My Thirty Years Story – So Far!
My name is Nita. I am now 51, have had three distinct diagnoses of CSS and since hindsight is 20/20, I now believe that my Churg Strauss actually started in my 20’s. I have been reading the other stories on this site, and I am amazed at the similarities with my own experience. I will try to keep my story succinct, and I hope that it is helpful to others.
As a college student I suffered from severe sinus congestion, lost my sense of smell and eventually had surgery for nasal polyps. Shortly thereafter I developed asthma, and needed to be hospitalized multiple times to get it under control. Throughout my 20s I continued to have severe asthma, nasal polyps and recurrent ear infections. Looking back, I also remember that I had itchy red bumps on the palms of my hands (which were later diagnosed as eosiniphiliac).
In 1986, when I was 31, I developed bizarre symptoms about a week after I gave birth to my first child: a purple rash on my chest, night sweats, low grade fevers, joint pain, itchy red bumps on the palms of my hands (which were biopsied and showed eosiniphils), and loss of appetite. I was unable to nurse my baby. I thought I was going crazy! After a couple weeks of many physicians and tests, I was given the news: Churg Strauss vasculitis. I was started on prednisone and felt better almost immediately. I was on the steroids for about 2 1/2 years, and was relatively well (except for asthma, polyps and loss of smell) until the next episode 10 years later.
The second episode occurred when I was on vacation with my husband and two children at Disney World! I experienced a tingling in my hands and a weird sensation in my butt such that I could not sit comfortably. There was nothing at all similar about this to make one think of CSS. We returned home, and I woke up the next morning with a foot drop!! Unfortunately I had switched physicians because my health insurance had changed, so I was being evaluated by docs who did not remember what I had experienced previously. This was a huge error in retrospect. I almost ended up with back surgery for a disc problem, before we realized there was something else going on. While a neurologist (who had not read my medical record) was performing an EMG she exclamed, almost to herself, “this almost looks like Churg Strauss”! My mother was in the room with me and we looked at each other in disbelief!! Who would think that such seemingly unrelated symptoms could be the same disease!!
So, since doctors are so concerned about having definitive evidence before they treat, I was asked to endure a biopsy of my leg to confirm the presence of eosiniphils. Although I had multiple incisions, and my seral nerve was cut (leaving me with loss of sensation in part of my foot), they happened to not find a spot that would give them the info they wanted. I was told that my sciatic nerve was involved and that it was as though my sciatic nerve had had a stroke because the inflammation of the blood vessels had cut off the blood supply to the nerve. I had to be fitted with a foot brace, and had to use a cane. I developed severe nerve pain that kept me lying in bed in agony, and was finally started on Elavil which was the only thing that helped the pain. Until I was diagnosed I thought I was dying! The diagnosis was confirmed on the basis of lab results and past history. My symptoms were quickly controlled with prednisone and, later, Imuran. Most of my neurological damage healed over the next year. After six weeks out of work on medical leave, I returned to a job that I love as a social worker in a facility for the aged, though I was barely recognizable to some because of the Cushing’s Syndrome and the cane! I joined Weight Watchers a year later, started to exercise, and lost all of the weight that I had put on. Life was good.
The next 10 years were more of the same: asthma and nasal polyps, and now I started to have recurrent ear infections again. The past couple of years have been characterized by an increase in all of these problems. I had tubes put in both ears last March (2006). The ear infections continued despite the tubes. Every time I had an ear infection the asthma also was triggered, so I would end up on a short course of prednisone. This has been going on for quite some time. I also experienced a tingling in my fingers. In retrospect, I think the CSS was a factor, but my lab results have not been indicating that there was an inflammatory process at work. Perhaps they were suppressed from the frequent steroid use.
So, this week as I was recovering from yet another ear infection, I developed symptoms of a UTI and pain in my left mid back. At the same time my sinus congestion became unbearable. My PCP thought that I had developed a fungal UTI from the frequent antibiotic use. Ultrasound of the kidneys showed inflammation in the ureters. I do not know if this was unrelated or if it is symptomatic of the CSS. I also saw my ENT who (sorry in advance for the graphic description) said that my sinus was red and inflamed, the stuff coming out of my ears was the same stuff in my sinus, and he extracted a thick, white globule that he identified as consisting of eosiniphil cells that had come from the sinus. He was sure that this was Churg Strauss!! I have been so sick for the past week with urinary problems and kidney pain, sinus problems, fever, ear congestion and loss of hearing, but it never occurred to me that this was the CSS again! My lab results now showed an increase in eosiniphils to 17%. I started taking prednisone and immediately began to feel so much better. I have been out of work for the past week. My rheumotologist is probably going to wean me from the steroids onto Methotrexate. She and I had speculated last summer about the Churg Strauss being a factor in my recurrent ear problems, but did not have the lab results to back it up. I am now convinced.
I am looking forward to getting back to my life. I now understand that CSS is a chronic illness with flares, rather than distinct episodes. I can avoid the frequent and recurrent low grade chronic illness that has been making me sick for the past two years.
I hope that others find my story helpful. My thanks to everyone else out there who has shared theirs!
Published: January 2007
To read more stories, please visit the Vasculitis Stories landing page.