If It Quacks Like a Duck…
We’ve all heard the expression, ” If it looks like a duck and quacks like a duck…it must be a duck”. Well, not necessarily when it comes to autoimmune conditions. Often they present in a clear, undeniable, ‘can’t be doubted’ kind of way, yet the bloodwork test(s) that supports the diagnosis is negative. Does it mean that the patient does not have the autoimmune disease? Absolutely not. It means that a certain number of patients (some estimates say 20% to 40%) of Sjogren’s Syndrome Patients do not have positive bloodwork. These patients are otherwise known as being “seronegative“.
On the other hand, a patient can and often does have more than one autoimmune disease or a mixture of cross-over symptoms of various autoimmune conditions. Diagnosing this mixture of cross-over symptoms can be equally frustrating for both the physician and patient, particularly when, again, there may be no positive bloodwork to support some of the co-morbid diagnoses.
I co-lead a support group for Sjogren’s Syndrome patients and am always receiving calls & referrals from patients who have been referred to me for possible inclusion in our group or just for Sjogren’s information.
I received a call a number of months ago from a very nice woman who wanted group information and also was looking to establish a Rheumatologist familiar with Sjogren’s Syndrome. We maintain a list of doctors in the Pittsburgh area for just such calls. One of those doctors, who also happens to be my physician, is a doctor who was trained under one of the leading Sjogren’s doctors in the country. This doctor is also in the process of starting a Sjogren’s Syndrome Clinic here in Pittsburgh.
Excited to finally get some answers, our new member contacted my doctor for an appointment. Both she & her husband attended her first doctor appointment, which she told me, lasted about 1.5 hours. The woman was ecstatic to finally have found a caring doctor who would diagnose and treat her. She was impressed with his thoroughness, the way that he listened to her and the large number of blood tests he ordered to help find answers.
But then a very disappointing and familiar scenario happened. When she returned to his office to discuss the testing results, the doctor informed her that she did not test positive for Sjogren’s Syndrome and therefore, does not have Sjogren’s. It is a frequent story that I hear from some of our group members and by many folks who frequent the Sjogren’s World Forum. And it is of course, understandably upsetting. After months or years of dealing with multiple symptoms, severe fatigue and pain, one gets excited at finally being diagnosed and more importantly, treated, only to find out that they are now back at square one. Not only that, the patient has just learned from this doctor, that he only believes that her condition is Sjogren’s Syndrome if the bloodwork says it is, because that is the teaching philosophy of teachers that he was instructed by and he follows. Instead, she is told (as so many are), that she has Fibromyalgia. I will save my personal rant about Fibromyalgia as the frequent “go to” diagnosis when other clear-cut answers have not been found…for another day. But I will say this, I had the exact same Seronegative label until I discovered that as a person with severe immune deficiencies, I cannot produce the antibodies that would “prove” I have Sjogren’s Syndrome. It is very common for Sjogren’s patients to have immune deficiencies, which may, for some, explain their seronegative status.
Which came first, the lack of diagnosis or the depression?
Is there any doubt that autoimmune patients get depressed by all of this? I have read some studies where depression and brain fog were the initial presenting symptoms of Sjogren’s. Whether depression is an actual symptom of Sjogren’s Syndrome or whether it is a situational result from dealing with chronic illness and/or the lack of diagnosis/treatment, it seems inevitable that at one time or another, autoimmune patients (Sjogren’s and others) will experience depression.
I felt badly when my new member suggested that perhaps she should not be a part of the group since the doctor told her that she did not have Sjogren’s Syndrome. Yet, she knew in her mind and in her painfully afflicted body, that she did have Sjogren’s Syndrome. Does it mean that even though she knows her body better than anyone else, but because she did not attend Med School that she is automatically wrong? I personally don’t think so. But most of us patients are treated exactly that way. I would much rather see doctors act as partners with their patients in finding the correct diagnosis and treatment. That doesn’t mean that they must have the answer right after the bloodwork. Afterall, it is (or should be) a process of elimination in ruling out conditions to ultimately and eventually arrive at the correct diagnosis and treatment. I do have an Immunologist that uses this approach & I very much appreciated his honesty about having no clue what my diagnosis was and not shooting from the hip with a wrong diagnosis. How refreshing.
What I don’t understand (and maybe some physicians do this and I am just unaware of it), is why can’t vague and nebulous autoimmune illnesses like Sjogren’s Syndrome, be diagnosed in the same way that ADHD is? That is, ADHD (Attention Deficit Hyperactivity Disorder) is a disease which has no single, diagnosing test. The physician, therefore gathers information about the person and symptomology when making the ADHD diagnosis. And ultimately, the patient is treated with medication. If the patient responds to the medication in a positive way, then the diagnosis of ADHD is confirmed. Wouldn’t it be a lot easier to make a positive assumption of the Sjogren’s Syndrome Diagnosis when faced with overwhelming symptomology in the absence of positive bloodwork and treat it accordingly?? If the patient responds favorably, then we can assume that indeed, the patient has Sjogren’s Syndrome. Who knows, this might even alleviate some of the patient’s mental anguish and subsequent depression. But maybe that’s just me…what do you think?
SjoDry and Quacking