Transverse Myelitis Association
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 the Hospital Neuro:
Liquor Cefalorraqueano (LCR) (20 Feb 97)
Magnetic Resonance of the Spinal cord (21 Feb 97)
Nuclear Magnetic Resonance of the Cranium (24 Feb 97)
Liquor Cefalorraqueano (LCR) (27 Feb 97) - Spinal tap
Electrocerebral Responses Evocate by monocular visual estilmulation with checkboard pattern stimulus (03 Mar 97)
Ultrasound of the urinary tract (5 Mar 97)
Psychological and physiotherapy follow-up

At Home:
Urine Summary (13 Mar 97)
Electrical stimulation of a sensore periferal nerve of the lower members (8 Apr 97)
Urodinamic Avaliation (11 Apr 97)
Urine Summary (28 Apr 97)
Leucogram (30 Apr 97)
Feces Parasitology(7 May 97)
Rotavirus de Fezes (7 May 97)
Microbiology in the urine (7 May 97)
Feces cultures (7 May 97)
Feces parasitology (8 May 97
Psychological and physiotherapy follow-up

At the Hospital Sarah Kubtistchek
Liquor (27 May 97)
Electrocerebral Responses Evocate by monocular visual estilmulation with checkboard pattern stimulus (26 May 97)
Protein electrophoresis (27 May 97)
Three Magnetic Resonances (Jun 97) - Imaging
Blood, Urine, Feces (June 97)
Psychological and physiotherapy follow-up

At the Santa Isabel
Liquor (15 Jul 97)
Magnetic Resonance (16 Jul 97) - Imaging
In Recife
Luetic test (13 Feb 98)
Anti-phospholipide (13 Feb 98)
Anti-cardiolipina (13 Feb 98)
Protein C (13 Feb 98)
Protein S (13 Feb 98)
Prolactina (13 Feb 98)
Lupico antibody(13 Feb 98)
Antitrombina III (13 Feb 98)
Ative Parcial Tromboplastine (13 Feb 98)
T. Bleeding/T. Coagulation (13 Feb 98)
Urea (8 Feb 99)
Creatinine (8 Feb 99)
Potencial Evocado Visual (23 Feb 99)
Liquor (with a study of oligoclonal bands) (23 April 99)
Physiotherapy follow-up
Magnetic resonances (three) (22 Jun 99) - Imaging

Neurologists consulted:

In Recife: 16 listed
In Brasília: 4 listed
In São Paulo: 3 listed

THANK YOU!!!

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