Hello, my name is Naomi, I'm 49 years old and I live is central Israel.
In 1995 After giving birth to my son I was diagnosed with rectal cancer and had gone through treatment, radiation therapy and surgery.
Between 2000 and 2001 I've began suffering from SCLS but I was not diagnosed with SCLS at the time. My doctors had no Idea what was wrong with me, I was leaking a lot and got a lot of blood donations since they thought that would help but it only got me to leak more and suffer more leakage. I almost doubled in weight and size and couldn’t move from the hospital bed.
after about 2-3 years that I spent most of it in the hospital suffering countless attacks and undergone all kinds of treatment in 2003 I was diagnosed with SCLS. I was treated with theophylline and terbutaline with now success. After a lot of bureaucratic work my doctors put me on thalidomide treatment and my attacks began to vanish.
I was treated with thalidomide for 3 years and then decided to quit the treatment because of its harsh side effects. For 12 years I had no further acute attacks!!
In December 2017, exactly a year ago today I've suffered an acute episode of the disease and couldn’t believe I had to go through this again…I've had excruciating pain in my legs and stomach I had a drop in my blood pressure and was rushed straight to the ICU. My son searched online to see what kind of treatment I should be getting since the doctors had no time for research as they had to keep me alive My son found an article about IVIG, he gave it to the doctors and I was treated with IVIG, Human albumin solution, Hypermagnesemia, ,Magnesium and Potassium.Crystalloid solution
For the past year I've been treated with IVIG 0.4 grams/kg which adds up to 30 grams for my weight. I've had no attacks since. But I have suffered serious allergies a few days after each treatment. Do any of you suffer from allergies after treatment?
I now look for a doctor to look after my case, but most doctors don’t want to deal with something they don’t know. I need to undergo some routine checks…I have a colonoscopy and gastroscopy soon and I was wondering if it is safe to do them?
I'm scared I might have an attack during or after…
I felt alone dealing with this deadly disease and being the only patient in Israel with this disease. I am really glad I found this community. I don’t feel so alone anymore.
Thank you for reading. I wish us all health and happiness.