Autoimmune Disease - Searching for a Diagnosis
What's Wrong With Me?
The Autoimmune Disease Diagnosis
Have you been doctoring for a laundry list of troubling (sometimes disabling) symptoms and still do not have a diagnosis?
You are not alone.
Patients seeking answers to what seems like widely disconnected symptoms are on the rise.
The "blanket" diagnosis of "autoimmune disease" is being made more often in this century than ever before. To actually put a name to the disease is the real task.
For some patients, it just isn't happening fast enough.
People With Autoimmune Diseases
Getting That Diagnosis
Autoimmune diseases (AI) are among the most difficult to diagnose because many AI's mimic each other.
What seems like Lyme Disease could be Multiple Sclerosis, Mononucleosis, Chronic Fatigue Syndrome, or Fibromyalgia.
What seems like Chronic Fatigue Syndrome may turn out to be Lupus, Hepatitis, Thyroid Disease, Fibromyalgia, Rheumatoid Arthritis, or deep Sinus problems.
The road to getting a diagnosis is long and sometimes very bumpy as patients go through the testing phase, trying to find a common denominator - if there is one.
You need to start somewhere, and a complete physical examination is key - preferably with a neurologist who specializes in autoimmune diseases.
Where To Start - The Testing Begins
The very first thing any good doctor does is order laboratory tests - which includes blood work and urinalysis. The results - called a "baseline" - are used to compare with your past and future tests, and will give the doctor a good picture of whether your disease is progressing or is in remission.
Medical insurance will usually pay for these tests.
There are over 80 autoimmune diseases, some of which mimic each other so pinpointing a diagnosis to one disease can be very difficult. An example: Lyme Disease mimic Multiple Sclerosis. As of this writing, there is no one blood test to test for all autoimmune diseases. However, when test results are put together with other tests, certain AI's can be ruled out.
Vitamin D-3 Blood Test
Importance of Vitamin D Testing
Included in the laboratory blood tests should be a specific test for Vitamin D and Vitamin D-3.
Many autoimmune diseases have the same underlying marker - a deficiency in Vitamin D.
In my opinion, all patients with any autoimmune disorder should be tested for this deficiency and if founded,they should immediately start on a daily Vitamin D supplement.
It is not unheard of to supplement with an injection of 50,000 IU Vitamin D-3 several times per week, however most patients opt to take it orally every day. The dose should be monitored by a physician and adjusted when he gets the results of your monthly blood tests to make sure you aren't toxic and to make sure the vitamin is doing its job. For extreme cases, your doctor may order both a weekly injection and daily oral supplement.
The correct test to ask for (if your physician does not order it) is called 25 (OH)D, also referred to as 25-hydroxyvitamin D.
The result of the first Vitamin D-3 test is your baseline and it is very important - more important than any other blood test on the lab list.
Testing is key.
Some doctors like to wait six months or longer before they order follow up blood tests to check levels of Vitamin D. For the patient who wonders if it is working at all, the waiting can be agonizing. You wouldn't take daily chemotherapy for months and months without having periodic testing to see if it is doing any good, so the same applies to Vitamin D therapy. If your physician doesn't monitor your Vitamin D-3 therapy with monthly blood work - at the very least - then ask for it.
If your doctor doesn't agree to monthly (or periodic) testing, you should make it clear that you need to know if the dose is working, and that you are not content to wait for months to be retested. It's your body, don't be afraid to make suggestions regarding your care.
Imaging Studies Are A Must
An MRI (magnetic resonance imaging) is usually ordered around the same time as blood work, if not shortly thereafter.
In the case of Multiple Sclerosis and a few other autoimmune diseases, a brain MRI is most commonly ordered first, followed up by three separate MRI's: thoracic, cervical and lumbar. The physician is looking for lesions that would indicate sclerosis.
Always ask for copies of your test results - laboratory, evoked potential, skin tests, sleep studies, and imaging and radiology tests. When your MRI is over, a DVD of your test is available right away and is usually provided free of charge. If it isn't offered, you may have to ask for it.
