Patient Testimonial - T.F.A.S., 2007

There are things I believe we cannot simply keep to ourselves. Everybody should know so as to make the most of our experiences and, above all, know how we fixed what made us suffer. Despite having had multiple sclerosis for 23 years, the remissive form did not bothered me on my daily routine, though I had injuries caused by the periodic crisis. The cane became my great companion as my balance was not so good anymore. My great hope in life was to listen to Dr. Paulo Rogerio Bittencourt, my doctor since the diagnosis, say that the disease had stopped and I might be cured.

The remissive form in 4 years became progressive and, to my despair, I fell twice, once in 2005, when I broke my right ankle and again in 2006, when I broke the femur. Despite the seriousness of the falls, I gave no proper consideration and did not monitor the disease as I should have. Consequently, my neurological conditions were much worse in January 2007. I lost ascending muscle strength up to the upper limbs and started to suffer spasms, my abdominal and hip muscles contracted when flexed. All this caused terrible pain, mainly the chest spasms. I also had anemia and a urinary tract infection... As can be seen, not a good prognosis. I was taking a huge amount of various drugs just to cope with what was happening to me. Then, I decided to do the pre-transplant and headed to Curitiba (I live in Cuiaba, MT). On May 29, 2007, I chose to be treated as an outpatient, staying in a hotel near Unineuro, where the procedure was to take place and where I went to every morning.

I was subjected to a series of tests so as to check all my organs. The urinary infection was treated, the bowels that also were kind of a problem got better with a diet and the anemia improved with proper food. On June 05, 2007, I was given the QT dosage. I was scared, as previous reports had it as certain that I would feel sick to the stomach, but nothing happened. It was as if nothing had been given to me. I was prescribed medication for sickness. I used to drink 4 liters of water every day. After a few days, I started to feel pain in all my bones, but it was bearable, just a pain. The isolation period went very smoothly as my family joined me and helped me fulfill the task at hand as best we could. I ate only cooked food, even for breakfast, and everything went well.

After isolation, everything went back to normal, except for my hair that fell a little at first, but all of it did fall (to improve my looks I bought a wig and sometimes wore bandanas and when I thought of my lost hair, I remembered it was for a good cause). On June 18, I was given a Botox shot, six little bottles, and on July 2, two more, which added to (I had taken six in Cuiaba) a total of 13 ampoules. Meanwhile, I had all the affection and attention the Unineuro staff supported me with, for example, the nurse Eloise (when I left she gave me an “A+”, with a report and everything), Claudinha, a dear physiotherapist who always believed I would walk again, Dr. Paulo Bittencourt (the neurologist who performed the procedure and was present at all times) and all the other members whose names I do not mention but who know they were very important to me.

I returned to Cuiaba and here I am under the care of Dr Anderson Kuntz Grzesiak, a neurologist, and the physiotherapist Sandra da Silva, who is never tired of stretching, walk stimulation, kabat method and others, all with much care not to stress muscles and joints, but to help me walk again. Only 4 months went by and I'm changing the wheelchair for a walking device. I do physiotherapy every day. My mind is totally clear and I am sure I will improve even more. The MRI I did 15 days ago showed the MS stopped!

I thank my husband Jonas, my daughter Denise and my son Rafael, who stopped their lives to take care of me with love and dedication yet to be seen. They were with me in isolation listening to my whipping complaints, taking me to Unineuro for the procedures and back again every day, taking me to the bathroom, changing my clothes and, most of all, fully believed I would recover. I also thank all the other relatives and all my friends who cheered me up. The miracle happened! I will go back to Curitiba at the end of October for an evaluation with Dr. Paulo Bittencourt.

T.F.A.S./2007