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Discussion Starter · #1 ·
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


:pixiedust:
 

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Hey Raglet,

I'm sorry to hear that it seems to just continue getting worse. It really is so ........ :wall: you know what I mean.

Sorry, can't say more, certainly can't help much but feel free to moan away, I think you're entitled to!!!

Katharine
 

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Raglet,

I am so sorry your having a tough time.

I did not realize as I am new here how nasty your Lupus was.

It bugs me that you still have not gotten a referral for the EMG study.

Maybe it warrents a phone call?

I have had similar issues as you where certain body parts just decide to stop working.

The latest is a drop foot that I wear a brace for.

The brain tells the foot to lift up but the foot says NOPE and just flops down.:mad::mad::mad:

Vent, rant, moan and groan all you want to.

Your entitled!:wink2:
 

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Dear raglet vi dont blame you for having a moan anyway, if i was uyo i would be too, i hope you get the date this time and soon, fingers crossed will be thinking about you.

it must be so hard, i cant even imagine what you are going through, i know just trying to hold an umberella that hurts me, so god knows how you cope,

raglet you moan anway thats what we all here for to listen and help each other

all the best luv Lin xxxxxxxxxx
 

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Dear Raglet, you don't moan -- you are the least moany, whiny person I've ever encountered. Life is no fair. I bet you already figured that one out for yourself...... I'm sorry it's so hard for you now. I'm amazed that you still have a sense of humor. I would give you strength if I could. As such is not possible, I'll give you good thoughts, prayers, wishes, meditative energy and all the other things one person can "send" another.

Obviously, you have some grand and great purpose in life. My personal belief, made-up and chosen because I find it comforting, is that the more important a person's purpose in life the harder that person's life will be. You must be important, indeed.


Hugs,
Sunny
 

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Discussion Starter · #6 ·
hi Karol

It sounds like we have some similar symptoms. There are a few of us on this board with significant nerve damage.

I have bilateral foot drops for about 10 years, but the club feet have only happened over about the last two. I were braces on my legs which really help, they help with the foot drops plus they keep my feet pointing in the right direction as I have club feet due to nerve damage. Actually I also have a 'club knee' if that is possible - my knee cap has slipped around to the side for some bizzare reason.

I have rung a zillion times about my tests, which no avail. I have nerve conduction studies rather than EMG's, as my muscles are fine but my nerves are shot which means that my muscles don't get the messages to tell them what to do. Grrrrhhh. But, I should be reffered now, as my other doc dictated the referral letter while I was there so I would know that it had been done. YAY !

I also have cerebellar damage which gives me major postural damage (I have to walk tilted forward from the hips to about 45% else I immediately fall over backwards), but that's a whole other story. My CNS problems are pretty sucky really.

cheers

Raglet
 

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Discussion Starter · #7 ·
thanks guys for your ongoing support. I am just back from staying with my mum for a couple of days, which was great. She always spoils me rotten (LOVE that cup of tea in bed in the morning).

love ya all

raglet
 

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Dear Raglet

I am sorry to hear how things are deteriorating. I'm glad you got the referal at last (whatever is wrong with some of these docs !)

Many hugs

Clare
 
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