Well, I've had my second round of rituxan about two months ago, and obviously I wasn't expecting my neuropathy to respond as it didn't the first time, but it would be nice if it didn't keep getting worse so fast.
I have sensorimotor neuropathy, and you've all heard me moaning about all the motor loss in my feet and leg, club feet (who new neuropathy could do that), etc etc.
Well, all I can say is that it is now galloping up my left and dominant hand. My hand is pretty ****ed really (hallo software censor), and my arm has lost so much strength. Well it lost some permanently after that brainstem stroke thingy a couple of years ago, but these days when I walk with my crutches the crutch on that side keeps dragging along the ground coz I don't lift it high enough to clear the ground. And when I use my walker, my arm gets really tired hanging on to my walker handle. My hand is pretty much curling up into a ball because it is so weak, and I am getting the same twist in my hand that I have in my feet. All the same old stuff.
I can't decide whether it has suddenly got much worse, of if the gradual decline has reached that critical point where even I can't ignore it. I have a special glove that helps me uncurl my fingers into a useful position, but there is not much I can do about a floppy arm except just live with it.
I have been waiting since march for a new nerve conduction study. My neuro keeps forgetting to refer me even though it was her idea to do it in the first place. I keep ringing her receptionist to remind her, but got nowhere, so a couple of weeks ago another of my doctors referred me. So now at least I am on the waiting list, but it will still be at least a couple of months before it's done.
Also having some problems with my swallowing since I lost all movement in half my tongue just before rituxan. At least rituxan works for my tongue, so hopefully it won't get any worse until next time my b cells return. Fingers crossed that won't be for a while.
hope you guys are all doing ok and thanks for 'listening' to my moan.
raglet
ixiedust:
I have sensorimotor neuropathy, and you've all heard me moaning about all the motor loss in my feet and leg, club feet (who new neuropathy could do that), etc etc.
Well, all I can say is that it is now galloping up my left and dominant hand. My hand is pretty ****ed really (hallo software censor), and my arm has lost so much strength. Well it lost some permanently after that brainstem stroke thingy a couple of years ago, but these days when I walk with my crutches the crutch on that side keeps dragging along the ground coz I don't lift it high enough to clear the ground. And when I use my walker, my arm gets really tired hanging on to my walker handle. My hand is pretty much curling up into a ball because it is so weak, and I am getting the same twist in my hand that I have in my feet. All the same old stuff.
I can't decide whether it has suddenly got much worse, of if the gradual decline has reached that critical point where even I can't ignore it. I have a special glove that helps me uncurl my fingers into a useful position, but there is not much I can do about a floppy arm except just live with it.
I have been waiting since march for a new nerve conduction study. My neuro keeps forgetting to refer me even though it was her idea to do it in the first place. I keep ringing her receptionist to remind her, but got nowhere, so a couple of weeks ago another of my doctors referred me. So now at least I am on the waiting list, but it will still be at least a couple of months before it's done.
Also having some problems with my swallowing since I lost all movement in half my tongue just before rituxan. At least rituxan works for my tongue, so hopefully it won't get any worse until next time my b cells return. Fingers crossed that won't be for a while.
hope you guys are all doing ok and thanks for 'listening' to my moan.
raglet
ixiedust:
