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and today (my birthday), amidst a whole bunch of wonderful presents, lupus delivered one of it's own.

For the first time ever, my nerve damage seems to have spread into one of the nerves effecting the large muscles in my leg. THe nerves in my feet are pretty shot, that's old news, but i find it rather horrifying if it starts to affect the nerves in my thigh that I use to actually pick up my leg to walk with it. I guess the reason it has got me really rattled is that with me this nerve damage has never got better, once it hits another area it just starts working away and I gradually loose more and more, but really I quite like being able to move my leg so this rather pisses me off.

The current loss in my upper leg is mild, so I am ok for the moment, it is just depression that this is a new progression for me and as I say, with this sort of damage to date I have never had any improvement, just continued deterioration (sensori-motor axonal neuropathy).

It has also spread into my hands more - well it has been affecting my left (dominant) hand for a while, but it has got much more pronounced lately, but I have been doing a good job at ignoring that. I hate to think of loosing motor function in my hands.

My doc also told me the other day that it is affecting one of the nerves which goes to my larynx, which is why my voice is often husky. I hadn't thought anything of it, my doctor picked it up. Apparently there are two nerves going to the larynx, and just one is affected at the present time.

oh, the other thing that I have at the moment (so the docs tell me) is receptive aphasia, but then that is nothing new. And something else that I have forgotten, but never mind.

Actually despite all this crapology going on around me I had (and am having) a fabulous birthday - went out last night with friends and my daughters to a wonderful resturant and had an absolute ball - much laughter and hilarity and today had lunch with two sisters, then visited a friend who lives around the corner. I have a couple of days off work at the moment, so I plan to enjoy it.

and no, i am not going to the doctor tomorrow, I am going about 1 hr up north to visit another friend who is visiting from down country, and will have a great day with her. There is no real benefit to being poked and prodded tomorrow as compared with being poked and prodded on Monday, so I am not wasting my holiday. I will see the doc after work on Monday, or before work if anything gets worse (i work flexi time, so it fits in around things). I see my neuro at the end of march, and will request more nerve studies to see where stuff is at.

but over all i am very happy, despite lupus. Oh, for my birthday I got a gorgeous new mobile phone (I have been juggling a peronal mobile that is identical to my work mobile, which is just impossible), a halerious new cross stitch from my daughter who knows my tastes in such things, and a bunch of other stuff. But mostly I have just had wonderful time with family and friends, which is the main thing. Oh, and I picked up my new glasses tonight, which mean that I can now see, which is a treat.

somebody just handed me a peanut slab and a glass of wine, so I am even happier (don't usually eat choc, but it is my birthday so I get to break all the rules).

love to you all

raglet
 

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Hi Raglet,

Sorry to hear about things getting gradually worse for the moment. I'll keep hoping it just stops and leaves you alone!

In the meatime, have a great time for your birthday :)

Katharine
 

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Hi Raglet

What a bummer. I hope you have a wonderful weekend before all the poking and prodding starts. A few days off work and family and good friends around you sounds like the best prescription right now.

HAVE A FABULOUS BIRTHDAY WEEKEND!
:hapbirth: :hapbirth:

LUV N STUFF
JOAN:rose:
 

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raglet, im so sorry you are going through this at the moment. i hope everything gets better soon. i like your attitiude
despite what you are going through right now.


have a wonderful birthday and many many more!



:wishes: :wishes: :birthday: :birthday:



:getwell: :getwell:
 

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Many Happy Returns Raglet!

I'm glad you managed to stay positive and had a good time with family and friends on your Birthday.

Good luck with your Doctor appointment on Monday, let us know how it goes!

Love Lesley
 

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Happy Birthday ~~~~~

Sounds like you got some nice treats and yes, enjoy your day and tomorrow too ~~
:hapbirth:

 

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Happy Birthday Raglet!

Sorry to hear of your troubles, but glad to hear your making the best of it and having a good birthday. Enjoy!

Eric
 

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Raglet,
Happy Birthday!!! I am sorry about what you are going through, but I know you will make the best of it. You always have a great attitude:)
I hope your weekend is fabulous because you deserve it.


Hugs,
Becca
 

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:eek:verhere: One day at time honey, just one day at a time. Tomorrow has not even been born yet, so try not to worry to much about what it might bring, and have fun today!

:birthday: Happy, happy birthday!
 

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Hi Raglet,

Many happy returns on your Birthday.

I agree, take advantage of your time off. The doctor can definitely wait a few days. Maybe these new symptoms will help you get the next round of Rituxan.

Take care,
Lazylegs
 

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Happy Birthday Raglet

Sorry you are having such a naff time at the moment but admire how positive you are about things

Hope you have a great time tomorrow too.

Love and Hugs

Claire:hapbirth: :bday:
 

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Raglet,

You truly are an inspiration to us all!!!

:hapbirth: :hapbirth: :hapbirth: :bday:

Hope you have a fabulous birthday!!!!!!! :wishes: :party:

Zoi
 

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Happy Birthday - eat more chocolate and turn it into a weeklong celebration is what I say :)

I would hope that this bad news about the progression will supply all the reasons they need to get you approved for more Rituxan as it seemed to help you some at least?
 

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Many Happy Returns Raglet!

:birthday:

It always saddens me when you post that you've had some progression but somehow your post had me smiling as you sounded so upbeat and happy! Flaming well good for you and why not!!!!

Hope you have a great weekend - so eat, drink and be merry then deal with the doc on Monday :lol:

hugz,

Pam xxx
 

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Good grief Raglet

I don't know how you do it.

Happy Birthday. I'm glad you've had a good time with friends and you're still poking the health stuff in the eye by getting up and at 'em.

Stay strong, and take good care.

:love: :love: :love:
 

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Have a happy birthday Raglet!
:eleph::woohoo::yahoo::wiggle:

Sending big soft hugs your way.
:hug::hug::hug:

Have a great weekend.

Lyn

 

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Wishing you a very happy birthday raglet. Enjoy it and keep laughing, laughing is a good healer. Enjoy your day,your freinds and family and the presents you get.
:hapbirth:
florie
:rose:



:pixiedust:
 

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Raglet

WISHING YOU A VERY HAPPY BIRTHDAY

Sorry to hear things are not going well for you. Make sure you enjoy your self and have a drink or 2 for me.
 
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