Tips for getting a proper diagnosis of an autoimmune disease

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Tips for getting a proper diagnosis of an autoimmune disease

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 help people having confusing, undiagnosed symptoms to obtain a

correct diagnosis, AARDA urges them to take these steps:

1. 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.

2. Keep a " Symptoms " list. 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. It's important, therefore, to make a list of every major symptom

you've experienced so that you can present it clearly to your doctor. 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. 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. Know in advance what questions are truly

important to you. In this way, you will not spend a lot of time discussing

things that confuse the issue of your current needs.

3. Seek referrals to good physicians. Talk to your family and friends. 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. 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. 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.

4. Inquire about the physician's and hospital's experience with autoimmune

disease. All patients want to receive the highest quality treatment, but it

is difficult to evaluate physicians and hospitals to whom they entrust their

care. It'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.

5. Obtain a thorough clinical examination. Tests vary for different

autoimmune diseases, and no single test can ascertain whether a patient has

an autoimmune disease. When facing test situations, a patient might 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; and if so, can I take medication to make me more

comfortable? How much does the procedure cost, and is it covered by my

health insurance? Who will get the test results, and what will they tell me

about my condition? The patient needs to understand that, although

diagnostic criteria define a disease, they are sometimes uncertain. Making

an autoimmune diagnosis is an exercise in the art of medicine as well as the

science.

6. Get a second, third, fourth opinion if necessary. 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. You know

you're not feeling well, so don't be intimidated. When trying to get a

correct diagnosis, it's important to be assertive.

7. Partner with your physicians to manage your disease. Once your have

settled on your treatment plan, keep in mind that your health is best

managed through a partnership--you and your medical team. 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? Establish a

dialogue, a give-and-take on a mutual respect basis.

5. 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.

Some 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. 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. 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.

Our thanks to the Society for Women's Health Research, " Definitive

Diagnosis of Autoimmune Disease Often Difficult To Nail Down, " for additions

to AARDA's list

http://www.aarda.org/infocus_article.php?ID=15

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http://www.mayoclinic.org/rochester

s Hopkins Medicine

http://www.hopkinsmedicine.org

[ ] Tips for getting a proper diagnosis of an

autoimmune disease

>

> Tips for getting a proper diagnosis of an autoimmune disease

> 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 help people having confusing, undiagnosed symptoms to obtain a

> correct diagnosis, AARDA urges them to take these steps:

>

> 1. 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.

>

> 2. Keep a " Symptoms " list. 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. It's important, therefore, to make a list of every major

symptom

> you've experienced so that you can present it clearly to your doctor.

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. 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. Know in advance what questions are truly

> important to you. In this way, you will not spend a lot of time

discussing

> things that confuse the issue of your current needs.

>

> 3. Seek referrals to good physicians. Talk to your family and friends.

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. 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. 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.

>

> 4. Inquire about the physician's and hospital's experience with

autoimmune

> disease. All patients want to receive the highest quality treatment,

but it

> is difficult to evaluate physicians and hospitals to whom they entrust

their

> care. It'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.

>

> 5. Obtain a thorough clinical examination. Tests vary for different

> autoimmune diseases, and no single test can ascertain whether a

patient has

> an autoimmune disease. When facing test situations, a patient might

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; and if so, can I take medication to make me more

> comfortable? How much does the procedure cost, and is it covered by my

> health insurance? Who will get the test results, and what will they

tell me

> about my condition? The patient needs to understand that, although

> diagnostic criteria define a disease, they are sometimes uncertain.

Making

> an autoimmune diagnosis is an exercise in the art of medicine as well

as the

> science.

>

> 6. Get a second, third, fourth opinion if necessary. 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. You

know

> you're not feeling well, so don't be intimidated. When trying to get a

> correct diagnosis, it's important to be assertive.

>

> 7. Partner with your physicians to manage your disease. Once your have

> settled on your treatment plan, keep in mind that your health is best

> managed through a partnership--you and your medical team. 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? Establish a

> dialogue, a give-and-take on a mutual respect basis.

>

> 5. 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.

> Some 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. 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. 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.

>

> Our thanks to the Society for Women's Health Research,

" Definitive

> Diagnosis of Autoimmune Disease Often Difficult To Nail Down, " for

additions

> to AARDA's list

>

> http://www.aarda.org/infocus_article.php?ID=15