On June 5th I am going to hospital as a day patient for five days to try out a new treatment.
I will be getting an intravenous transfusion of immunoglobulin each day.
I am both excited and scared. I’m excited because I’ve heard that this treatment can be really good. It could make me feel more normal again, perhaps even ease my constant pain. Maybe I’ll be able to walk again. I am scared because it might not work at all, I have one of the rarer conditions that IVIG is used for, I even have one of the rarer types of my condition.* Also, as well as not working, the side effects can be very nasty.
I have lots of forms to fill in about what I can and can’t do and what pain I feel. There is even a form about my feelings and emotions. I have already been assessed physically for what I can and can’t do. After the treatment these assessments will be done again to see how well the treatment has worked. This is necessary because the treatment is expensive and it has to be proven that it works so that I can continue to have it.
It’s not a cure, it’s a treatment. If it works then I will have it every three to four weeks.
Since my new diagnosis in January I’ve been feeling really low. Last year I was positive and believed that I would get better. Then I had the news that I wasn’t going to get better and, in fact, I had a progressive illness that was going to get worse and could be life threatening.
This new treatment has given me hope again. To be pain free for even a week would feel like a miracle. To walk again, even for a short while would be fantastic. My kids would be so happy to have their mum back.
My fingers are tightly crossed that this works.
For the first time this year I feel positive again.
*My condition is Stiff Person Syndrome (SPS), my type is Progressive Encephalomyilitis with Ridigity and Myoclonus (PERM.)