Worried about claustrophobia in an MRI machine? Although headphones with music are available, you can ask to have your studies done at an "open" MRI facility.
If there are none available in your area, perhaps a light pre-medication might be better. Assuming you have someone to drive you home, you can ask your doctor if he will order a low dose of Ativan (for example) so that you are relaxed while the test is in progress. This also helps keep your limbs from twitching when in a confined space.
Keep Copies Of Your Health Records Forever
Your Record Keeping
In the United States, legislation was passed for doctors to stop keeping paper records. All notes and test results are uploaded online - usually connected to one hospital network - and are password protected. However, if you choose to go to another doctor who is not in the network, they will not have access to the records. This is only one example of why it is important to have copies of your own records..
Some patients, after reviewing their own tests, have suggested a diagnosis to their doctor because they were able to view the results in a larger picture.
The best thing any patient can do is to "Educate" themselves by doing research on the Internet, by networking with other AI patients, and by keeping copies of their health records ( blood results, MRI, medication, and office visit notes).
It will go a long way to save you time and trouble as you doctor-hop your way to getting answers.
And You Will Doctor Hop
It is inevitable. Very few people find just the right physician the first time out. Likewise, very few patients stay with the same doctor for years and years.
No physician keeps a patient to themselves without referring them out to another specialty because, let's face it.......no one physician knows everything about every part of the body.
That's why there are sub-specialties!
You will be referred and referred and referred for consult upon consult. It is a necessary evil to get your diagnosis.
Treatment Plans, Consultations and Referrals
Sometimes patients and doctors get too comfortable with each other so that each appointment becomes a carbon copy of the last appointment. A patient should not be afraid to ask to be referred to another doctor for a consult or to ask for a specific test to be performed.
Every patient should have a treatment plan which should spell out exactly what the treatment is, the expectation at the end of the treatment, with re-evaluation dates along the way.
If your treatment plan isn't moving along to your satisfaction or if your doctor is reluctant to refer you for consults (another physician, neurologist, hematologist, etc.) then it is time for you to ask yourself why you are still going to that doctor.
Before you make the first appointment
Do your research first.
Read patient reviews on Internet.
Google the doctor's name (and the name of the practice) and see what shows in the results.
The waiting room experience
While you are waiting to be seen, ask a few patients how long they've been going to this doctor and how they feel about the care they are receiving.
Ask the name of the doctor they used to go to and ask why they don't go to them anymore. This will be valuable information if you are ever shopping for a new doctor - you can cross them off your list.
Doctors who run a patient mill should be avoided at all costs. You'll know him when you see him -
a) he jam-packs the waiting room with patients,
b) there's usually only one empty chair when you get there,
c) no one waits longer than ten minutes to be seen,
d) the magazines are up to date,
e) the doctor allows you about five minutes of his time - all the while dictating visit notes (using up part of your five minutes), then he dismisses you with "see the receptionist to set up an appointment for six months."
Patients who go to these kinds of doctors usually see little or no change in their medical condition.
A good organized doctor will see patients on time or within thirty minutes of their scheduled appointment time. His patients aren't waiting hours and hours in the waiting room. He has a set amount of time for each patient but he always has a few extra minutes if a patient needs some TLC.
If the doctor is having office hours (in other words, he's not out of the office), I have a two hour limit especially if there are a good number of patients ahead of me. I don't think twice about it - I get up and leave. A patient's time is just as valuable as a doctor's time.
If you find yourself waiting two hours or more, perhaps another doctor would be a better fit for you.
Am I Going To The Right Doctor?
I saw a story on the evening news last week about a "doctor" who had a thriving practice, treating hundreds of patients and - he was a fake! As a former medical student who never graduated, he moved to a new city, paid for a fake diploma he got on the Internet, framed it, and put it up on his office wall. He "practiced medicine" for fifteen years before getting caught.
In this case, a framed degree does not a doctor make.
But in most cases, the degrees that doctors display on their office and exam room walls are the real deal. It should be a red flag when they don't show any degrees.
