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Thread: My Story

  1. #1
    Join Date
    Dec 2012
    Thanked 2 Times in 2 Posts

    Smile My Story

    Hello WHL!
    This is my first thread, although I have read so many of your questions and comments over the past couple of months.
    They have helped me on my journey, so I thought I'd share my story as well.

    Beware, I like to talk. Ha

    I am 24 years old and live in a small town in Arkansas.
    I work full time as a Registered Nurse in a critical care unit, and I love my job. Taking care of people is what I love.
    Also, I am just weeks from my wedding! So excited.

    Anywho! I (along with so many of you, unfortunately) have had unexplained symptoms for at least 10 years.. More like 14 years if my memory serves me right.
    I counted the number of specialists I have seen over the years.... 17.
    This includes urologists, neurologists, cardiologists, electrophysiologists, gastroenterologists, along with others.
    And the consensus of most of them: "It's all in your head." "You can't possibly have that much wrong with you." "You're a hypochondriac."

    Very, very frustrating.

    I am now in the process of being "officially" diagnosed with SLE.

    I will break my symptoms down by category so maybe it'll be easier to read.

    Fatigue and Joint pain:
    As long as I can remember, I have gone months and months feeling absolutely fine, then I wake up one day and can barely move.
    Extreme exhaustion. Usually lasts a few days, to a few weeks.
    Also, as a teenager, I would complain a lot of joint pain. It was usually my wrists and my knees. They would sometimes become swollen and red and ache.
    The doctors explanation: "You're just having growing pains." or "You must have injured it somehow without knowing it."
    In more recent years, I have more and more pain in my hips, elbows, shoulders, and ankles, fingers, and toes. My hips are by far the most painful.

    Beginning around the age of 19, I started having very bad chest pains. It is very sharp and I get short of breath doing every day activities (walking to the mailbox and back, taking a shower, etc.)
    I have a Patent Foramen Ovale, found by doing an echocardiogram with a bubble test.
    I have SVT in which my heart rate jumps up to 260.. It would do this multiple times a day, until I finally found a great doctor who was able to do a cardiac ablation in September and I haven't had an episode since.
    I also go in and out of atrial fibrillation/atrial flutter. Doesn't cause me toooo much problem. Just usually drops my blood pressure and I have to lie down immediately or I will pass out.
    I also have neurocardiogenic syncope (Where if I stand up, the blood sometimes pools into my legs and my blood pressure drops, usually around 50/35)
    For anyone interested, I have an implanted cardiac monitor that allows my doctor to see my heart at any moment I am feeling symptoms. I have had it for a year and a half, and it is good for about 3 years total.
    It has been very beneficial to me, personally.

    I get pleurisy from time to time. I can easily distinguish this from the chest pain because it hurts on inspiration of my breathing.

    My platelet count is always borderline low, but my MPV (Mean Platelet Volume) is always quite low.
    WBC is usually 4,000-6,000.
    There are times where I bruise very easily, but for the most part, I haven't had much problem in this area.

    I have noticed over the past few years, my circulation is getting poorer. I can't stand to be in the cold, or my legs hurt and partially go numb. My hands do the same, but not as bad.
    I don't have the classic red, white, and blue of Raynaud's, though. Just red and white.

    I have had several small bowel obstructions, but I also have IBS. I don't know if this is common with SLE or not, but something I have to deal with all the time.
    There are also times where I become very nauseous for no reason it seems.
    And I get severe, doubled-over abdominal pain. Usually in my left lower quadrant.
    I also have a lot of GERD and gastritis that comes and goes.

    For several years, I have suffered from flank pain (usually on my right side)
    For at least 10 years, I'd say 75% of my urinalysis' come back positive for large amounts of blood and/or protein.
    Also, there are weeks at a time where I go to bed and wake up every hour or so having to urinate. And urinate A LOT.
    This is what scares me the most about SLE, personally.

    I do get mouth ulcers, and occasionally an ulcer on the inside of my nasal passage.

    Skin: I have a butterfly rash, as well as a red, patchy rash that appears when exposed to sunlight or a tanning bed. This only started a few months ago.

    Neurology: I get very, very bad headaches. They sometimes last days at a time.

    So, starting in October, I began having this red, patchy rash over my face. And my face only. I also began having angioedema on my face and neck. I thought I was having an allergic reaction, so I went to an allergy specialist....
    Everything came back negative. He looked at me and said, "This isn't an allergy." My heart began to race.. What in the world could it be then!? He said, "Lupus." I tried to rack my brain around what Lupus was exactly. I remember learning about it in school, but since graduating with my nursing degree 3 years ago, I have never had a Lupus patient. So, as he walked out, I began googling. Ha. Wrong move. Of course, I read the worst possible things.

    Anyways, he did a sed rate and and ANA.
    The results came back as follows:
    Sed rate of 7... Not bad at all.
    ANA was 1:1280 with homogeneous pattern.... Not so good. Ha.

    That's when he sent me to a rheumatologist. She then did an assessment and ordered a ton of blood work, and sent me specifically to Memphis, TN to have biopsies of my face.
    The results of the biopsy: Both came back positive for Acute Lupus Erythematosus..

    This is where I am at in the process. I go back to the rheumatologist in a couple of weeks to discuss a plan of treatment.
    Also, a neurologist told me about 5 years ago that I had autonomic dysfuction, most likely secondary to an autoimmune disorder... Yet that's as far as he got with it.
    The rheumatologist told me I have multiple medical problems, not just Lupus. So I'm hoping to find all the pieces of the puzzle soon.

    Here are other lab results, for those interested:
    Anti SM and RNP - Negative
    ANA is still 1:1280 with homogeneous pattern
    SCL70 - Negative
    SSA/SSB - Negative
    Rheumatoid Factor - Normal

    I have searched to see if anyone else has ever had a biopsy to confirm the diagnosis of their rashes, and haven't came up with much at all. Is this not a common thing? Just curious.
    Also, do any of you have problems with your autonomic nervous system, too?
    What about heart arrhythmias?

    I continue to learn more about these disease day by day, and I know it affects us all differently.
    I hate that anyone would have to go through this, but it is nice to know you're not the only one.

    I applaud the people who have given us a place to come and speak to one another.
    Hope to get to know you all better.
    I am always open to suggestions, advice, and questions.


  2. The Following User Says Thank You to NurseSusan For This Useful Post:

    shella (07-27-2015)

  3. #2
    Join Date
    Mar 2011
    pinjarra, western australia
    Blog Entries
    Thanked 1,844 Times in 1,279 Posts


    hi susan,

    i cannot add much for you at the moment......
    but wanted to say hi and welcome.

  4. #3
    Join Date
    Mar 2009
    Dallas, Tx
    Thanked 418 Times in 343 Posts


    Hi Susan,

    Welcome to WHL.
    It looks, like you have alot on your plate, but I am sure, the rheumy will figure it out.
    Most of us have many or all of your symptoms, but it sometimes ( most of the time) it takes a long time, until you get a diagnosis.
    You can deff. have more than one autoimmune disease, because they go hand, in hand.
    Myself, I was dx with Lupus SLE, RA and Sjogrens.
    Once you are on the right meds, things get somewhat better.

    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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