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Thread: New person, please help

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    Default New person, please help

    So I stumbled across this site, and I like that you could ask questions and get them answered by real people who know what you are going through.
    I doubt my story will be any different, but here it goes.

    I have been getting sick on and off for the past 6 years now, and I am only 20. I have a wide array of symptoms that will come and go, or not leave at all, some will come back in groups, then sometimes it's just one will return.

    I am so sick of doctors not believing me, or not agreeing that there might be a slight possibility that something is wrong. The biggest offender I have is severe joint pains, and it really does hurt me when people say, "Your too young to have joint problems." So I am feeling like I am going crazy.
    I just want to know what this is.

    I recently found a doctor who believed me (mostly), and had me get an ANA test, but when it came back neg she stopped right there and told me that it is only my fibro. But I can't help but feel that there is more to this than just fibro.
    Here are as many symptoms that I can think of:
    ~severe joint pain, that can keep me in bed for days at a time
    ~rash on the top of my legs, collar bone, arms, and back (gets worse in the sun)
    ~insomnia (which I am taking Ambien for)
    ~depression (which I am taking Prozac for)
    ~fatigue
    ~restless legs
    ~extremely jumbled mind, it is very hard lately for me to form sentances
    ~weight gain/loss (depends on the flare)
    ~trigger points (from the fibro)
    ~it hurts to take in to much air (I can't run anymore, it feels like I am inhaling daggers after a while)
    ~ TMD grinding my teeth too much
    ~severe to mild headaches
    ~chronic eye infections (I don't remember the whole long scientific name for it)
    ~floaters (I'm not sure if that's related or not)

    Please help me, please tell me what you think. I can't take this anymore.
    Bless you all!
    ~Clare

    "Always remember to be kind, for every person you meet is struggling through their own long hard journey"

    "You may be one person to the world, but to one person you may be the world."

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    Hey Clare...gentle hugs for you...

    I understand the frustration...It took me 10 years of telling my doc and being treated like it was all in my head...it might have been longer than 10 years come to think of it.
    Find another doctor and keep looking for one who will listen and at least take the appropriate tests. My doctor that I was using never even took some of the bloodtests for autoimmune...it was a general practitioner of my friend's who listened and tested me for everything he could think of and I ended with a high speckled ana and liver envolvement as well as others.

    I do hope you find the answers, but until then this is a great place to get understanding.
    Oh...I have alot of floaters, too...If you find anything out, let me know.

    hugs.....
    I have promises to keep and miles to go before I sleep, and miles to go before I sleep.......Robert Frost

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    hi clare,

    i am soooo sorry that you are going through this difficult time. It is disheartening to see so many young people dealing with this.

    I too was first diagnosed with fibromyalgia. For 13 years my dr. and I felt there was more to my situation than fms,but i did not have enough symptoms for her to be able to diagnose the lupus. My tests came back positive, but the symptoms were not there....even the mayo clinic did not diagnose the lupus. Now, 13 years later, all of the symptoms are there, and lupus is added to my diagnosis. I guess my point is, if you feel comfortable with the dr., keep working with them, fine tune your answers about symptoms, and encourage more specific testing. There are speciality labs accross the country that your bloodwork can be sent to, etc. ...there are options, and hopefully your dr. will keep probing for a diagnosis.

    phyllis
    Phyllis

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    You did not mention what type of doctors you have been dealing with. From the symptoms you've listed, I would suggest that you see a rheumatologist. Many primary care doctors do not know enough about auto-immune diseases to know that the ANA test is merely a screening test. It does not determine or rule out a diagnosis of Lupus. A rheumatologist would probably have known that, if the ANA is negative and the patient is exhibiting symptoms of Lupus, other more specific tests should be run.
    Those tests are:
    1) b. DNA antibodies
    This is the highly specific test for lupus. For some unknown reason the presence of antibodies against double-stranded DNA is the hallmark of lupus. It is very specific for this disease and rarely found in any other condition. Strongly positive anti-DNA antibody tests provide almost total proof of the diagnosis. The level or titre of the antibodies provides a rough guide to disease activity and is used by physicians to monitor the ups-and-downs of the disease. It IS possible to have negative ANA with positive DNA antibodies.
    2) ENA
    The term 'extractable nuclear antigens' applies to a battery of other antibodies which are found in lupus variants such as Sjogren's syndrome and mixed connective tissue disease - these will be discussed in a separate fact sheet.

