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Thread: Newly diagnosed

  1. #1
    Join Date
    May 2010
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    Smile Newly diagnosed

    [FONT="Arial"][SIZE="4"][SIZE="6"]Hi everyone! I was searching for a local forum through LupusWA and was directed to here. I have recently been diagnosed with lupus, osteoporosis and ankylosing spondylitis (hope that's how it's spelt). My rheumy seems to think I have had undiagnosed lupus for many years given my medical history. I wonder how many others have been fobbed off with Drs finding 'nothing wrong'? It actaully took an intern to review all symtoms and order specific tests, which resulted in a referral to a rheumy - perhaps i should say 2 rhuemies. The first made me feel as though I was completely wasting his time; the latter has been like a breath of fresh air. He repeated tests and phoned me with results; sent me a script for plaquinal and ordered an 'aclasta' infusion. I also commenced Tai Chi on his recommendation.

    I have yet to feel any real benefit from the plaquinal, but understand it takes some time before it 'kicks in'. Anyway I am due to see him again next Teusday, which is great since I have had a few 'scary' moments in the last few weeks... severe vertigo, fainting, whole body feeling like a rag doll etc. I wonder if it these could be due to the new light bulbs ( I beleive someone mentioned that WA has switched from old style).

    Anyway just thought I would say hello to everyone; it's soooo good knowing there are others who understand.

    Take care, have a great day

  2. #2
    Join Date
    Nov 2001
    Victorville, California
    Blog Entries
    Thanked 1,128 Times in 743 Posts


    Hello Gumnut

    Welcome to our family here at WHL. Most of us have discovered, or come to realize, that we suffered with symptoms of Lupus for many years prior to our diagnosis. I am beginning to believe that this is the norm rather than the exception (LOL).
    You are very lucky to have found a good rheumatologist (although it took a while) whose concern is finding answers and providing treatment. There are so many of us who still are searching for a doctor who will take us seriously, not tell us that it is all in our heads, and who will treat our symptoms.
    You are correct that Plaquenil is a cumulative drug and can take weeks to months before you see any significant benefits. However, for most, once it does start to work, it works quickly and is very effective.
    Please peruse our site here, read the posts and the stickys and get to know some of us. I am sure that you will make friends and that you will find that this place is filled with very kind people who genuinely care!
    We also have a very cool arcade and community forums that are fun

    Peace and Blessings
    Look For The Good and Praise It!

  3. #3
    Join Date
    May 2007
    Seaside, Ca.
    Thanked 948 Times in 732 Posts


    Hi Gumnut,
    As Saysusie told you, many of us here have been through the Dr. search and have had a few obstacles before we finally got some treatment. There are also many of us who have had an "aha" moment when we realized that some nagging symptom that we've dealt with for years must have been an early indication of our AI issues. I agree with Saysusie - I think that this is the rule, not the exception.
    Give the plaquenil some time - it may work for you. My doc added in methotrexate after a few months, and the combination seems to work for me.
    Keep in touch, and come join some of our conversations.

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