Onset of Lupus

The questions should you ask your Lupus Doctor on your first visit is very important.  Because this is all so very new in the beginning, getting educated on the words commonly used in Lupus will help you to have a productive conversation with your doctor.

You can Download your Lupus Dictionary here.

We do know that the onset of Lupus can be the most challenging as you are likely to struggle with the process of being diagnosed.  And such periods of unknowns can  be frustrating, scary, and confusing.

It may take a few years to months to diagnose but usually, you’ve been having some symptoms for a very long time.  So as you get prepared for the long awaited visit to your doctor, you may want to fill out this Lupus Symptoms Questionnaire to help you to keep track of your symptoms.

Also, begin to keep an organized chart of all your labs and take them with you.

What to Expect

Keeping the questions you should ask your Lupus Doctor on your First Visit at the forefront of your mind is key to have a successful visit.

In most cases, you’ll likely begin with your gatekeeper, your primary care physician.  Based on your symptoms they will refer you to the specialist, most likely Rheumatologist who can further test, diagnose and treat you long term.Your Rheumatologist has limited time to spend with you so being as ready as possible allows for you to have a productive visit.

As you prepare for a visit, which is likely a couple of weeks to months, it’s important to keep the followin in mind.  Your Rheumatologist has limited time to spend with you so being as ready as possible allows for you to have a productive visit.

Because the symptoms of lupus can vary and mimic so many other health problems, you will need your patience while waiting for a diagnosis.  Typically, your doctor needs to rule out a number of other illnesses prior to the Lupus diagnosis and this can be tricky as the antibodies in your body may not be detectable until your symptoms progress.

Before your appointment, it’s important to ask yourself the following questions:

  • When did your symptoms begin?  ( be detailed as possible)
  • How consistent were they?
  • Notice anything that seems to trigger your symptoms?
  • Do you have family members who have lupus or other autoimmune disorders?
  • What medications and supplements do you take regularly?
  • What’s your medical history?

Be sure 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 and why?
  • If these tests are inconclusive, what other tests can be performed?
  • Are there any treatments or lifestyle changes that might help with my symptoms now?
  • What restrictions if any do I follow until the diagnosis?
  • Can I continue to work?  (Discuss the type of job you have)
  • Ask for a medical letter to excuse from school, job, or any obligations if you feel limited.
  • What else can you do to help yourself in the process?
  • Ask for any resources they recommend to research further.

This time is very difficult as there are so many questions in your mind and unless you write them down, you’ll forget and those questions will come up only after you leave the office.  Asking questions is key, be an advocate for yourself and your health.

What to expect from your Rheumatologist

Your Rheumatologist will ask you a detailed history to assess your progression.  Be as clear as possible.  This is where the symptoms checklist will come in handy for you.

Being ready to answer their questions will  leave time for all the questions you have.  Your Doctor will want to know the following:

  • Do you have sun sensitivity?
  • Do your fingers become pale, numb or uncomfortable in the cold?
  • Are you intolerant to cold?
  • Do you have problems with memory or concentration?
  • Do your symptoms limit your ability to function at school, at work or in personal relationships?
  • What other surgical or medical history do you have?
  • Are you pregnant, or do you plan to become pregnant?
  • Do you have any children?
  • Are you married?
  • Your level of fatigue, pain, and discomfort if any?

Then they will do order some labs, Lupus Serology  .

They will want you to follow up to discuss those labs and if you have 4 of 11 Lupus Diagnostic Criteria is met, then you will likely begin your life as a bonafide Lupus patient.

As you know, I’ve lived with it for over 19 years and while it’s given me challenges along the way, it’s something that we can BEAT.

Life with Lupus doesn’t have to be one of disability and limitations.  It is a manageable disease but it needs your discipline, effort, and courage to fight.  Key is in strengthening YOUR body.

Please start with this guide as an overview to begin to heal your leaky gut and follow this diet as you wait to be diagnosed as it will begin to heal you.


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