    3) Antiphospholipid antibodies

    These tests are associated with the important problem of 'sticky blood'. Patients with high levels of antiphospholipid antibodies have an increased tendency to clotting both in the veins and arteries, and in pregnant women with these antibodies there is a risk of thrombosis of the placenta leading to miscarriage. It is now recognised that many women with recurrent miscarriages have antiphospholipid antibodies and that successful pregnancies are possible when the patient with sticky blood is treated either with aspirin or with an anticoagulant.

    4) Complement

    This is a term used for a group of proteins in the blood which are involved in the immune process. In active lupus, the levels of complement (usually measured as C3 and C4) are low and these often provide a clue to the degree of disease activity.

    5) Also, there are other general blood tests that can be run. For example, in addition to the specific blood tests, the usually requests a full blood count and biochemistry. The blood count in lupus can show low white cells, low red cells and low platelet counts. Biochemical tests are important, especially the creatinine and urea which are raised if there has been evidence of kidney disease. Two blood tests, the ESR and the C-reactive protein (CRP) are used as barometers of disease activity.

    6) Urine tests

    Testing the urine is vital in lupus patients and it is the practice in some lupus clinics to teach all patients how to test their own urine. The simple test uses a 'dip-stick' to check for protein (often the earliest clue to the presence of kidney disease). More precise urine tests are performed on a MSU (mid-stream urine - a sample of urine sent to the laboratory for microscopic analysis). Under the microscope, the presence of white cells, red cells or clumps of cells (casts) is recorded to look for all possible signs of kidney disease. Finally, all urine sent to the laboratory is tested for bacterial infection.

    7) There are more complicated tests that can look for more widespread organ involvement. These will include echocardiograms, brain scan (NM), kidney scans and, if there is evidence that the kidney is inflamed, possibly a kidney biopsy.

    Having said this, it might be advisable for you to find a rheumatologist, insist that your symptoms are real and that they take you seriously and insist that the appropriate tests be run so that you may start treatment for your symptoms.

    I wish you the best of luck and keep us advised about your search for a doctor who specializes in auto-immune disorders (eg. rheumatologist).

    Peace and Blessings
    Namaste
    Saysusie
    Last edited by Saysusie; 02-26-2009 at 01:23 PM.
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    I'm and new to this forum and actually haven't been diagnosed. It seems most people have trouble finding a doctor who recognizes something is wrong. However, my doctors have been waiting for me to develop lupus for 10 years now.
    In junior high I was diagnosed with dermatomyositis, severely enough that I was predicted to die before I turned 18. Well, at 23 I'm still here--the dermatomyositis miraculously went away (God is good). But at the same time I had the butterfly rash, mouth sores, and Raynauds--and my doctor was just waiting on the positive ANA test to cinch the deal. She was so sure that I would develop lupus that she had me get the lupus lab panel done every six months for three years, and, to her great disappointment, I never had the positive ANA she was hoping for and the butterfly rash went away.
    I have had perniosis and Raynaud's since then and pretty much forgot all about the possibility of lupus. This past April I started becoming increasinly fatiqued with headaches and vertigo. I am a distance runner and even competed on my college track team, but now I get dizzy after a mile and short of breath going up stairs. I do have hypothyroidism but that is controlled. I have foot pain and hip pain, which is chronic but has become worse in the past months. I've also had an increase in mouth sores. As a nurse, I was taking care of a patient with lupus and she told me that mouth sores was the first sign she had lupus. That sent alarms off in my head, which lead me to ask my current doctor to do the lupus labs. And, what do you know, my ANA is positive now. My former doctor would be so pleased to know.
    I know you don't have to have all of the criteria at once for a diagnosis of lupus, but is 10 years apart reasonable for this diagnosis? I am seeing a rheumatologist in a couple weeks, so we'll see. Any thoughts on this?

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    Thank you all soo much, it means a lot to know that at least someone believes/understands what's going on with me right now. This site is giving me a lot of peace of mind.

