DIAGNOSING
AUTOIMMUNE DISEASES
(Adapted from an article in the AARDA
InFocus, Vol.10,
No. 2, June 2002)
For people with
autoimmune diseases,
getting a proper diagnosis can be one of the most difficult challenges
they face.
The American Autoimmune Related
Diseases Association (AARDA) conducted a survey of autoimmune disease
patients and found that the majority of those eventually diagnosed with
serious autoimmune diseases had significant problems in getting a
correct diagnosis.
- Many were
incorrectly diagnosed with a variety of conditions that have no
specific blood test to confirm the diagnosis.
- Many were told
that their symptoms were in their heads or that they were under too
much stress
Further, the survey revealed that 45
percent of autoimmune disease patients had been labeled hypochondriacs
in the earliest stages of their illnesses.
To obtain a correct diagnosis for
people having confusing, undiagnosed symptoms, AARDA urges them to take
these steps:
- Do your own
family medical history.
- Take an inventory
of your family's health problems, expanding your research beyond your
immediate family to cousins, aunts, uncles, and other relatives.
- Since current
research points to a genetic component in most autoimmune diseases, you
should know the health histories of your first degree relatives,
including grandparents and cousins, if possible.
- Once you know
your family history, you can communicate it effectively to your doctor
who can then assess the possibilities with a degree of accuracy and
order appropriate tests.
- It's important to
make a list of every major symptom you've experienced so that you can
present it clearly to your doctor.
- People with autoimmune
diseases
often suffer from a number of symptoms that, on the surface, seem
unrelated. In addition, they may have suffered from other seemingly
unrelated symptoms throughout their lives.
- List the symptoms
in the order of concern to you. When the nurse calls you into the exam
room, review your list--or, better yet (in most cases), give the list
to the nurse to record in your chart.
- In this way, you
will not spend a lot of time discussing things that confuse the issue
of your current needs. Know in advance what questions are.
- When you see your
doctor, be sure to mention at the very start of your visit the symptom
that bothers you the most. This is often the problem to which your
doctor will pay the most attention.
- Unless your
problem list is lengthy, or the doctor notes a serious problem which
takes higher priority, she/he usually will be able to answer all your
questions. truly important to you.<>
- All
patients want
to receive the highest quality treatment, but it is difficult to
evaluate physicians and hospitals to whom they entrust their care.
- Seek referrals to
good physicians.
- If you're having
trouble getting a proper diagnosis, see whether someone you know and
trust can recommend an internist in your community who is also a good
diagnostician. It's always good to ask around.
- Talk to your
family and friends.
- Check your
community resources--attend health agency meetings and community health
meetings sponsored by local hospitals, and talk with the health care
professionals at those meetings and elsewhere.
- Because there is
no medical specialty of "autoimmunologist," it can be difficult to
determine the type of doctor you may need to see. You will
probably need to see a number of specialists.
- One thought is to
identify the medical specialist that deals with your major symptom and
then check with a major medical center for a referral to that specialty
department.
- A number of
agencies dealing specifically with autoimmune diseases maintain
referral lists.
- Inquire about the
physician's and hospital's experience with autoimmune disease. t's a good idea
to ask the physician whether he or she takes care of patients with the
specific disease that has been diagnosed.
- Generally
speaking, the larger number of patients with a particular autoimmune
disease treated by the physician, the better. Also, a specialist should
be adept at managing the therapies used to treat a particular
autoimmune disease.
- Obtain a thorough
clinical examination.
- Tests vary for
different autoimmune diseases, and only rarely can a single test can
ascertain whether a patient has a specific autoimmune disease.
- When facing test
situations, a patient should ask:
- What is the
purpose of this test?
- Are there any
alternatives?
- Is this an
outpatient or inpatient procedure.?
- Can I anticipate
any pain, discomfort, or claustrophobia?
- Can
I take
medication to make me more comfortable?
- How much does the
procedure cost, and is it covered by my health insurance?
- Will I get a copy
of the test results, and what will a physician’s interpretation tell me
about my condition?
- Making
an autoimmune diagnosis is an exercise
in the art of medicine as well as the science.The patient needs
to understand that, although diagnostic criteria define a disease, they
are sometimes uncertain.
- Get a second,
third, fourth opinion if necessary.
- When trying to
get a correct diagnosis, it's important to be assertive. You know when
you're not feeling well, so don't be intimidated.
- Sort out your
options for treatment at the beginning before symptoms worsen, but
check first to see whether your insurance will pay for a consultation.
- Since
autoimmunity has just begun to be recognized as the underlying cause of
some 100 known autoimmune diseases and because symptoms can be vague
and not visibly apparent, many doctors don't think to test for
autoimmune diseases initially.
- If a doctor
doesn't take your symptoms seriously, dismisses them as stress related
(when you do not feel as though you are under any excess stress), or
refers you to a psychologist, find another doctor.
- Partner with your physicians to
manage your disease.
- Don't be afraid to ask
questions:
- What are the
treatment options?
- What are the
advantages and disadvantages of each?
- How long will the
treatment last?
- Your health is best managed
through a
partnership--you and your medical team.
- Establish a
dialogue, a give-and-take on a mutual respect basis.
- Once your have
settled on your treatment plan, don’t hesitate to ask if it seems
ineffective.
- Learn to deal
early on with the long-term effect of autoimmune disease.
- The complicated
process of obtaining a diagnosis and developing an appropriate plan of
treatment may mean that you will be subjected to a great deal of
uncertainty.
- Accept that
patients with autoimmune disease and their families very likely will
need to adapt to a somewhat different life style.
- Many people are
using the Internet as a way to communicate their symptoms with others.
Doing so can help advance your own personal research, may provide clues
to what disease you are experiencing, and can be a means of uncovering
good resources for finding a good diagnostician.
- If you don't have
your own computer, many libraries provide access to the Internet
through their computers. Ask your librarian whether this is available
to you, and don't hesitate to ask for help if getting "on-line" isn't
clear to you.
- Also, contact
your hospital community education department, a nurse at the health
department, or a nonprofit disease-specific organization to find out
about support groups.
- Sharing your
situation with others can have enormous benefit, including eliciting
the kind of emotional support that is so necessary for people with
undiagnosed autoimmune diseases.
Thanks to The
AARDA and the Society
for Women's Health Research, "Definitive Diagnosis of Autoimmune
Disease Often Difficult To Nail Down," for additions to AARDA's list