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Thread: Introduction

  1. #1
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    Default Introduction

    This situation is very new to me.
    It began last winter when I started having symptoms of what I now know is Raynaud's Phenomonon. At 41, I just thought I was having circulation issues. When it continued as the weather cooled down here in the fall and sporadically in the summer(cruising past the frozen food section in the grocery store), I went to my primary doctor.
    He diagnosed me with Raynaud's and did some blood work. When it came back with an ANA of 1:1280, and low white blood cell of 3.8, he sent me to a Rheumatologist.

    She went over my symptoms: Raynaud's, acute fatigue, acute joint pain, acute dull headaches, rash on my hand and ears, but goes away. No facial rash or mouth sores. No capillary issues in my nail beds. All very acute, lasting for short periods of time, with the only chronic thing being that I have symptoms all the time, they just are short in duration.
    She did more extensive blood work--it came back positive RNP antibody.

    She said all of this is not enough to diagnose lupus, but something is wrong and it may be first stages. I'll she her again in January.

    My gut tells me I have it. I know my body and something is not right. I guess I was just hoping she would confirm it.
    So, I'm focusing on taking care of myself, resting when I need to and not over doing anything. My doctor gave me Nifediac(high blood pressure meds) to help lessen the Raynaud's episodes. It seems to be helping, but the cold Illinois winters will be the real test.

    Thanks for allowing me to talk. Peace.



  2. #2
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    Hi Deanna,
    Welcome to the site. There are a lot of good folks that come in here. I hope that you get clear answers in January. Please keep posting.

    Hugs,
    Kathy
    Lupus for many years. Like most of my life. Sjogrens that started at 35 and Scoliosis, Spinal Stenosis, Degenerative Disc Disease, Osteo-Arthritis of the spine, Ankylosing Spondilitis, Periferal Neuropathy, mild CP and now just recently diagnosed with PA. I had a disc replaced in December of 2007.

    Medications:
    Plaquenil, Sulindac, Imuran, Celiac diet, Tramadol and B12 shot once a month.

  3. #3
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    Default

    Hello DeannaHawk and welcome

    Lupus diagnosis can take a while to nail down. My mother had lupus, my sister has lupus, and I'm in limbo with still no diagnosis.

    I have had many of the symptoms since I was 19 but back then I wasn't tested for lupus.

    In 2006 I had a possitive ANA test which my doctor for somereason didn't see the report.

    Two years ago things started going really badly for me. I then had a boarderline ANA test and two negative.

    I'm 48 yrs old and frustrated with the lack of a good clear answer.

    There are alot of wonderful people on this site that have answered may questions for me.

    Right now I'm getting along pretty well. I'm on medication that is helping alot. Should things turn ugly again then hopefully I will be able to get clearer answers...but for now I'm just being "watched".

    I too get rashes on my hands. Very uncomfortable and down right painful when it's in the final drying up stage with the cracking chapped bleeding OUCH.

    Lupus shows it's ugly little face in many different ways. No two people desplay exactly the same way, but we all have our turn with the various symptoms.

    Feel free to ask any questions you may have and to vent when needed. We all get frustrated and scared and take turns supporting each other through the rough part.

    There is a lot of humor and warmth on this site. Glad you found us.
    Oh look ... a cookie

  4. #4
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    Default Thank you...

    for the warm welcome and supportive words.

    I'll visit often, as I just may need it.

    Peace.
    Deanna
    "You must be the change you wish to see in the world." --Ghandi

  5. #5
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    Hi Deanna...

    Welcoming you with big warm hugs..

    Many here have not been diagnose, and are being treated for their symptoms as if they have received a hard diagnose...

    Keeping a journal will help with a diagnose...no symptoms is too small.

    It is emotional, frustrating, wreaking havoc on us searching for answers, diagnose and when you find yourself feeling like that, do share, we are here for everyone, with Lupus diagnose, or not..or another autoimmune disease. They are all hard on the spirit...

    Keep looking for your wellness..be well.
    Hugs.
    Love,
    Oluwa
    I have Lupus. So *^#@! what.

  6. #6
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    Saysusie is offline Super Moderator Super ModeratorEmperor of the Universe
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    Hi Deeana;
    You've already been given good advice and warm welcomes. Not much that I can add other than to say "welcome" also. Often, doctors will wait for symptoms to develop before they will make a definitive diagnosis. You may, until then, be told that you have mixed connective tissue disorder or undifferentiated connective tissue disorder. Both of these diagnoses basically means that your symptoms have not evolved into any one specific auto-immune disorder.
    As Oluwa mentioned, many others here do not have a diagnosis yet. However, it is your right to ask that your symptoms be treated while awaiting a diagnosis.
    I wish you the best of luck
    Peace and Blessings
    Saysusie
    Look For The Good and Praise It!

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