My Experience with Uveitis: by Mary

January 6,1997. It was a clear, bright and cold day. I regretted not having sunglasses with me as I left my building to walk to another, on the corporate campus where I worked. The sun’s glare was quite painful, and I had to squint my eyes almost shut as I walked. Suddenly, out of the corner of my right eye, a shower of floaters appeared, seemingly thousands of them. “What now,” I thought. “Something else to worry about.” For the previous six weeks, I had been experiencing strange and baffling symptoms that my doctors had not been able to label with a diagnosis.

or three days in December, I had run a fever, between 101 and 103 degrees. I stayed at home, taking Tylenol and drinking a lot of juice. Since I had no other symptoms, I thought it was probably nothing to be concerned about. After the fever broke, I went into the bathroom to take a shower. Looking into the mirror, I saw a large, unsightly lesion beneath my nose. A few days later, lesions erupted within my nose, and my forehead broke out in what my primary doctor called a “violent” rash. It was then I began my round of doctors, each treating the symptoms, but none able to diagnose the disease causing them. Later, I was to learn that these symptoms were connected to the shower of floaters that had appeared in my eye. Additionally, frightening episodes of coughing and laryngeal spasms occurring five years earlier were probably a part of the disease as well.

When the floaters appeared, I made an appointment with a local ophthalmologist. He looked in my eyes, told me I had experienced a hemorrhage, and not to worry. After all, I was fifty-two, near sighted, and hemorrhages are not uncommon in a person of my age suffering from myopia. When I explained my other symptoms to him, he said they were not related to the problem with my eyes. The doctor stated it would take a long time for the blood to dissipate in my eye, but it was more aggravation than anything else.

Two weeks later, the same shower of floaters appeared in my left eye. I immediately left work to see the ophthalmologist a second time. By this time, my vision was greatly reduced, and I was frightened. He again looked into my eyes, told me I had experienced a hemorrhage in the left eye. I asked him what could have caused it, and he said “bad luck.” I walked out of the office. Something was going on that was more than “bad luck” and I was going to have to take control and find a doctor who would at least attempt to give me a diagnosis.

I returned to work and told everyone what had happened. My sense was that someone among my co-workers would be able to recommend a doctor for me to see. Someone did. Her husband had a chronic eye disease and was under the care of a doctor in a nearby town. They thought highly of this physician, and she gave me his number. His receptionist, after hearing my story, told me she would relay it to the doctor and if he thought it was serious, he would call me. “Right,” I thought. That night at 7:30, the doctor called. I repeated my story, and he said he would see me at 9:00. “Tomorrow morning?” I asked. “No, tonight.”

That night, he examined my eyes. “I don’t know what’s going on,” he stated, “but your eyes are so full of blood you can’t see out and I can’t see in.” He said my retinas could be detaching. Whatever it was, it was serious, and he would contact a retina-vitreous specialist for me to see the next morning. I was to go home, stay in an upright position, and wait for the retina-vitreous center to call. I sat upright that night, frightened, but grateful I had found an ophthalmologist who took my situation seriously. He is one of several doctors to whom I will be eternally grateful.

That next morning I was in the retina-vitreous center by 8:30. The doctor examined me and then asked my husband and me to wait a few minutes while he recorded his findings. Finally he turned to us and said, “You have uveitis.” “Uve-what?” He explained the disease and informed us that it is a result of some other process going on in the body. There were many causes of the disease, and with some patients, the root cause was never found. He started asking me questions about my general health and then asked if I had any other episodes of serious illness. I told him about the coughing and spasms that had resulted in three bronchoscopies, a tonsillectomy, and treatment with a multitude of inhalers. Curiously, it disappeared as suddenly as it had appeared. “I’m sending you for tests,” he stated as he filled out two prescription blanks full of exams he wanted done. “My first impression is that it might be sarcoidosis.” “Sarcoid what?” I hadn’t heard of that one either.

He prescribed steroid drops every hour, and told me to start the tests immediately. Within a few weeks, I had a biopsy of glands in my neck, and the diagnosis of sarcoidosis was confirmed. I was then seen by a pulmonary specialist who had treated me years earlier for the coughing episodes, and he, working with the retina specialist prescribed a regimen of oral steroids. I was seeing the retina specialist every week; but my vision was improving only slightly. During one exam, I remember the doctor mentioning that I had small cataracts. I got up one morning a few weeks later, and the little vision I had in my right eye had diminished further. My husband came home from work and took me for an examination. The cataract had grown, and now was interfering with what little vision I had. It needed to be removed. “Fine, when can we schedule surgery?” I asked. The doctor paused. “I want you to understand this is not a walk in the park. It’s time you see someone who is an expert in uveitis and can prepare you for this surgery. If not done properly, the results are usually poor. I want you to go to Boston to see Dr. Stephen Foster. Stay here while I call his office.”

Dr. Foster has been taking care of my eyes since that time. He has removed cataracts from both eyes, performed a vitrectomy on my right eye, treated me for macular edema and glaucoma and kept the inflammation from uveitis under control. There are now three volumes to my chart. There have been many ups and downs during this saga, and he has seen me through all the different stages of this disease, treating the symptoms aggressively and never allowing any of them to get out of hand. Today I have excellent vision and my sarcoidosis appears to be in remission. I have taken a leave from my job but am able to participate in most of my other daily activities. In fact, I’m even driving again. I use six different eye drops at various times throughout the day, seven if you count Patanol during allergy season. I am still taking a maintenance dose of Prednisone daily, and several years ago Imuran was added. There are side effects to these medicines, the Prednisone in particular, but weighing those against the loss of vision is no contest.

My gratitude to Dr Foster is never ending, and also to those doctors who got me to him. I live in New Jersey, and return to Boston every six weeks. Yes it’s a hassle, so what? Dr Foster relays information to my primary doctor, as needed. As a result, my primary doctor has been able to manage my general care with full knowledge of the treatment I am receiving at MEEI. Uveitis. Org, particularly the support group section, is invaluable in helping me to understand my disease. Reading other patient’s stories, and talking with them in the waiting room during my visits has relieved the feeling of loneliness and sometimes desperation that comes with the disease.

Dr Foster, in training other ophthalmologists to care for patients with uveitis, is providing an invaluable service. It is frightening to realize that some doctors still do not recognize the disease, and treatment can be delayed until great damage has been done. I have been one of the lucky ones, and to my doctors, especially Dr Foster, I express my heartfelt thanks.

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