Today was my three month check up and my first one since my last infusion of Rituxan. Last Wednesday I got my cell counts and my CD19s are knocked back down to 0% and 0 absolute. YAY! (Thank you Lord for prayers answered.) So, the NMO is under control right now.
Neuro finally gave me the go ahead to start cathing, and I spoke with my nurse who used to be a urology nurse. She agreed with the consensus that after five years, the bladder will not be coming back (Various drugs did not help.) and that continuing to crede could be very harmful in the long term. So tomorrow I call to order catheters.
Neuro wise the right side is still much weaker than the left, but that has been my norm since the first paralysis attack. Will be attempting to switch from Tegretol to Keppra for my paroxysmal tonic spasms, which are primarily on the right side. I hope it works because I live in fear of those damnable things. I've been on Tegretol for five years and it works extremely well, but the neuro thinks that possibly the high dose (1200-1500 mgs per day.) is contributing to the fatigue. I'm sleeping way too much, sometimes falling asleep in the afternoon and not waking up until the next evening. Also doing a sleep study to look for CNS apnea.
Blood pressure was very good and weight is now 121 pounds, which is another blessing as I had dropped eleven pounds during my recent electrolyte imbalance fiasco.
Just wanted to share my good news. All in all a good visit.
Gracie
Neuro finally gave me the go ahead to start cathing, and I spoke with my nurse who used to be a urology nurse. She agreed with the consensus that after five years, the bladder will not be coming back (Various drugs did not help.) and that continuing to crede could be very harmful in the long term. So tomorrow I call to order catheters.
Neuro wise the right side is still much weaker than the left, but that has been my norm since the first paralysis attack. Will be attempting to switch from Tegretol to Keppra for my paroxysmal tonic spasms, which are primarily on the right side. I hope it works because I live in fear of those damnable things. I've been on Tegretol for five years and it works extremely well, but the neuro thinks that possibly the high dose (1200-1500 mgs per day.) is contributing to the fatigue. I'm sleeping way too much, sometimes falling asleep in the afternoon and not waking up until the next evening. Also doing a sleep study to look for CNS apnea.
Blood pressure was very good and weight is now 121 pounds, which is another blessing as I had dropped eleven pounds during my recent electrolyte imbalance fiasco.
Just wanted to share my good news. All in all a good visit.
Gracie
I love to hear stories like yours, that things are looking up!
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