Volume 4 Issue 1
March 2001
Page 10
| In Their Own Words
In each issue of the newsletter, we will bring you a column that presents the experiences of our members. Their stories are presented In Their Own Words by way of letters they have sent us. We are most appreciative of their willingness to share their very personal stories. It is our hope that through the sharing of these experiences, we will all learn something about each other and about ourselves. It is our hope that the stories will help us all realize that we are not alone. You may submit your stories by sending them either by e-mail or through the postal service to Sandy Siegel. Report on Ana Cristina Gomes dos Santos Recife Brazil 10 July 1999 José Dias dos Santos (Ana Cristina's Father) jose_dias[AT SIGN]uol.com.br
During Carnival 1997, precisely on Monday, 10 February 97, in Condado, PE, Ana Cristina showed symptoms of dengue (acute infectious disease characterized by headaches, severe joint pain, and a rash), that is, high temperature and body aching all over, particularly in the legs. She took some Tylenol and the next day she came to Recife and continued taking the same medication. The following week she returned to work and was even able to participate in a two-day workshop. On Wednesday, 19 February, she felt ill and was taken to the emergency room of the Hospital Memorial São José where she was given Voltaren and subsequently released. She continued taking the medication at home. At about midnight she went to bed but her legs felt heavy (tired legs). The next morning, 20 February, at about 6:00 AM, she tried to get up, but was unable to because her legs did not respond to her efforts. She was immediately taken to Hospital Neuro, where she remained for 18 days. Her stay at that hospital was from 20 February to 8 March 1997. During the first days of her stay in the hospital, the paralysis reached one of the arms and the thorax. She was treated with medication containing corticoids. The paralysis regressed, and remains the same to this day, at the navel level. Since she left the hospital, on 8 March, she continued treatment at home. This treatment involved a psychologist, a nurse's aide, and a physiotherapist, as she was unable to handle her physiological needs on her own. While she was hospitalized at the Neuro, she was subjected to a series of tests aiming to reach a diagnosis for her condition, which to this day has not been determined. After some months without any change in her condition, she was again hospitalized, now at the Hospital Sarah Kubitschek, in Brasília, where she stayed from 21 May to 12 July 97. Again a new series of tests were performed but, unfortunately, the team of neurologists of the hospital were still unable to reach a conclusive diagnosis. With the uncertainty of the diagnosis, we decided to take her to Hospital Santa Isabel in São Paulo, where she stayed from July 14 to 20, 1997. A new series of exams was conducted but, as in the other hospitals, no conclusive diagnosis was reached. In June 1999, Dr. Alex Caetano requested three magnetic resonance images of the different areas affected. After an analysis of the reports, he assured us that what she had was Multiple Sclerosis. He then requested her hospitalization to start treatment with Sygen Monossialotetraexosilgangliosídio-GM1). She stayed at the Hospital Português, in Recife, from 27 July to 10 August 1999. She is still taking Sygen without any positive result so far. The "dance" of the diagnosis started at the Hospital Neuro when it was said that it could be sub-acute viral encephalomyelitis and then that it was possibly transverse myelitis. After that, at the Hospital Sarah Kubitscheck, it was suggested that it might be a case of multiple sclerosis, but this was not a conclusive diagnosis. Then came the team of the Hospital Santa Isabel, which discarded the hypothesis of multiple sclerosis and confirmed the possibility of transverse myelitis. Finally, other neurologists were contacted but the diagnosis is still doubtful. The most recent neurologist seen, Dr. Alex Caetano, says there is no doubt this is a case of multiple sclerosis. Thirty months have elapsed without a firm diagnosis of Ana Cristina's condition. During all this time, she has been hospitalized in three hospitals of recognized standing in this area of medicine. In Recife, she stayed 18 days at the Hospital Neuro. In Brasília, she stayed 45 days at the Hospital Sarah Kubitschek; in São Paulo she was six days at the Hospital Santa Isabel, and in Recife again, another 15 days at the Hospital Português. All hospitals of reputation in this specialization. Following are some of the examinations and tests done during the 30 months of her illness: At Home: At the Hospital Sarah Kubtistchek At the Santa Isabel Neurologists consulted: In Recife: 16 listed THANK YOU!!! |
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