Golnaz Aboutorabian
(Since Golnaz does not speak English as her native language, I have done some editing for her by request. Sam Baar)
You cannot imagine how excited I was to find someone like me on the other side of the world. I am 42 now, and have been diagnosed with SPS for 3 years, while facing the problem since 35. I was sky player, used to play tennis. I had an 11 year-old-son, giving him all possible support
a mother can give her child. Even the time I was afraid of walking and his father was absent, I still was getting him to school and supporting him with different activities.
I was treated by a psychiatrist as a depressed person, but fortunately he was giving me the right medicines i.e. baclofen and diazepam and another anti-anxiety medication. My problem is a somewhat different than others. That is, I don't have diabetes, but thyroid issues.
You never faced jerking? Or you did? I’ve been admitted to hospital in second year of my SP because of worse spasms which caused jerking. A very famous neurologist there told my parents he had never seen such a disease in the whole 40 years of his professional life. He then said
because of the stiffness, I am losing my liver and kidneys. Then he admitted me in ICU, and started to give me morphine. I was there for about three or four days but I just can remember only a few hours of it.
Then my husband who was abroad (in India), studying psychology, came back, and he came to the hospital directly from the airport. I'm quite sure that my problem gets worse whenever I face tension, as that morning, before he came, and I was in a good mood (still in ICU) my sis told
me that he was coming. That day was my 37th birthday, and I believe it was the best gift I'd ever had, but it gave me a big shock. Again jerking started, together with more stiffness and pain (you know).
After I met him, tears were covering my whole face and I was asking him not to cry. But the day after, I begged the doctors to give me permission to stay in the private room as I was sure the best nurse would be my husband.
After a long discussion between my father and head nurse, she accepted. I was there for more than 14-15 days. The neurologist said that it was a virus and now it has left the body!!!!! Yet I was unable to sit because of back spasms. During the next month they were hospitalising me, I had to use a bed-pan, giving me bath only in a bath tub with warm water, and physiotherapy at home. I was (and still am) a very active woman, handling a big market of lubricant in the whole country. So it was really difficult to believe this would be the thing I should adapt to. Then, after a serious phase of my problem, I again asked my psychiatrist to visit me at my home. He again said that your problem is anxiety only and you should start taking related treatments
again. I accepted. Then my husband, after 3 months staying with me, went to India to continue his education. This time I was much better. Even there was no more need for a hospital bed which we had got from a friend. After three months my son and I joined him. I started Yoga treatment. It was really the best decision in my life to move to India, and doing Yoga. After a few months I decreased my medicines, down to zero. And after 11 months from the time I stopped taking medicine, I got pregnant again and now I have a very cute, green eyed Indianson :) Only after three months from delivering, the SPS started to show itself again. I really was worried to whom I should go to this time, because I could not trust doctors anymore. I asked my Yoga guru to treat me at home. But after a few sessions they said they would continue only if I agreed to go to a physician.
I asked my husband to get an appointment from a psychiatrist he knew very well, this time I was bleeding worse than usual, bleeding after I stopped breast feeding. It was more than a month I was bleeding. That time, because we were alone, I hired an Indian lady to take care of me and my son. So I thank God that I had her. Anyway, we hired an ambulance, with stretcher, I went to doctors for both problems. Psychiatrist said he would give me medicine but I should meet with a neurologist. He introduced me to the best he knew. He came, and after a few questions and a physical exam he diagnosed SPS. I was crying, being happy some one knew what this is. After GAD65 test, he said now he is sure about the disease. The number was above 1,000. So he started to give me 25 injections of something like what you call IVIG, only for 5 days. On the third day I was able to raise my leg and put it on the other one. It was a miracle for all of us. It was the only time I got treated with IVIG. Then after getting better, let’s say after a month, I again started Yoga at my place, together with doctor treatment.