So, you think you may have lupus? What should you do now?
Swollen, or painful joints
Do you get a rash when
you go in the sun?
Do you get mouth ulcers?
Do your fingers/toes go
blue, white or red in the cold?
Have you ever had a low
red blood cell count (anaemia), low white cell count, or low platelet
Do you get extreme fatigue,
even when you've had a good night's sleep?
Have you ever had pleurisy
(pain in the chest on breathing in)?
Do you get a red rash on
your face, across your cheeks and nose, in the shape of a butterfly?
If you've answered yes to three or more of the above questions,
then there is a chance that you may have lupus.
Look at your symptoms, to get a diagnosis of lupus, patients usually
must have at least four of the following-
1. Characteristic rash across the cheek
2. Discoid lesion rash
4. Oral ulcers
6. Inflammation of membranes in the lungs, the heart, or the abdomen
7. Evidence of kidney disease
8. Evidence of severe neurologic disease
9. Blood disorders, including low red and white blood cell and platelet
10. Immunologic abnormalities
11. Positive antinuclear antibody (ANA)
Get yourself a good doctor who knows a lot about lupus. Contact
your national lupus charity (e.g. Lupus Foundation of America, Lupus
UK) who should be able to recommend a good lupus doctor.
If you already have a doctor who isn't very good or isn't taking
your symptoms seriously, ask to be referred for a second opnion.
Keep on going and believe in yourself. Many lupus patients often
say they feel like hypochondriacs when visiting their doctor because
of all the minor symptoms that they want to report. It can be a
long, hard road to get a diagnosis & it's easy to want to give
up. Sometimes, even their families begin to question whether there
is anything really wrong. The important thing to remember is that
you know that there is something wrong, so you must keep going until
you get an answer.
Make a note of all your symptoms, even the ones that you think
are not connected. Take this list with you when you see your doctor.
Also make a list of any questions you have.
Learn about lupus, read books, search the internet & be informed
about the symptoms, treatments & tests. This will help you to
communicate with & better understand your doctor & what
Autoimmune diseases tend to run in families, although they can
change in their expression from generation to generation. Your grandmother
may have had lupus, your mother Graves' disease, or your sister
diabetes. Look back at your family history, and tell your doctor
if anyone had an autoimmune disease, it may help with the diagnosis.
Talk to others. If you are unable to discuss things with your family
or friends, make contact with other lupus sufferers, either through
a lupus charity, support group or the internet. People often tell
me what a relief it is to talk to others who know what they are
going through. Visit our message
boards for support and advice.
Remember - never give up, keep going until you get a diagnosis!