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Thread: Hi I am new!

  1. #1
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    Default Hi I am new!

    Hi all, I am new here and just looking around to see what support is out there for people in this situation.

    I have not been diagnosed with Lupus but the doc is treating it as such. He has put a diagnoses of UCTD and Fibromyalgia on me. I'm also a type I diabetic and have been since age 12.

    I started having joint pain in January and alot of people thought it was b/c I have a new baby. He was born in October. He is a big boy (11.4 lbs at birth) so yeah it makes sense that my body would hurt a bit. But this pain was wierd, very sensitive in my joints. I started bruising easy and just had a lot of wierd feelings so I went to the NP for my family doc and they did a CBC and all that jazz. I'm a nursing student and I knew something wasn't right.

    My ANA came back positive so she said it could be a connective tissue disease or lupus but it was not rheumatoid arthritis. So they sent me to a rheum. who I'm not sure if he is all there or not some day! I have had tons of blood work done and for now he is going with it being UCTD and Fibromyalgia. He just rx'd hydrocloraquin for me but I'm hesitant to take it b/c of the possible eye issues and being a diabetic I am already at risk for eye issues. I think I am going to call my eye doc to get a second opinion on whether it is ok.

    So not much to say, just wondering how many ppl also started out with such a vague diagnosis?

    BTW, I am Amy, 29 years old, married to David for 8.5 years and I have a son who was born in October and he is the love of my life! Also I am a nursing student with less than a year left til I can take my RN exam.

  2. #2
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    Hi,
    I just joined this site and read your post. It sounds eerily familiar. I have had this thing for 16 years. I started to feel the way you do right after my daughter was born. I did have a hard time finding out what was wrong with me. It turns out I have a mixed connective tissue disease, the doctor sometimes calls it CREST syndrome. It's along the lines of lupus and when people ask its too complicated to explain so I just say I have lupus. Maybe your md can check for connective tissue disease.
    Hope it helps. Hang it, it gets better.
    Barb

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    Thanks Barb, great to meet you! Yes they dx me with Undifferentiated connective tissue disease. And mne started after pregnancy too. My rheum. said that pregnancy can sometimes kick it into action.

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    First of all, welcome to our family. We're here whenever you need to vent, cry, ask questions, share experiences, and even laugh. You're not alone.

    I'm very new at this, just been diagnosed with SLE end of March-early April 2006. I had many many tests done on me such as a skin biopsy, kidney biopsy, lots of bloodwork and urine tests. All the tests came back positive for SLE. It took about a month for the diagnosis. But in the beginning, during the month of March, before I was diagnosed with SLE, I was very sick for 2-3 weeks with high fevers, very swollen/achey lymph nodes, fatigue, weightloss, weakness, some hairloss, joint pains, and swollen fingers. I visited my family doctor during that time and said I may have a bad FLU. So she prescribed me with an antibiotic and told me to take tylenol for the fever. That antibiotic didnt help, so she prescribed me with a different antiobiotic, and THAT didnt work. She was baffled. :? :?: Then a rash appeared across my face and spread to the back of my ears and upperback. The rash wasn't itchy, but it appeared out of nowhere. So I went to a dermatologist that quickly recognized a symptom of lupus--the butterfly rash. To make sure, she did a skin biopsy. Tests came back positive for SLE. I immediately found a rheumatologist and a nephrologist. After more tests, it was definitely SLE. :idea: So that rash helped with my diagnosis, without it, I probably would still be mysteriously sick to this day... :?
    "I've learned that when bad times come, you can let them make you bitter or use them to make you better."

  5. #5
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    Default I STARTED OUT WITH A UCTD DIAGNOSIS

    which I finally got from a rheumatologist after a couple of years of being told by my family doctor that my fatigue, pain, vomiting, etc. was due to stress, hormones, anemia, etc. etc. I was in a very high stress job at the time, and already knew I had endometriosis, so I assumed that was the problem. It wasn't until I had gallbladder surgery that they suspected a CTD - my hands turning bright purple in the cold of the OR was kind of a tip-off, and the surgeon taking out my gallbladder also found all kinds of adhesions and scarring of my internal organs. So he referred me to a rheumie. My first ANA was sky-high - 10,240, sed rate was also seriously high, but I also had the antibodies for scleroderma and symptoms of CREST syndrome.

    Doctor listed the diagnosis as UCTD because he wasn't sure which disease I actually had, but when I developed CNS symptoms he changed it to CNS lupus and lupus nephritis. My final diagnosis ended up being SLE with scleroderma overlap and CREST syndrome and Sjogrens. So far, the scleroderma has done some damage to my heart muscles and valves but very little skin involved yet.

    Many doctors will give you a UCTD diagnosis even when they strongly suspect lupus, because a diagnosis of lupus or scleroderma seriously affects your ability to get insurance, and they don't want to label you prematurely. If your doctor is willing to treat your symptoms and you feel comfortable with his recommendations, you may not want to push for a more specific diagnosis right now. Hard as it sometimes is to get a diagnosis, it's even harder to get rid of one.

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    cherokee:

    I take hydroxychlorquine - Plaquenil - twice a day, and I was worried about my eyes too. Make sure before you start taking it that you get a baseline slit lamp eye exam. Then talk to your doctor about your concerns and that you would like to have your eyes checked every six months instead of once a year. See if he/she will give you a referral every six months so that your insurance will cover it in this special situation.

    I know its a lot to take in right now, but try to stay focused on the positive stuff, like that beautiful new baby, and know that you can talk to all of us anytime!

    good luck.

    - Peach

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    Thank you for the warm welcome everyone. A lot of things are starting to make sense to me now. I figure since i already have Type I diabetes which is an autoimmune issue (my body attacked my pancreas) that I am probably more susceptible to other immune diseases like lupus.

    Soooooo thanks for the information! I'm going to call my doctor and set up an eye exam before going with this drug. Just to be safe!

  8. #8
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    Hi Cherokee,

    I love your name!! As you can see there are wonderful people that make up this lupus family. Our leaders are exceptionally warming and welcoming as well. I'm sure they'll be popping in to say hello as well.

    Feel free to share, ask, cry, and vent - that's what we're all here for.

    Hope you're having a good day.

    Much love,
    Browneyedgirl
    "I believe that friends are quiet angels who lift us to our feet when our wings have trouble remembering how to fly." - unknown

  9. #9
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    You will find alot of good people here. This site has alot of infomation that has been really helpful to me and I know it will for you also.
    Your friend in Texas, Jessica

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