Monday, November 7, 2011

Could I have lupus..information for diagnosis

I know that one of the more trying times during our lupus journey is trying to find out what the heck is going on with our bodies.  It takes the average person something like 3-5 years to get a lupus diagnosis, I will try to find that study, I book marked all this stuff on my old computer over the years but that computer is having a fit these last few months.  Anyway, I started having symptoms around 5 or so years ago, if you back up to when I was young I had some minor medical issues, nothing big.  I would feel bad on and off during high school and college.  Then after I had my children I would get more and more symptoms.  I started paying attention 6 or so years ago when I started to be unable to do normal tasks.  I was too tired, in a lot of pain dosing myself with Motrin or Advil, hands turning blue, strange rash on my face that would come and go, the sun making me feel tired and nauseous, ulcers in my mouth and nose, rashes on my body that were strange, I had a really weird rash on the palm of my hand years ago and I refused to get it check out by a doctor.  I had headaches, this overall feeling of being ill, feeling nauseous when doing small chores, pain waking me up in my sleep, digestive issues, stomach pain, memory problems, muscle/join/bone pain.  All of these things for years would come and go until one day, I couldn't walk.  So, it did not really happen over night but it may have seemed like it to family and friends that I did not complain to.  To my husband, I think he was just relieved when I got a diagnosis and got on medication.  I had a long journey from not walking until diagnosis so long that I am not going to explain it all in this post, too boring!  I am sure many lupies share my story, we are all different yet have so much in common.  Finally, to put all the symptoms together and get one common denominator Lupus.  

Step one:  Keep a journal with all of your symptoms even symptoms you do not think are important or a part of this same problem.

Step two: Take that journal with a close relative or friend to a general practitioner or internist.  They should order some basic blood tests like TSH for thyroid also get free T3 and free T4, ANA test (some docs call this the lupus test it is not but it is an antibody test), CBC complete blood count testing your white blood cells (for infection etc.) red blood cell count (anemia), ESR rate test for inflammation, and other tests.  Usually if you have enough symptoms your doc will set up a referral to a Rheumatologist, this is a doctor who can diagnose lupus. Or depending on your symptoms, a dermatologist a doc of the skin, if you have a rash/rashes that they can biopsy and make a diagnosis.

Step three:  Do not go to just any rheumatologist make sure by word of mouth, it is a good doctor, or go to a University Hospital, especially one that has a lupus center.  Trust me a bad experience with this type of doctor is very common.  Here is some information from the Lupus Mayo Clinic web site. You may also want to do this stuff before you go to your general practitioner appointment.

What you can doBefore your appointment, you may want to write a list of answers to the following questions:
  • When did your symptoms begin? Do they come and go?
  • Does anything seem to trigger your symptoms?
  • Have your parents or siblings had lupus or other autoimmune disorders?
  • What medications and supplements do you take regularly?
You may also want to write down questions to ask your doctor, such as:
  • What are the possible causes of my symptoms or condition?
  • What tests do you recommend?
  • If these tests don't pinpoint the cause of my symptoms, what additional tests might I need?
  • Are there any treatments or lifestyle changes that might help my symptoms now?
  • Do I need to follow any restrictions while we're seeking a diagnosis?
  • Should I see a specialist?
In addition to the questions that you've prepared to ask your doctor, don't hesitate to ask questions during your appointment at any time that you don't understand something.
What to expect from your doctorYour doctor is likely to ask you a number of questions. Being ready to answer them may leave time to go over any points you want to spend more time on. Your doctor may ask:
  • Does sun exposure cause you to develop skin rashes?
  • Do your fingers become pale, numb or uncomfortable in the cold?
  • Do your symptoms include any problems with memory or concentration?
  • How much do your symptoms limit your ability to function at school, work or in personal relationships?
  • Have you been diagnosed with any other medical conditions?
  • Are you pregnant or do you plan to become pregnant?


  1. Hi Marissa.
    Thank you for your awesome blog today. so much work has gone into it. Beautifully summarized. I wish.... I had the advice, info above before starting the diagnosis roundabout. Would have reduced the stress and uncertainty of what to do next.

    Your magic for helping so many people... Trying to work out what's wrong can be a soul breaking and lonely experience. Thank you for bring to light the challenges we face and for helping others, our families, friends and medico's to understand the challenges of Lupus.... I think our family and friends suffer as much as we do, not knowing what to do or how to help.

    Hope you and the family are well and thank you so much for your help and support.. Keep warm, sending heaps of happy thoughts and hugs.... S

  2. Seek, thank you so much for your complements. I had a woman in my support group on DS (daily strength) help me so much. With her help I knew what would happen next. She was a godsend to me and I was so thankful to her, she helped so many, she has been ill and hasn't been on or sent me e-mails in months and I am worried about her. Sorry I went off on a tangent but I know how important it is to have someone who went down the same road to walk with you holding your hand. I wish I could have been there to help you but I am here for you when you need me now. Best wishes and gentle hugs.

  3. Thank you so much for posting this! I have been to the university level and a Rheumy, they deny lupus simply upon labs. My GP diagnosed and treats me for it. He wants me to go to Mayo in Rochester, MN for proper treatment and I am working on getting that done as I write. That will be a difficult place for me to go since its the last place my father was alive:(

    I have 9 of the 11 symptoms and all negative labs. There is a minimum of 3% of patients with lupus that do not show in lab work alone, some studies show as high as 20%...there is a learning curve and with both of my parents having autoimmune diseases, they should have looked at that as another sign.

  4. Kristy, I am so sorry about your journey being so hard. Trust me I understand and most of us lupies have been through the same issues. It can take a LONG time for blood work to become positive if ever. Also certain medications can turn blood work negative AND people with lupus have blood work that can change HOURLY!!! ANA is NOT a lupus test there are many people that have a positive ANA that will NEVER develop lupus, hence the criteria for diagnosis. I hope with all the new research a good tests comes out. I am happy that you have a good general prac to treat you! I would recommend the University of Pittsburgh's Lupus Center of Excellence, they are wonderful there. I believe that if you have something autoimmune they will find it! I also have a ton of autoimmune disease in my family. There is sero negative lupus. I wish you luck and I am sorry about your father, that must be so hard for you. Keep me posted on your journey. Best wishes and gentle hugs.

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