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Once again the Dr. was pleased with my "progress" today. He did say the disease showed a very small amt. of growth, which led him to wonder about a thresh hold for the Interferon's continued success.
He also brought up my Hydrocephalus. The ventricles in my brain are larger than normal, and the exit for spinal fluid from my brain is smaller than normal. He is concerned about the possible long term affects of this, pressure from inside the ventricles pushing out. So, he is referring me to another neurosurgeon to discuss a shunt. Inside I sighed heavily, wondering if I hadn't been through enough already. Ah! God's gotten me through this adventure so far. Who am I to doubt that He can carry me to the finish? :-)
I asked him about Pegasys, a time released form of Interferon. He said, unless they found some remarkable progress through further studies, he didn't recommend a change at this stage of the game. Makes sense.
I am scheduled for another MRI & abdominal CT scan in mid October. The drama continues........
Posted by walter327 at 3:12 PM 1 comments
Turns out that, now that I've been on Interferon a while, I may be able to reduce the dosage to 1 mil. units 3 times a week. That would mean a huge savings. My last four syringes came in one shipment totalling $1008. It will still cost the same. But, I can stretch out the time between shipments. There are other drugs that may be effective, such as Pegasus. Interferon 2A and 2B are both useful in fighting the disease. So, if one is less costly, I may be able to switch and take us up one level in the poor house.
My Endocrinologist tested my hormone levels, and my testosterone is back up to normal. Funny. I felt that happen. One day it was just like someone flipped a switch on inside me, and I felt much better.
We are losing people to diseases simply due to a lack of funding for research. Just because a disease is rare doesn't mean that person doesn't deserve a decent, fulfilling life. We've lost two people to my disease alone this year. One is too many.
You don't have to donate. But, I would appreciate your reading a bit on my Cause page, or going to www.histio.org . Educating the public on these diseases is very important, too. http://apps.facebook.com/causes/...
Thank you for your time.
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