!  Stay positive and make sure to get all your symptoms treated.  You are very correct about getting diagnosed as early as possible.  Even though there is no cure-there are good meds that can truly help and the sooner you get on them, the better.  Plaquenil is the gold standard for lupus.  It is an anti-malarial but it works (they don't know why, lol) to slow progress of the disease.

      Another way to get diagnosed is to see a dermatologist and have him take a biopsy of your rashes and he/she can run antibody labs to see if your immune system is overactive.  Most derms are great and they will work with you-and get you IN during a rash flare-up. That's a great way to get diagnosed.  For the nerve issues-I hope you can get your GP (general practioner) to refer you to a neurologist .  They can determine if you are having seizures, what is going on and itreat/help you manage them.  Just don't give up.  You will enventually get heard.  

      May I suggest that you take an adult with you to the doctor to add validity to your symptoms.  Also it's really helpful to keep a journal describing your symptoms.  Sounds to me like your doing a GREAT job Ella advocating for your health!

      Keep your head up!  Attitude is EVERYTHING!  smile

      Emis Moderator comment: I have removed the email address/Facebook details as we do not publish these in the forums. If users wish to exchange contact details please use the Private Message service.

    • Posted

      You need to see the paediatrician. Tell him that you have POTS type problems, look up POTS UK. Also tell him about the mouth ulcers, your headaches especially if they are very severe, also your reaction to sun. Do you have to wear sun glasses if you go out? It's called photophobia?  Has your diarrhoea been investigated? Tell your paediatrician about the inflamed muscles too. What ever the reseason please try to stay as calm as possible, I know you are frightened but stress will only make thinks worse. You are very young, I was too when I had my first symptoms. I am seronegative with Primary seronegative Sjögren's/SLE? I'm 68 now so you have a long life ahead of you, medicine is an evolving science and the paediatric doctor will be there for you every step of the way. However you said at first that you are hypermobile then not? If you are you DO need to mention this too.

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