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Thread: SLE Diagnosis - So we're not crazy after all?

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    Default SLE Diagnosis - So we're not crazy after all?

    Hi Everyone, I look forward to getting to know you all better! I wanted to jump on tonight and post my story because I agree with many of you about how amazingly therapeutic it is to just be able to share your symptoms and feelings with other SLE sufferers who can simply reply, “I completely understand”. For many of us, no one else in our lives seem to understand which can make you feel so alone and hopeless in your darkest hours.

    My name is Miri, I am 30 years old and live in Southern California with my 10 year old daughter, my boyfriend of two years and our miniature pinscher dog Hazel! I work in a technology company as a Business Manager and enjoy gardening, interior design, reading, playing poker, and a good Karaoke night once in a while!

    I was diagnosed with SLE in November of 2011 on the week of my 30th birthday, but have exhibited symptoms since I was 12 years old. I am taking Plaquenil, Ibuprofen, Xanex (rarely), Omega 3 complex, Iron, Vitamin D, Multivitamin and Cranberry. I have had the mylar rash since elementary school but even after nearly a dozen trips to the dermatologist in childhood no one ever put together my symptoms and my “rosacea”. In 2002 after the birth of my daughter, I had a severe flare that sent me to 6 different specialists for a variety of symptoms I nor my doctors could explain. I saved all my medical records and at the time I was diagnosed with “rosacea” on my face, tested positive on my ANA, had an MRI on my knees which showed Arthritis, had xrays which showed pleurisy on my lungs and heart, and was prescribed anti-depressants for anxiety attacks and depression. Even in the presence of ALL those results all pointing to SLE, my doctor failed to diagnose me. It took 9 more years and much effort and pushing on my part to finally be seen by a world-class Rheumatologist who diagnosed me with SLE.

    I have one younger sister and a mom, both with similar AI symptoms as I do. My mom was finally diagnosed last year with Autoimmune Hepatitis and Celiac Disease at 50 years old. She has been suffering for decades without a diagnosis and is now in stage 1 liver failure as a result. My sister is 4 years younger than me with very severe symptoms that cause me to be suspicious that she may have SLE as well -- unfortunately she is uninsured at this time and hasn't been seen by even a primary care physician in several years. Needless to say I am very concerned for her and talk with her often about the importance of prioritizing one's health.

    I am also the proud mom of a 10 year old daughter who herself has been exhibiting what to me are serious symptoms since the age of two and progressively getting worse. She is categorized as failure to thrive as she is 4'2" at 10 years old and weighs 49lbs (she still wears 5-6T clothing). She has digestive problems, anxiety attacks, severe ADD (under the care of a psychiatrist), constant itchy skin, mouth sores and joint pain. I believe she has either Celiac or Crohn's disease and we are working with a great Pediatric Gastroenterologist at this time on a diagnosis.

    Unfortunately, our family has been simply PLAGUED with AI diseases, it is truly tragic. I guess the bright side one can find in all of it however is that at least we can find comfort in one another during our bad times when our partners struggle to understand our symptoms.

    As of this month, I am at the beginning of a new flare and unlike my past flares which had heavy pleurisy, migraines and anxiety attack symptoms from years of heavy stress, this new flare is centered around joint pain and muscle cramping. It’s so hard to explain to my boyfriend of two years that I wake up most mornings feeling like an 80-year-old man, even though I’m only 30 years old! My fingers and wrists are cramped nearly closed, my knees and hips are so stiff I hobble when I walk and my lower back is so achy, I often alternate heating pads or ice packs just to make it through the day. I tend to be able to be active only for an hour or two at a time when the 800mg tablets of ibuprofen have kicked in temporarily. As soon as they wear off I’m pain and stiffness stricken again, often worse than before. I am up to taking approximately 3200mg of ibuprofen a day in addition to my Plaquenil and a dozen vitamin supplements and I still only get a few hours each day when I can truly be productive. The rest of the time I’m either struggling to work on my laptop or sleeping. I work as a Business Manager in a technology firm so thankfully my job is mostly sedentary and even during the worst symptoms, I still manage to make it through my days (most of the time). My coping mechanisms are piles of pills in my purse, 8-10 cups of green tea a day to fight the fatigue, 20 minute naps in my car between meetings on the bad days, and occasionally working from home when I just can’t make it in.

    My boyfriend is very loving and tries his best to be supportive; I have to give him credit for attempting to understand a very confusing disease that I am often overwhelmed and confused by myself! However, when he wants to do a lot of fun activities on a Saturday and I feel like crap I tend to suggest, “why don’t we do ONE fun activity and then relax around the house the rest of the day?”. He’ll constantly try to negotiate with me, tell me to take an ibuprofen and I’ll “be fine”, etc. He just absolutely doesn’t understand the severity of the symptoms I’m experiencing despite his best efforts – mostly because I rarely “look sick” to the outside world! It is very frustrating.

