Expert: Suzan Jackson - 4/24/2007

Question
I am 44 years old and was just diagnosed positive with EVB with symptoms of sore throat, tiredness,and swollen glands.  I had mono as a teenager with the same symptoms.  For the past 3-4 years, I have been getting increasingly fatigued.  I have many symptoms consistent with MS so I had a spinal tap which was negative, and I had an MRI that did show lesions consistent with MS, per the Radiologist, however was never diagnosed with it.  My neurologist said the lesions didn't look to him like MS lesions.  Tiredness is my main symptom throughout the past few years.  I am struggling at work with missed days and poor work performance.  I came upon this site and now am wondering if I have CFS and have had it for years.  I find that I have no reserve for strength when I get upset or sick. We had a death in our family recently and right afterwards I developed the mono symptoms. Please advise on how to get the proper diagnosis.  

Answer
Hi, Connie -

I'm sorry to hear that you've been so ill.

Recurring sore throat, swollen glands, and fatigue does sound like it could possibly be CFS, but it could be something else as well.  Unfortunately, there is no positive test yet for CFS (though it's getting closer!), so diagnosis is based on a set of symptoms in a particular pattern, plus eliminating other possibilities through tests.  MS and CFS do share many characteristics and are sometimes mistaken for each other.  

One of the primary distinguishing features of CFS is an exercise intolerance (the CDC calls it "post-exertional malaise").  This creates a unique pattern of symptoms for many with CFS, where they may feel good on some days (or at least better) but any level of exertion causes a "crash", a sudden onset of flu-like symptoms that starts within 2-24 hours and that can last for days or even weeks.  

The best source of information on CFS is the CFIDS Association of America.  Their website has a self-test for determining whether you might have CFS:

http://www.cfids.org/about-cfids/do-i-have-cfids.asp

Here's another article from the site on diagnostic tests to eliminate other possible causes of fatigue:

http://www.cfids.org/about-cfids/diagnostic-testing.asp#tests

If you think you might have CFS, the big challenge is finding a doctor who is knowledgable about it.  Many doctors are not up-to-date on the latest research.  Some doctors even say that they "don't believe in" CFS.  Don't put up with this!  There are now decades of research proving that CFS is a very real and very debilitating illness, with specific genetic, immune, and endocrinological (sp?) characteristics.  If your current doctor isn't willing to explore this possibility with you, look around to find a doctor who treats others with CFS.  You could try asking for recommendations at the immune support message board:

http://www.immunesupport.com/

(click on message boards and register for free to post and read messages).

Good luck in finding an accurate diagnosis.

Sue Jackson

www.livewithcfs.blogspot.com