My Search for a Diagnosis

Alicia’s Story
July 2008

 

I’ve always wanted to write something really fascinating and meaningful, something that really touches a person. The subject of Churg Strauss Syndrome was certainly not what I had in mind. But, such is life and this is where I find myself – writing about my search for a diagnosis.

It was November 2006 when my first symptoms appeared – plain and simple – I had a stuffy nose. A couple of weeks turned into a month and my simple stuffy nose was now complete nasal blockage, post nasal drip, sneezing, loss of taste and smell, a strange popping in my ears, and horribly sensitive teeth. I’m thinking now is a good time to see the doctor, a man I’ve only met once before. (What I’m trying to say is that I’m never sick, never have been.) “Looks like a sinus infection” he said. Antibiotics, decongestants, and nasal sprays were prescribed – No change. I tried another round of antibiotics and more nasal spray – No change. Things seem to be getting worse. I’m now exclusively ‘mouth breathing’, having miserable pain in my sinuses, and my teeth ache in a way I never knew possible. He refers me to an ENT. “Looking surprisingly like nasal polyps”, he said. More antibiotics, Singulair, and a Medrol Dose Pack of steroids were prescribed. Wow, did I feel better! Unfortunately, within what felt like minutes of finishing the steroid dose, everything came back with a vengeance. A CT scan of my sinuses would reveal some pretty nasty inflammatory sinus disease. I was diagnosed with Chronic Sinusitis and another round of steroids and antibiotics were prescribed. Again, I felt great and got on with life. It was short lived bliss.

By February 2007, another strange symptom arises: blood and mucous in my stool. Not a pleasant thought I know. Explaining this over the phone to my doctor was my worst nightmare. By the time I got the nerve, it had been going on for a few weeks. We decided to wait another couple of weeks to see if it would work itself out. It never did. Also, at this time I have started having a ‘tickle cough’ in my throat. It was winter in Chicago and I just assumed it was part of the whole ‘chronic sinusitis’ package.

March rolls around and all of my symptoms persist. There has been no improvement and it seems to get worse each time I complete a round of steroids. Deep down, I’m feeling something more is going on. The sinusitis and nasal congestion hit an all time high, the cough is more uncontrollable and waking me up at night. I think I’m wheezing. I’m having joint pain and basically walking around in a daze of misery, wondering how in the world I’m going to carry on working part-time and caring for two small children. Physically and emotionally, I felt like I was going downhill. I would go to bed at night in tears reminding my husband to make sure I was still breathing in the morning before he left for work. I felt that bad.

On my 34th birthday I had never felt worse. Thankfully, my doctor squeezed me in that day. As hard as I tried, I could not fight back the tears. “What was wrong with me?” I asked. I thought (and felt like) I was dying. He could hear the wheezing. I was registering only a 290 in the peak flow meter (told it should be closer to 500). He sent me for a chest x-ray, ordered extensive blood work, and a stool sample - not the birthday of my dreams by any stretch. I left his office with my first Albuterol inhaler. All tests came back normal and the chest x-ray was unremarkable. How could I feel this bad and everything be ‘normal’? He referred me to a GI specialist. It took four weeks to be seen. “Looks like Ulcerative Colitis”, he said. A colonoscopy was ordered.

Just when I thought things couldn’t get worse, April rolls around and my life officially changed. The nasal congestion, sinus and GI issues, and joint pain took a back seat to the uncontrollable coughing; hours and hours of non-stop, unproductive coughing. There were nights I would drive myself to the emergency room and sit in the parking lot coughing. I never went in. I don’t know why. I guess I didn’t want to admit that something serious was going on. After all, I have always been healthy, fit, and active. How bad could it be? My days and nights consisted of cough drops, vaporizers, nasal spray, steam showers, and every homeopathic cough remedy known to man. My husband researched relentlessly. What was going on? Who was taking care of the kids? I sure don’t remember doing it. I must have, but God only knows how. One weekend in particular, I slept (and coughed) for two straight days. The pain in my ribs was unbearable. Finally, I dragged myself out of bed and turned on the TV … Mystery Diagnosis was on Discovery Health. As the girl featured on the show begins telling her story, I’m amazed at how similar my seemingly random symptoms are to her’s: Wegener’s Granulomatosis.

By the end of April, I again visit my doctor. This time, I can see the worry on his face. The coughing and wheezing are worse, the GI symptoms are worse, the sinus pain and pressure w/ complete nasal obstruction is worse, the fatigue is painfully obvious. “Looks like asthma”, he said. Asthma? Now I have Asthma? It seemed strange to me that all of these things were unfortunate coincidence. “Could I have Wegener’s, I asked?” We decided to do another complete blood work-up, this time including ANCA. Two days later I had a Pulmonary Function Test and a Colonoscopy, both revealing bad news. I don’t know how I survived that day with no medications, no food or drink, and constant coughing. When it was over, I had 40mg of prednisone at home waiting for me. Almost immediately, life was good again. Had any of this even really happened? I was now feeling a bit foolish for even suggesting the possibility of something as serious as Wegener’s Granulomatosis.

Within days, I got the phone call that I had been waiting for but unfortunately the information was not what I was expecting. The results were in. The only words I remember hearing … elevated eosinophils, positive p-ANCA, asthma, and ulcerative colitis, then there was silence. “Are you okay?” he said. “I don’t know, am I?” I said. “What’s an eosinophil?’ He then proceeds to explain that I likely do not have Wegener’s but the possibility of something else called Churg Strauss Syndrome. “Don’t Google it” he said. I laughed knowing good and well I would. How could I not? He referred me to a rheumatologist.

Lucky for me, the Prednisone prescribed to treat Ulcerative Colitis was, in effect, treating all my symptoms and life was good again. That is, until I did it. I googled Churg Strauss Syndrome! I think I read everything ever published on the subject. “Eosinophils”… “p-ANCA” … What did all this mean? My husband begged me to stop reading. By the end, I was sobbing. My symptoms and test results were right there, almost verbatim. Even so, I was wishing for another explanation. Couldn’t I have a fungal overgrowth in my sinuses causing the asthma, and possibly parasites in my gut causing the colitis, and allergies to explain the eosinophilia? That was it, allergies! Off to the allergist I went. Negative. Everything was negative. I had no allergies to explain any of this. What was wreaking this kind of havoc on my body? What was the trigger? I don’t think I’ll ever know the answer to this. My allergist carefully reviewed all of my previous test results and said, “Well dear, this is all highly suggestive of Churg Strauss.”

It’s May now and sinus surgery was scheduled. I hoped and prayed that through the sinus tissue biopsies we’d get definite answers. I wished for fungus. Never in a million years would I have guessed I’d be wishing for fungus. 20 days on 40mg of prednisone basically wiped out 5 months of horrible sinus problems. The surgery took only 40 minutes. No fungus or infection seen; only inflammatory sinus tissue filled with eosinophils. (There’s that word again). My ENT reiterates, “This all seems suggestive of Churg Strauss”.

My appointment with a rheumatologist was next. I was hopeful this doctor would be the one to piece this all together and make the official diagnosis. She took one look at me and was skeptical of CSS almost immediately. I did not look sick, and frankly I wasn’t feeling too bad either. I had been on prednisone for a month and a half and other than some joint pain and strange feelings in my fingers and toes, I seemed to be doing fine. What about the tests? It was all right there in front of her! Well, she re-ran those tests - all of which came back perfectly normal (which I’ve since learned is not uncommon while on prednisone). She explained away everything. My joint pain was due to hyper-mobility, the ANCA must have been a “false positive”, the eosinophils were from the asthma and allergies (but wait, I didn’t have any allergies), and were also commonly found in nasal polyps. “Mystery solved”, she said. She sent a letter to all my other doctors which effectively stopped the momentum in figuring out what was wrong with me. I was advised to seek anxiety counseling to deal with ulcerative colitis. Her parting words to me were “I, too, sometimes make mountains out of molehills.” I left more confused and upset then ever. My head was spinning. Was this all a mistake?

Within the next 2 months, I tapered off prednisone and fell apart again. My sinus problems returned within days. Once again, complete nasal obstruction, no sense of smell or taste, sensitive teeth, horrible joint pain, and what I know now were feelings of neuropathy in my arms, hands, and feet. I saw my main doctor one more time. There were no words to describe how bad I was feeling. I hoped he would see it in my face. He didn’t. He didn’t ‘see’ anything and was now feeling non-committal on the issue of Churg Strauss. He also suggested medication for anxiety and depression. I felt so lost. Even he, who had been so supportive and directed was now deserting me.

After months under an umbrella of suspicion for Churg Strauss, I referred myself to The Cleveland Clinic to meet with Dr. Gary Hoffman. I waited 3 months for this appointment, literally crossing the days off the calendar. Within hours of seeing him, I was diagnosed with Churg Strauss Syndrome. I was relieved to finally have a definitive answer – and yes, a treatment plan. I felt vindicated, but wait, I really had CSS! What does this mean? What do I do? What about the kids? How were my husband and family going to adjust? The truth was, we had all known deep down for quite some time. Now we could deal with a name officially and move forward with treatment. It’s funny, with all of the information listed on the official diagnostic assessment, one thing in particular jumped off the page. It said, “General Appearance: Fatigued”. That said it all. I was tired. I had spent the better part of a year running from doctor to doctor in search of answers. I spent an endless number of hours researching, desperately trying to figure out what was wrong with me. I wanted my life back. I was beyond tired. I was ready to lift this burden off my shoulders and let someone else take over.

It’s been almost a year since my diagnosis. I’m finally in a place where this is not consuming my life. I don’t know how I ever made it through, but somehow I did and I think I’m stronger for it. I’m sad that I feel like I missed my son’s whole 2nd year of life, my daughter’s 4th, and my 5th year of marriage. I still have bad days, but I no longer stress over every ache and pain. I’m learning to accept Churg Strauss and all that comes with it. Acceptance has been difficult. I often catch myself thinking of my old life, but I refuse to give any more of my precious energy worrying about the ‘what ifs’. I need more sleep than I used to. I’ve learned to ask for help. I cherish the little moments at home with my husband and kids. My dear husband … how has he put up with all of this? I now know what unconditional love is. He has been my rock, my friend, my shoulder to cry on, my motivator, and the most wonderful father to our children. I could not have picked a better man. We have a long road ahead of us, but we’re confident I will reach a point of remission. I hope this story gives hope to someone searching for answers too.

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