    For Saysusie:
    Thanks again for replying. I saw a Rhuemy when I was about 15, I was a freshman and I missed 52 days of school, because I was soo sick. He was a class A meany. From the moment I walked in, he didn't believe me. He gave my mom mean looks when she would finish sentences for me, because I was in so much pain it was very hard for me to concentrate.
    So now, thanks to these forums actually, I am going to make an appointment next week. That first visit had me pretty put off to doctors in general, but now knowing people have had the same thing happen, it doesn't seem as scary. It's almost live having an invisible buddy on your side :^)

    For Peanut Butter:
    Thanks for posting! And huge congrats on the dermatomyositis going away!! I have no idea what that is, but it doesn't sound good.
    The few things that come to mind, from the little I know about lupus it, the "flares" and "remissions" (two words that are quickly becoming regulars in my vocabulary) can be days apart or they can be years apart. And sometimes a person can be in a constant state of "flare". So maybe that's why it took so long for a positive ANA test. Again, that's what I have read.
    I can also tell you, on a personal level, that it (pardon my college wording) totally sucks being in your 20's and feeling like you're 86. And wanting to go out on the town with friends, and wanting to be able to pull an all-nighter for exams and feeling like poop.


    Thank you also to "mountaindreamer" and "sick n tired", your posts are very helpful and so very appreciated.


    Love to all
    ~Clare

    "Always remember to be kind, for every person you meet is struggling through their own long hard journey"

    "You may be one person to the world, but to one person you may be the world."

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    Clare - I know the feeling and like Peanut Butter my rheumatoligist has been waiting for my ANA to turn positive again (i had one positive at 20, then all negatives since then, i am 32 now) I was disgnosed with Juvenile rheumatoid Arthritis at the age of 8 and then at 18 rediagnosed with RA. For many many years, my biggest issue was joint related as well but in my teens I kept getting what I thought at the time were random other issues. I had ovarian cysts, issues with my nervous system and other things.

    It wasn't until my mother (who had been on prednisone her ENTIRE life for asthma (she is 57 now) and the prednisone kept her syptoms of lupus at bay) was disgnosed with Lupus when I was 24/25 that her Rheumatoligist suggested I be reevaluted and then came the tests, the bloodwork again, ect. Now I am diagnosed with Lupus and RA and Sjorens. But the last two tests, my ANA was negative so who knows. Personally, I call my disease rhupus, but only becuase if I don't name it I can't fight it

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    Where at in Michigan are you? If you are in SW MIchigan...I can offer the name of a great Rheumy that will work hard to get you feeling better.

    Let me know...
    Money cannot buy you happiness but it can buy you a big enough boat to allow you to pull up along side it!!! - David Lee Roth

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    hi peanut butter,

    yes, so many of us struggled for may years before all of the necessary parts fit together and a diagnosis was made. don't really know why we would push for such a diagnosis, but we do. i guess, once we know what it is, we feel we can better treat it....but i don't know about lupus. every time i think i have a grasp on this disease, something jumps and surprises me.....oh the many visits to the dr and hospital and am always told "it must be your lupus" ugh, i hate those words.

    welcome, i hope your new dr. is competent and compassionate. being a nurse, i am sure you know how to communicate with drs. the problem i often encounter is that if i am in a flare, i don't do a very good job of thinking and putting these thoughts into words that anyone can understand.....(see what i mean)

    the best advice that i can give, is to take a written list in with you of symptoms (current and intermittent), and questions...this helps me stay on course.

    take care, let us know how the dr. appt. goes.
    Phyllis

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    Clare,

    I can't add much more advice than the great ideas that have already been suggested, but I just wanted to add my encouragement here. I am 22 and was diagnosed at 13 - nearly the same age as when your symptoms started. I was one lucky enough to find understanding doctors right from the beginning.

    I know how hard it can be, especially in college, when your brain is completely fuzzy and you can't think straight - and everyone is expecting you to write this essay or study for a different test. Just forgive your brain when it won't cooperate with you, and get some rest.

    Make sure take a list of symptoms to the doctor with, including when and for how long each occurs. It will help both you and the doctor, and you won't have to worry about remembering to tell him everything.

    Good luck and let us know how it goes and if you need anything else.

    Kim

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