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Thread: Fustrated

  1. #1
    Join Date
    Dec 2009
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    Default Fustrated

    I have not been dx w/lupus but have been dx with a connective tissue disease 1 1/2 yr ago. Since then I have what my IM States are flares. I just recently took another ANA test and it came back as postivie my titers were 1;320 with homogenous/nuclear pattern which that changed from the previous test in april. In Ocotober I was sick with a bad cold, fatigue and 2wk after my cold i was having severe bone pain in my knees, fingers,wrist , ankles, elbows , sholders so I was feeling miserable then I went back to the dr having sharp shooting pain on left lower back pain it kind of felt like a kidney stone so they sent me to get a ct yesterday and the dr told me that my kidneys didnt show a stone but i had a suspicious spot on low spine that could possibley be fatty tissue or hemangioma but since i am still feeling pain he odered mri.
    he stated it could be the connective tissue diseas. he stated that i get flares when i get a cold. my esr and cp factor were neg which means there was no inflamation so he gave another lab script and stated for me to go only when i feel worse then what i feel right now. has any one else felt this way i just dont know what else to do. today i am feeling better just the pain is still there and i am always cold. should i see a rhuemy so they can run more test. i need some advice

  2. #2
    Join Date
    Dec 2008
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    hi dvpcortez,

    first, let me welcome you to our family. This is where you can find support and answers to questions. Someone is always around, and ready to be here for you.

    yes, your description sounds very familiar. It seems that anything can cause a flare. I go to the dentist, and go into a flare (sometimes). It can get so frustrating, because it makes me frightened to try anything.

    I went through several months with severe flank pain. My dr. sent me to a nephrologist who had tests run. My kidneys are ok, and he thinks my lupus was attacking the soft tissue around the kidney. Sounds like a crop, but from my experience over the past many years with lupus, it is probably accurate.

    Yes, you need to see a rheumatologist.....Some of us have fortunately found really good ones, and others still struggle looking for that "good dr." Do not hesitate to seek another dr. if you don't feel like they are giving you the respect that you deserve.

    good luck, keep us posted, and please ask any questions.....we have some incredibly knowledgeable members, and we can help you.

    share a smile today

  3. #3
    Join Date
    Nov 2001
    Victorville, California
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    Hi Dvpcortez;
    As Mountaindreamer said, your symptoms do sound familiar. It is quite possible that you might be dealing with several overlapping issues, but no one of them has really developed enough to make a definite diagnosis. Unfortunately, this happens quite often. For some, one or two diseases do develop fully and they are able to get a diagnosis. For others, however, they remain where you are and never get a diagnosis beyond connective tissue disease, or mixed connective tissue disease, or undifferentiated connective tissue disease.
    Even with these nonspecific diagnosis, a good rheumatologist will treat your symptoms in order for you to be able to manage your lifestyle. So, again reiterating Mountaindreamer, it is important that you find a rheumatologist who is competent, who believes you, and who has your best interests in mind.
    In the meantime, we are here to help you as much as we can and to let you know that you are not alone! Welcome to our family!

    Peace and Blessings
    Look For The Good and Praise It!

  4. #4
    Join Date
    Apr 2009
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    Hi dvpcortez... I would just like to echo the importance of finding a good doctor that can help you.

    I was first dxed with UCTD, changed to MCTD, and then another rheumy suspected HAE, and she sent me to a hematologist who found a lot of other stuff. My pcp is convinced I have lupus and SS. We're just waiting on a rheumy to catch up with her. I will be seeing a new rheumy, my 4th try, next month...and no longer hope for a dx really, just treatment and better bedside manner.

    My pcp explained it can be a very long wait for doctors to dx a patient when something autoimmune is going on. However, when I have returned to see her after having appts with a new rheumy, no dx, and they didn't really do anything but run more labs, (finding other things that confirm her findings), she even gets frustrated. She knows how it is though...AI problems run in her family.

    It could be a long ride waiting for a dx, but you do need a kind hearted doctor that cares about the quality of your life.

  5. #5
    Join Date
    May 2007
    Seaside, Ca.
    Thanked 948 Times in 732 Posts


    Welcome to WHL!
    Like the others who have answered, your symptoms sound very familiar to me, too. I was also dx'd with Mixed Connective Tissue Disease, after I dumped a rheumy who wouldn't treat anything unless one definitive disease showed up on the blood test. Once I found one who would treat MCTD, I've been doing better.
    It sounds like your doc is being helpful, but a rheumy might be able to contribute some more info for you.
    Keep coming back and updating us.
    Good luck,

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