December 2015 CSS/EGPA Awareness Post
Is That A Horse Or A Zebra?
by Dennis L.
When I asked myself why I volunteered to write something about my history with Churg Strauss Syndrome (CSS) (also known as eosinophilic granulomatosis with polyangiitis [EGPA] or allergic granulomatosis,) I heard a voice that sounded like many doctors we’ve all seen and heard: “Could be the medications.”
Then I asked myself what angle should I take and I heard some of those same voices: “I don’t know, let’s run some more tests and see what develops.”
I underwent seven sinus/polyps surgeries prior to my diagnosis of CSS in 2005. The last surgery was in late 2004, from which I had trouble bouncing back…literally! Active in youth sports coaching for years, my attempt to return to basketball practice left me on the sidelines, dizzy and exhausted. I thought that maybe that nasty three letter word ”age” might have slowed my recovery, so I went about the business of living and working, acting as if everything was okay.
Two weeks later, I was hospitalized due to shortness of breath. Pulmonary Infiltrates showed up in both lungs, I was treated for pneumonia with antibiotics and oxygen, while giving the same “no” answer to that pleasant question: “Are you coughing up anything?” After two weeks of being unable to convince the pulmonary doctors that I did not have pneumonia, I heard from my primary care doctor about an article he had just read in The New England Journal of Medicine concerning CSS…First time he had heard the term, First time I had heard the term. He checked with the ENT who had performed the sinus surgery and found my Eosinophil count was excessively high. My primary care doctor had no hospital privileges so we worked together to get the disbelieving doctors to drop the antibiotics and start a high dose of Prednisone. Two days later, I walked out of the hospital without the aid of any added oxygen.
As I tried to reduce the Prednisone, other symptoms presented themselves; neuropathy in arms, legs, and feet, skin rash on legs, fatigue and blood clots. I was sent to the Medical University of South Carolina, where I was immediately started on around-the-clock IV’s of Cytoxan and steroids for four days. After dismissal, I received IV treatments of Cytoxan once per month for six months, along with being placed on oral dosages of Methotrexate and Prednisone.
Subsequent to that initial fun, I’ve had a number of illnesses: pulmonary embolisms, prostate cancer, phlebitis, cataracts in both eyes, and possible kidney and abdominal involvement.
I’ve also had many personal setbacks since 2005: my wife decided to leave after 34+ years together, the loss of work and the need to go on disability, personal bankruptcy, and the deaths of my parents in the past three years.
Understanding that not everybody’s symptoms, tolerances, or life situations are identical, I
believe there are two major stages in dealing with life with this disease. The first stage consists of sitting on the sidelines letting doctors, nurses, and tests run your life, becoming an accomplished actor when you know that something is not right with your body. Others don’t believe it so you use your acting skills to move into denial…maybe even believing you don’t really have CSS and everybody else must be right.
The second stage takes a more positive and proactive approach, believing and hoping that you do have some power over this unique syndrome. Actively question doctors and test results. Don’t accept snapshot results…make sure your medical team is looking at trends. Change doctors who don’t try to answer your questions. Believe that there are people out there who can help you. Get back in the game as much as possible…don’t let everything keep you on the bench!
Now to explain the title: in my recent search for another opinion, I was referred to a new nephrologist. He was a pleasant young man. We had a good discussion on autoimmune diseases and the need to treat them differently. He then related a quote from his medical professor: “If you hear hooves, it may not be a horse, it may be a zebra.” With autoimmune diseases, you need to be sure your medical team is looking for both the horse and the zebra!
Kevin Selig was diagnosed in January 2014 with Churg Strauss Syndrome and fought a courageous battle against the disease. Kevin passed away on Saturday, June 21, 2014, at the Mayo Clinic Hospital in Jacksonville, Florida.
We in the CSS community were saddened by the loss of such a vibrant human being and reminded how our illness often goes undetected until too late. Glenys , a very brave CSS warrior, set us into motion to bring awareness to our disease with a challenge to raise awareness of Churg Strauss Syndrome by posting a story on the the 1st of every month in an effort to let the world know we exist and we want to help others obtain earlier diagnoses.
by karen in wonderland