I used to go to a doctor who had five locations around the city and each office had a copy of his diploma from medical school, several other degrees he acquired over the years and some continuing education certificates. He told me that he put framed copies on the walls of each of his locations because not only did his patients expect to see his diplomas and degrees, but he felt that they gave his patients confidence that he was well qualified and up to date with education.
While you are waiting in the office or exam room, notice the dates of graduation from medical school and other degrees. You want to see the date on the last continuing education certificate to be five years or less.
At any rate, your doctor should be current in certifications, participate in continuing education, and be flexible when you ask to be referred for a consult.
Which Doctor Would You Choose? (Poll added 11/2013)
If you have a diagnosed Autoimmune Disease, which doctor would you rather go to?
Find A Doc - Do Free Background Checks
- Find Doctors by Specialty - Vitals.com
Over two million free patient reviews. Compare & find doctors. Examine doctors with two billion data elements.
- Certification Matters | Find Out if Your Doctor is Board Certified | ABMS
FREE website of the American Board of Medical Specialties (ABMS) that allows patients to check for free if their doctor is Board Certified by an ABMS Member Board and contains information about why Certification Matters to your health
Enter any doctor's name and see what comes up. You might be surprised!
How to Find A Specialist - Personal advice
The best scenario is to find a specialty practice consisting of one or more veteran physicians mixed in with recently graduated physicians (three to five years experience or more) so that you get the best of both worlds.
I, myself, advocate for teaching hospitals because not only are they current on the latest advances but more than likely, everything you need in the way of testing will be available right there.
Here's My Personal Advice:
- Locate the largest teaching hospital near your home (check to see if they accept your insurance plan).
- Call and ask who the chief of neurology is. See if he/she is on your insurance company's list of participating doctors.
- Look them up in the Physicians Registry in your state. (See sidebar) Each state has to provide a short biography, where he/she was educated, the year of graduation for each school, current certifications, and past employment for at least the last ten years. There is usually a link on each state's website to check for suspensions and violations.
- Contact his/her office and ask how many doctors, nurse practitioners and physician assistants are on his/her service.
- Ask what the patient to doctor ratio is. If they don't know, then ask how many patients are active in the practice.
- Ask if you will be seeing the doctor on each visit or the Physician Assistant (PA). Many doctors see patients every third visit and the PA sees patients for all other visits.
- Ask if there is a clinic and if so, does he/she participate in clinic hours. Although this takes him away from office hours, the clinic might be beneficial to you for visits as well.
- Ask what kind of schedule he keeps for his private practice vs clinic hours (see if these hours are convenient for you)
- Find out if he is accepting new patients (many physicians periodically shut down their new patient list for a short time until either their patient load decreases or their staffing increases)
- Ask if he has more than one office that he has to split his hours to accommodate patients. Ask for the addresses of the other locations. Even though you looked it up on the Internet, the online info might not be up to date - things do change! Also ask for phone numbers for the other locations to make sure your researched info is also correct.
Alternative Therapy and Treatments
More and more these days, alternative therapy has found its place in the treatment of autoimmune diseases.
I often think of alternative therapy as Comfort Therapy. If it makes me feel better, that's all I'm looking for. Sometimes my physician can't give me that comfort - not with medications, counseling, or conventional treatment plans - but alternative therapy/medicine can.
Don't be shy about going to Massage Therapists and Chiropractors. If it makes you feel better, you do what you have to do for YOU.
Living with a chronic illness is not easy. Half the battle is getting the correct diagnosis, which for some patients can take years.
The best advice I can give you is to keep reading so you are up to date with the most current information. The one resource you have in the 21st century is the one resource that has long been shunned as the wrong place to get your information - the internet.
It is the wrong place - if it is the ONLY place you get your information.
Don't let any professional put you down for information you read on an internet site. The internet is a good starting place. Whenever you read something on one website, Google it again and see what other kinds of results you get.
Once your disease has a name, you will feel like a heavy burden has been lifted. Getting through your days will be easier. It is the "not knowing" that is hard to deal with.
I hope this article has been helpful in making choices and I wish you well in your quest for a diagnosis.
Published 2/27/2012 - Anne DiGeorge
© 2012 awordlover