Papercut and colored pencil art by Sheryl Aronson X 5

Tuesday, October 19, 2010

Difficulty Getting a Diagnosis

A person goes to his/her doctor to find out why (s)he is sick.  (S)he tells the doctor the symptoms, the doctor has to figure out what the problem is before beginning treatment.  The doctor orders blood and other tests to rule in or rule out likely illnesses and to make the diagnosis.   Doctors are trained that ‘When you hear hoof beats, think horses, not zebras’.  This means that the patient is more likely to have something common, rather than something exotic. 
If lab tests don’t show any problem, the doctor may tell the patient there is nothing wrong, when in actuality, it may be that the right lab test has not yet been developed.  The patient may be viewed as a hypochondriac.  They may be described as doctor shopping for going from one doctor to another in their quest to find someone who can figure out what is wrong with them.  Many illnesses take years to be diagnosed, meanwhile, the patient has to be ‘patient’.  (Sjogren’s syndrome is one of the longest, averaging 6-7 years)  Many illnesses overlap, or mimic each other, and patients are often misdiagnosed, and may be given medicine that does not help, and may even harm them.  
Notorious for difficulty in diagnosis are autoimmune illnesses, which often overlap.  There are blood tests for many of them, but these blood tests are not definitive.  ANA is one blood test that is common to several autoimmune illnesses, including Sjogren’s syndrome and Lupus.  SS-A and SS-B are more specific to Sjogren’s, but can also be found in people with Lupus.
One of the tricky things about blood tests for autoimmune diseases is that a negative blood test does not necessarily mean that the disease isn’t present.  When I was first diagnosed with Sjogren’s, I had a positive ANA and positive SS-A.  In more recent blood tests the ANA has remained positive, but the SS-A has sometimes been positive, sometimes not.  I read somewhere that these markers will start out positive early on in the disease process, and then become negative as the illness progresses.  I don’t know that there is any consensus on this.  Sometimes people are told they don’t have a particular disease based on negative blood tests.  Doctors who believe this don’t understand the complexities of these diseases, and are doing their patients a major disservice.  A doctor who understands these diseases will know that sometimes the disease is there even if the blood tests are negative, and will make a diagnosis based on symptoms.  I know of some people who are savvy enough to know this, and have told their doctor they disagree with the ‘non-diagnosis’.  Unfortunately, most people who are searching for a diagnosis for their symptoms don’t know so much, and believe their doctor when told they don’t have a particular disease.  They then continue on the search, spending years of their life ill, because no one will treat them if nothing is diagnosed.
The availability of so much information at our fingertips, by way of the internet, has changed the dynamics of finding a diagnosis.  It has helped some people to diagnose themselves; they then go to a doctor to confirm the diagnosis.  For other people, it has muddied the waters, and not only confused them, but also scared them out of their wits with the possibilities they find. 
My suggestion, if you have not yet gotten a diagnosis for what ails you, is to search the internet, but have a large grain of salt handy.  Information on the internet is not always accurate.  If you think you have found something that pertains to you, print it out, and take it with you to your doctor.   If your doctor disregards what you brought in, ask for an explanation why.  They may have good reasons that you did not know about.  On the other hand, doctors have egos just like the rest of us, and some doctors don’t like patients who think they know something.  Go with your gut.  If your doctor doesn’t take you seriously, find another doctor.  Many of us had to visit several doctors before finding a diagnosis.  I was diagnosed when my doctor was out and I had to see someone else in his practice.  With my own doctor, I only brought up the current issues.  With this new doctor, I gave him some background to bring him up to speed with the various things going on with me.  He put it all together, and said it sounded like I had Sjogren’s syndrome, and he sent me to a rheumatologist to confirm.  
This brings me to another suggestion.  Try going to a specialist in the area of what you think may be the problem.   For example, a rheumatologist works with arthritis and autoimmune syndromes, and an endocrinologist works with hormones, treating a variety of diseases, including diabetes.
Once you are diagnosed, learn as much as you can about your disease.  Get involved with national organizations, local support groups and online communities.  These groups will help you learn about and get more comfortable with your diagnosis.  They will understand what you are going through better than anyone without your disease can.  Educate others about your disease.  They will not only understand you better, but over time, if enough of us educate others, autoimmunity and other diseases will be better understood by the general public.  They will be more accepting of our needs, more comfortable around us ‘sickies’, and maybe, someday, people will get diagnosed and treated earlier.

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