Tips for getting a proper diagnosis of an autoimmune disease

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[ ] 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

[Guest guest]

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