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  1. #1
    Join Date
    Jan 2012
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    Default searching for CORRECT diagnosis and a GOOD Rheumatologist

    I have been diagnosed with Lyme, chronic lyme, ehrlichiosis, bartonella, babesia, ehlers danlos and long story short, have alwasy felt (and been told by many Drs who are not my actual providers) that it all seems to be auto-immune. Today I finally go see a rheumatologist all ready for him to do blood tests, etc, and he tells me I dont "look like I could have possibly had an auto-immune illness for 20 years" and tells me I 'may' have fibromyalgia and thatmy joints are loose. I do not have a classic butterfly rash but I do get rashes, especially on my chest/back, and the sun does make them worse. They do not, however, raise off of the skin - more blotchy, etc. I have horrendous joint pain, some swelling, low grade fevers and multiple weird things that dont fall into a category (or fall into LOTS of categories). Looking for anyone who has been sick for a long time and received a delayed diagnosis (which they know is CORRECT) and want to know how you got it and what suggestions anyone has for me. I dont WANT to have Lupus but what I DO want is some diagnosis which is accurate and makes sense so I know how to proceed with life and what to watch for with my children (in the case something is genetic or tends to run in families). I realize auto-immune is tricky but I am so upset the dr didnt even try...
    thanks so much!!

  2. #2
    Join Date
    Mar 2011
    pinjarra, western australia
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    i understand where you are comming from.......
    i had complaints for over 30 years before, finally being diagnosed.

    firstly welcome to our cyber family.
    you are now amongst friends who understand.

    i would like to mention a couple of things i have learnt,
    they may/may not effect you.

    it is not important what they call your disorder.
    it is more important to receive the correct medication.

    many of us get more problems diagnosed later on.

    you need to have a good relationship withyour rhuemy.
    if not then find another one.
    you pay him, so he needs to work for you.

    an auto immune disorder is diagnosed by rulling out many other issues first.
    this can be a long drawn out proccess, if it is not easy to rule out some ailments.

    it is handy to keep a pain diary.
    this keeps a record of what hurts, how much and when.

    keep a copy of all of your doctor reports.
    they are your records. look after them.
    (unless you can find a doctor you trust to look after them for you).
    i use my family doctor as my primary care.
    all other doctors, MUST, send a report to him after each visit.

    please read a few of the older posts.
    they discuss many of these points.
    these posts are our personal experiences with lupus and other related issues.

  3. The Following 2 Users Say Thank You to steve.b For This Useful Post:

    Saysusie (01-25-2012), tgal (01-24-2012)

  4. #3
    Join Date
    Jan 2010
    Houston, Texas
    Thanked 1,757 Times in 1,220 Posts


    I just wanted to welcome you to the WHL family. Steve gave you some great advice. Lupus is so hard to diagnose and too few doctors understand it or even care to learn. Remember that the doctors work for you, it is not the other way around. If one doesn't listen and work with you then find one that will.

    I look forward to getting to know you better
    Last edited by tgal; 01-24-2012 at 06:11 PM.

    Success is not final, failure is not fatal: it is the courage to continue that counts.

    ~Winston Churchill~

  5. #4
    Join Date
    May 2007
    Seaside, Ca.
    Thanked 948 Times in 732 Posts


    Welcome to WHL.
    I agree with what has been said - go get another rheumy's opinion.

  6. #5
    Join Date
    Aug 2011
    Blackwood Adelaide South Australia
    Thanked 51 Times in 44 Posts


    Welcome WHL
    I started in 1993 with extreme fatigue. 1999 I lost my sight in my left eye.... Gotit back extreme fatigue etc etc.. In 2007 I lost my sight in my right eye fatigue stroke.... In this session has been going on since 2007 and I am now getting a diag of lupus, fibromyalgia, and possible ms or lupus cns or lupus vent. I am now getting the right drugs. I had a neuro since 2007but she has insisted that we don't go on the merrigoround of drug trial as many have side effects that can confuse the diag. I have had to learn to be patient and wait for my condition to mature so it can be diagnosed. It is often that people who have MS take 20 years to get the diag as often their condition doesn't meet the criteria for diag.

    Patients and live each day to the fullest is my policy. Today is 40deg cel so not much is happening as it is too hotttttttt.

    Good luck and I can say honestly this group helps you get through these times and they are wonderful and you don't feel so alone. Understanding your symptoms is so helpful for you and your dr.

    I hope this helps!
    For every dark cloud there is a silver lining!
    Diagnosed: Lupus; mesenteric panniculitis; fat nacrosis;

  7. The Following User Says Thank You to Desleywr For This Useful Post:

    Saysusie (01-25-2012)

  8. #6
    Join Date
    Nov 2001
    Victorville, California
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    Thanked 1,128 Times in 743 Posts


    I just wanted to also welcome you to our family. As you can see, this is a place filled with people who understand, who care, and who are a wealth of information and good advice. You've been given some excellent advice and I agree with everyone....Find another rheumatologist: make sure that this one is a doctor who has knowledge of auto-immune diseases (or is,at least, ready to learn), whose primary interest is in getting you to a state of health, who believes you and your symptoms, and who is willing to work with you to find a treatment regimen that provides you relief from your symptoms.
    As Steve noted, you are paying this he works for you. You could call him back and insist that he run the appropriate tests to determine if there is an auto-immune issue occurring (check our sticky on diagnosing lupus for a run down of what tests are used). Also insist that he treat the symptoms that you are currently displaying while you are waiting for the results of the tests. DO NOT let ANY doctor dismiss you! Stand up for your right to be heard, to be treated, and to be informed.
    We are all here to help you as much as we can and in any way that we can. I do wish you the very best and again, welcome.

    Peace and Blessings
    Look For The Good and Praise It!

  9. #7
    Join Date
    Feb 2008
    Thanked 1,110 Times in 630 Posts


    Quote Originally Posted by ap123 View Post
    I dont WANT to have Lupus but what I DO want is some diagnosis which is accurate and makes sense so I know how to proceed with life and what to watch for with my children (in the case something is genetic or tends to run in families).
    Hi ap123,

    Welcome to WHL. It sounds like you have your priorities exactly where they need to be. I sometimes think that finding Jimmy Hoffa or the Loch Ness Montster would be easier than finding a good Rheumatologist. There are some good ones out there, but you may have to go though a few until you find one who is competent and willing to listen. Don't be afraid to get a second, even a third opinion.

    In regards to Lupus being genetic, and something that tends to run in families, there is no definitive proof of that yet. However, the overall consensus is that yes, Lupus is genetic, and I agree. There are so many of us who have family members with Lupus, there has to be a genetic component. In my case, I have SLE, and my mother does as well.

    I hope your first rheumo appontment goes well.

    Last edited by rob; 01-25-2012 at 08:32 AM.

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