Diagnosis
Your Medical Team
There will be at least two important members of your medical team: your general practitioner or family doctor and your specialist.
Your specialist, as the name implies, has a high level of expertise in dealing with inflammatory diseases like Adult Onset Still’s Disease. In most cases your specialist will be a rheumatologist, although you may also be referred to an immunologist or a general physician.
Rheumatologists deal exclusively with inflammatory and auto-immune diseases like rheumatoid arthritis, lupus and ulcerative colitis, and have the necessary skills and expertise to prescribe you a treatment regime that will help you manage the symptoms of Adult Onset Still’s Disease.
Although you will be referred to a specialist relatively quickly by your family doctor, he or she is still a vital component of your AOSD management plan. The main problem with rheumatologists is that they are often booked solid for weeks or months in the future - inflammation is a popular illness. Your GP, in most cases, will be much more accessible and will help you with a course of action to deal with related complaints, prescriptions and any new symptoms that you may experience.
Although your GP may refer you back to your rheumatologist, they may be able to offer help in the meantime, either by way of offering support or by providing an interim medication or recommendation.
The other medical professionals that you may deal with over the course of your illness are radiologists (if x-rays are required), physiotherapists and a pathology technician who will take your blood when tests are required.
Of critical importance is your relationship with your medical team. It is very important that you not only trust your medical team, but that you know how to effectively communicate with them. If you are part of the Taking Control Of Still’s Disease newsletter, you’ll be receiving practical tips and techniques that you can use to maximise your relationship with your medical team.
What Causes Adult Onset Still’s Disease?
Newly diagnosed patients will always want to know how the contracted the disease in the first place… this is not an easy question to answer. Adult Onset Still’s Disease is what is known as an idiopathic disease, meaning that the aetiology or cause of the illness is not yet understood.
The most common theory regarding the origin of the illness is that it is an auto-immune illness, possibly caused by an infection or microbe. Basically this means that the body becomes hyper-sensitive to itself and begins attacking healthy tissue. In the case of AOSD, the body’s immune system targets the lining around the joints, organs and other bodily systems.
Diagnosing Adult Onset Still’s Disease
If I could take the liberty of making an educated guess, I would say that your doctor was not able to diagnose you with Adult Onset Still’s Disease before you had taken several trips between the blood lab and the doctor’s office. Still’s Disease sufferers are often misdiagnosed with a host of other illnesses including influenza, malaria, lupus and rheumatoid arthritis before the correct condition is identified.
The speed in which your doctor diagnosed your illness is not a comment on his or her competence - it is more due to the elusiveness of Adult Onset Still’s Disease itself. If we were going to be completely accurate, AOSD is not so much a disease as it is a collection of symptoms.
There is no definitive test that identifies Adult Onset Still’s Disease. Usually it is diagnosed by ruling out other diseases first. Your doctor would have tested the following blood markers to try and make a diagnosis:
Rheumatoid Factor
People that suffer with Rheumatoid Arthritis have elevated levels of this marker. AOSD sufferers, however, show no such elevation.
SLE (Lupus) Tests
Lupus, another auto-immune disease is identified through a series of tests including CBC, ANA and ENA. Again, Adult Onset Still’s Disease patients show no such elevation with these tests.
ESR
The ethrocyte-elevation rate indicates general inflammation in the body. Normal ESR rates sit between 1-15mm/hour. When AOSD is in its acute phase, the ESR rate often exceeds 50mm/hour.
CRP
The C-Reactive Protein rate is another inflammation marker that measures the evidence of a special protein that is secreted by the liver. Adult Onset Still’s Disease sufferers have been known to exceed 150 units - compared to the normal rate of less than six units.
Viral and Bacterial Indicators
You may also be tested for mosquito-borne diseases and other viral and bacterial infection markers. The symptoms of these illnesses can often mimic those of AOSD.
Others
Your doctor will also order tests that measure your haemoglobin (Hb), ferretin, blood cell size (MCV), platelet counts, as well as others to try and form a diagnosis.
Once these tests have been compiled, your doctor will complete a differential diagnosis. This is the process whereby other illnesses are ruled out before identifying the actual disease. This can be a drawn out process, depending on your doctor’s experience dealing with Adult Onset Still’s Disease.
Often you will not be diagnosed with Still’s Disease until you are referred to a specialist. [...next]
What is the long term prognosis of Still’s Disease?
How is Still’s Disease treated with medication?
What are the best supplements to take?
What alternative therapies are beneficial?