    I’m excited to start posting on this blog. After spending most of my life with unexplainable symptoms that no one else understands, can relate to, or wants to hear about – I’m looking forward to a little “bitch-fest” once in a while with ‘friends’ who can truly relate and understand! We all need a little empathy once in a while.

    ~ Deannegirl

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    Hi Miri,

    Welcome to WHL.
    Usually I don't have the concentration, to read a long post, but your's was easy to read, you are a good writer.
    That your boyfriend doesn't fully understand what you are going through, is normal, only us Lupies know, but at least he is trying. That's a big plus.
    I am sorry, that your whole family is afflicted by these AI issues, I really feel for your little daughter, it must be so much harder on a child.
    It is so good to hear, that you have a great Rheumy ( Rheumatologist), those are hard to come by.
    I am looking foreward to get to know you better.

    Debbie
    I may have been dealt a bad hand, but at least I'm still playing with a full deck. ( most of the time anyway).

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    Hi Miri,
    Welcome to WHL.
    There have been many threads here in which we've discussed heredity and AI diseases. The docs often say that it's not hereditary, but many of us have noticed that an earlier generation had many of the same symptoms that we now have. Unfortunately, many of us have also noticed the early symptoms in our own children. I think that it's fairly obvious that it is hereditary.
    There are many of us here who have gone through the same frustrations with getting diagnosed. Some rheumys will even try to un-diagnose us!
    You seem to have a good grasp on what is going on with you and your family. Feel free to read the threads that interest you and join in with your own comments and questions. There is usually someone hanging around here who will be glad to chat.
    Hugs,
    Marla

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    Saysusie (05-03-2012)

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    hi miri welcome whl family i am from heriditary family my mother has lupus, as well as osteo arthritis and rheumitoid arthritis, i have lupus and celiacs disease, and thryroid disease, my eldest daughter has lupus. and my youngest daughter has aspergers and is on the borderline for lupus she can go one way or the other. my rheumi believes i had signs of lupus in my childhood but was not diagnosed until 4 years ago. so did my eldest daughter but i dinot not know about my own lupus then and would not have recognised the signs .i take plaquenil. twice a day and prednisone once a day 5mg and mexotrexate,15mg once a week. i know your struggles and how hard it can be to be diagnosed some people on the site have not even got a proper diagnoses because of doctors sceptisism. take care of your self look foward to getting to know you. kim

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    "So we are not crazy afterall"

    I so 'get' this comment!

    Spent two years at a very famous medical clinic, after they performed a major surgery that left me with permanent complications. Obtained and read a copy of my medical records and two world famous doctors had the nerve to literally publish that in their opinion, I was crazy because I had a list of over 60 symptoms.

    The following year, a Des Moines, IA dermatologist suspected SLE Lupus and referred me to a Rheumatologist, who followed me for almost two years before he made a firm SLE Lupus diagnosis. He explained to me it was important to wait till completely sure before 'labeling' a medical record with Lupus, primarily because of the impact on insurance affordability.
    Diagnosed in 1991 with Fibromyalgia, followed by SLE Lupus, Raynaud's phenomenon, Sjogren's Syndrome, Vertigo (Autoimmune inner ear and/or CNS), neurogenic bladder and colon.

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    welcome to our family where we know,for certain, that you are not crazy and that your symptoms are very real. As has been said, it has taken many of us a very long time to get a definitive diagnosis (it took almost three years for me) as doctors want to dismiss the possibility of Lupus and/or want to tell us that it is all in our heads. I am glad to hear that you have a good working knowledge of the disease and its symptoms and how they affect you. Do continue to educate yourself about the disease and particularly how it affects you personally. Do not let any doctor, nurse, or PA tell you that what you are experiencing is not real.
    As has been mentioned, there is much debate concerning weather or not the disease is hereditary or genetic; whatever the case, it is too often seen in close family members and, therefore, neither suggestion can be ignored.
    Please know that we are all here to help you in any way that we can and as much as we can.
    I wish you the very best and, again, welcome to our family.

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

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    @Tammy1962--but it's ok to "label" people as "crazy" vs having SLE? LMAO! It's ridiculous what comes out of these jerks mouths!

    @Miri--Welcome Aboard! This is an awesome group of people who will share their knowledge and provide support for what you're going through. We're glad you found us.

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    Welcome and thanks for sharing your story. I am a 30-something mom myself and was also diagnosed in 2011. My rash was also diagnosed as roseacea and came at a time when I was seeing multiple doctors for specific symptoms. I suspect part of the reason for no diagnosis was that as a student I went to the school's medical centre and didn't always see the same doctor. This didn't of course explain my hives in sunlight, migraines, mouth sores, roseacea, diagnosis of mono, etc. Lupus has also affected me in terms of pregnancy loss and it was after my son was born that the pieces started to be put together. My family also has several people affected by AI but since it is a relatively small family, it took a while to make the connection. There are still members of my family who are undiagnosed at this time. I worry about my child and hope that they don't have their own medical mysteries to unravel.

    Anyway; all that to say that you are in fact not alone. I wish you all the best in the search for answers in your daughter's case. It is wonderful not to feel alone, isn't it?

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