As Dee lies in bed, arms and legs wasting away, doctors are scrambling to find the cause They can not find anything in the 17 weeks of testing to confirm a diagnosis. Theories and educated guesses are all we have to go on... but for now, that is enough.
Today we decided that Dee will have 6 months of steroid treatment, infused once a week. This will help to reduce inflammation, try to keep permanent damage as low as possible, and dampen down his immune system to try and slow his body's response to whatever is causing the paralysis. The first 3 months will be at high doses to try and stabilise the paralysis progression. Stop it from getting worse. The second 3 months will be to try to gradually lower the dosage of steroid and to maintain the level of paralysis.
He will also have Cyclophosphamide, a chemo drug, once a month for 6 months, starting sometime this week. The doctor thinks this will have limited success, but he must have tried this one (unsuccessfully) to get infliximab, the one that they actually want to use (funding issues in NZ).
The idea of both of these things is to help with the inflammation and dampen down his immune response to whatever is causing the problems. There is a suspicion that it could be a type of cancer. There are also assumptions that it is high up in his spinal cord (neck area) and causing inflammation around the spinal cord, hence, affecting his limbs. These are all educated guesses. Neurosarcoidosis is a term they have used (among others) to describe this potential cause.
It is all a bit of guess work. They openly admit that they don't know what the cause is or how to treat it, and that it is all a risk. They asked us to make the decision about what drugs to try. To be honest, we have nothing to lose. God will guide us. Keep praying.
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