The Challenge of Being Diagnosed with Lupus
Tuesday, September 20, 2005
The Challenge of Being Diagnosed with Lupus
by RemedyFind Columnist and Lupus Host - Suzanne Davis
One thing I hear from people with auto-immune diseases is how frustrated they are when it comes to getting a precise diagnosis. Many have the diagnosis of Undifferentiated Connective Tissue Disease (UCTD), meaning that they have signs of an auto-immune disease, but that the doctor cannot tell which one yet. Many cases remain undifferentiated, but others will continue to evolve into a specific disease. Lupus is particularly hard to diagnose, as it can affect any part of the body, and it is different in each and every patient.
Many patients present to their doctors with sun sensitivity and/or joint discomfort. Sometimes excessive hair loss is what drives them to the doctor. Fatigue and fever or depression may come first in others.
The care physician will often request lab work, which may or may not show an elevated Anti Nucleic Antibody (ANA). Healthy people may have positive ANA, but they are usually in small titers (1:320 or less). The sensitivity of ANA test for SLE is very high (almost 100%) but its specificity low since ANA can be present in a number of different clinical conditions and even in normal controls. 25-40% of normal, healthy adult females may be ANA positive and never develop lupus or other connective tissue disease.
If the primary care physician is suspicious of an autoimmune disorder, he/she will probably send the patient to see a rheumatologist. After taking a careful history and running lab tests, the rheumatologist tries to put the pieces of the puzzle together. Most times patients must fulfill four out of eleven of the American College of Rheumatology criteria for lupus. However, there are occasions when only one criterion must be met. Should the doctor do a kidney biopsy and find definite lupus involvement, lupus may be diagnosed on that criterion alone.
Rarely do patients present with enough criteria for an exact diagnosis. Does the joint pain and inflammation point to lupus or rheumatoid arthritis? Do the dry mouth and eyes indicate lupus? Is the depression due to lupus or something else?
When studies are ordered they may be inconclusive. Is the patient having seizures (one of the criteria)? Some of the lab tests may be abnormal in more than one disease. An example is anti SS-A or SS-B antibodies that may be found in lupus. RF (rheumatoid factor) may be found in either rheumatoid arthritis or lupus.
All of this often creates anxiety for the patient. Are their symptoms real? Many have been to several doctors who have told them they need more rest or are imagining their symptoms.
In addition to this, the typical auto-immune patient doesn’t look like ill. Friends and family are likely to tell the patient they are looking good. This can feel very invalidating to the patient, who may be feverish, fatigued, have pain, foggy thinking, and generally feel sick.
How does a person describe UCTD to others, much less to themselves? It’s like being told the patient is sick, but not enough to know which illness it is. Employers are not likely to understand the need for disability accommodations for UCTD, something they are not familiar with.
Fortunately the symptoms and lab work may become more specific over time, leading to the diagnosis of lupus (SLE, SCLE, or DLE).
For many of the patients I have spoken with, the diagnosis of lupus is a great relief. While it is sobering to hear that one has such a serious disease, at least one can name then face it. The diagnosis validates what the patient has been feeling for perhaps a number of years, but couldn’t express.
Such goes one of the first encounters with a major auto-immune disease.
Blogged on 6:17 PM
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