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Rare Disease Reveals The Value Of Primary Care

Faced with the symptoms of a rare and poorly understood disease, this patient learned the value of a primary care physician who really knew her.

By Nita Feierstein

After giving birth to my first child, I developed a bizarre constellation of symptoms, including low-grade fevers, skin rashes, and joint pain, and I was unable to nurse my new baby.
I went to my primary care doctor, a general internist, who ordered some labs that revealed a frighteningly high eosiniphil count – a type of white blood cell. She ultimately referred me to a rheumatologist for the joint pain and a dermatologist for the rash. Through a skin biopsy that showed a high level of eosiniphils infiltrating the skin, the two specialists diagnosed my disease as Churg-Strauss syndrome (CSS). I was on prednisone for the next two years and remained symptom-free.
When I was diagnosed in 1986, few doctors had even heard of CSS. No one was able to tell me what to expect in the future. The rheumatologist and my primary care physician followed me closely. My primary doctor was very attentive to any concern or symptom that I brought to her attention. She was on the lookout for any signs of a recurrence. Over the next eight years, we developed a relationship, the value of which I wouldn’t realize until much later.
When my employer switched health plans about eight years after my diagnosis, I had to switch to a primary care provider that was in the new network. I had been well for a number of years and didn’t think that this would be a problem.          
Then about two years later, approximately ten years after my first flare-up of CSS, I developed another bizarre constellation of symptoms, but which were totally different from the first set. I was having numbness and tingling in my hands and leg for several days. One morning I woke up and could not move my foot. I went to the new primary care doctor, who immediately concluded that I had a disc problem and sent me to an orthopedic practice. I was squeezed in to see the NP and was scheduled for surgery.
While meeting with the surgeon prior to surgery, I mentioned that I was having numbness and tingling in my other foot, too. He immediately canceled the surgery and sent me home with an appointment to see a neurologist. The neurologist performed a nerve conduction study and mentioned off handedly, “Gee if I didn’t know better I would think this looks like Churg-Strauss.” I had been trying to tell her my history of CSS, but she didn’t seem interested until this moment. And it had never occurred to me that this could be a recurrence. The CSS had caused an inflammation of my sciatic nerve. I did not know that it could present in this way, nor that it was actually a chronic disease.
I went home with high doses of steroids, but continued to have terrible nerve pain, especially at night.
I felt like I was lost in a system that didn’t know or understand me. I felt like I was being tossed from one doctor to another, none of whom actually knew what to do with me. No one was managing my pain. I realized how important it was to have a long-term relationship with one doctor who really knows me. I remembered how my former primary doctor had managed and monitored my condition until I had had to find a new doctor. That’s when I decided that even if it would cost me more money, I needed to go back to my original doctor with whom I had had a relationship for many years. I could trust that she understood my history, took my concerns seriously, and would stay in close communication with any specialist to whom she referred me.
I have stayed with my primary care doctor ever since this frightening experience. She has guided me seamlessly through several more flare-ups of my disease, supporting and encouraging me along the way. I would never again consider leaving this doctor, and in fact, would never move away from the Boston area for fear of being unable to replace the relationship that I have with her. I trust her implicitly, and know that she will have my back no matter what comes my way. 

Nita Feierstein, LICSW, practices social work at Hebrew Senior Life, the largest provider of geriatric health and housing services in New England, where she has worked for 20 years. She is married with 2 adult children, and enjoys vegetarian cooking, exercise videos, reading, beading, knitting, and walking with her dog. 

Read more patient stories
Posted by Sonya Collins on Jan 16, 2014 10:04 AM America/New_York
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