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hi guys

Sorry I haven't been around much - put it down to exhaustion and having way too much to do on the work front - that and having to battle the kids for time on my computer (ehehehe, as if they care) well it has just been easier to veg out on the couch.

Yesterday I had a fabulous trip to the neuro. Some of you will remember that my neuropathy has been getting a lot worse, and I have been loosing a lot more nerve function in my feet and legs - plus the motor loss is now affecting one of my hands.

As usual, my neuro was fabulous, I really am lucky to have her. Actually I pay to see her privately (no insurance), and it is really worth it. I met her in the public (free) health system, but at the moment she is only working privately so I followed her.

Anyway, I was really wanting to do more nerve conduction studies on my legs and arms, and after examining me she suggested it imediately. I already have sensori-motor axonal neuropathy which has shown up in studies of my legs. My neuro said that usually by the time my sort of neuropathy is heading up the legs then it usually starts in the hands as well. The only odd thing is that I have good sensation in my hands, and usually neuropathy starts with sensation change (at least my sort of neuropathy, I have no clues about other sorts - I have permanent numbness and loss of motor function as my main symptoms).

However, looking back I think that in my feet my first symptoms were actually motor loss so it may just be that I am a little weird (who me ??? :lol: ). If the neuropathy doesn't show up in my hands, then she says she would dx dyspraxia as she strongly suspects that it would be damage affecting the messages getting through from my brain to my hand.

I am just left wondering how one person could have apraxia, dyspraxia and of course neuropathy as well ..... hahaha.

Personally I am not fussed which ever it is, basically neither is treatable beyond the treatment I am already receiving (you name it, I've had it, including 3 series of iv cytoxan, rituxan etc etc) so that's that. But I will be really interested to see if my problems with my fingers is the neuropathy. I definitely have previously had neuropathy in my hands (severe neuropathic pain, boy I don't miss those days) but not really any numbness. My numbness when it occurs is always permanent.

I am awaiting a referral for the tests - I am going to have them at the hospital (free) so I may have to wait a bit longer, but my neuro said at the moment the wait time is pretty good. It is also good to keep all my test results up at the hospital, as that is where my main file is. It means that the neuro doing it will be able to compare the new results with my old studies, which are on record there. The tests are done by the same neurologists whether it is private or public, so I save myself a bunch of money getting it done in the public system.

Well, that's my update, hope you guys out there are all doing as well as you can be -


Raglet

:hehe:
 

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Hi Raglet,

It is good to hear from you again and, yes, we do notice when you are not around :) and miss those stories of yours.

Obviously, it's a pain that all this is happening to you, whatever they call it and also a pity that not much can be done but I'm glad you are getting the tests you wanted done.

Hope to hear more from you soon! My kids keep well away from my PC, it is a no go zone!!

Katharine
 

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Wishing you good results with your testing. I know it is important to know which one it is and to even know the damage caused. I am glad that you will have with the same doctor and that they can compare the last results which will be a benefit in itself. You are lucky to have a doctor that is so good to you and helpful. Good luck again.

 

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Good to hear from you again Raglet. How wonderful to have such a great doctor on your side!

I have to say... the computer is one thing I will NOT let DD play with. Now or ever. She'll have to have her own, because I'm having my own - all mine! *lol* She's got a savings account going already, and we put $$ in there that she gets from relatives for her birthday/christmas. Might be nearly enough for a computer when she wants one ;)
 

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Hi Raglet,

Yes we have missed your wit and humour! It sounds like you have a great doc, it is so important to find someone you can trust. Hopefully you won't have to wait too long for the tests and fingers crossed she'll keep an eye on your wait time.

I hope you are still managing to work and get out with the dogs etc. We need more pics of the pooches!

Let us know how you get on.

Hugz,

Pam xxx
 

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Discussion Starter #6
geesh i hate laptops - i sent the pc in today for more RAM plus the sound needs fixing, so i am using my daughters laptop (yes, she does have one, but she thinks it is for homework while MY pc is for tthe internet !) anyway, sorry about the absense of capitals, this silly little keyboard drives me nuts.

insanely tired today - i worked out that i worked 10 hours yesterday which is totally insane for me, well for anyone but it just happened that way. looking forward to the weekend and lots of time on the couch!

i am very lucky having a flexible job that i love so much, but there is so much that i want to do and not enough time to do it all in. trying to squeeze it all into part time hours is pretty insane. oh well, that's life i guess

love to all

raglet
 

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hi Raglet,

You don't mention if you've ever had IVIG for your neuropathy. I don't know if it would help - don't know much about neuropathy (I get IVIG for an immune deficiency). But IVIG is used to treat some types of neuropathy and also to treat neurological symptoms of Lupus.

Sharon
 

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Hi raglet

lovely to hear from you..I was also wondering how you were.

good luck with your tests,I'm glad you have a good doctor!

I sympahise with the computer situation,we have a pc & a laptop & I still have trouble using them due to both my daughters always hoging them!at the moment I'm trying to coax them into taking up some new hobbies :hehe:

raglet you do too much..sounds like you need a holiday!
enjoy your weekend of rest,make the most of it :)

take care..karen x
 

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Hi Raglet

Good to see you again (grr fingers won't type.....) and that you had a great appt with the neuro. (Wish all my appts were that good..:hehe: )

We've had to bite the bullet and get laptops (cheap) for our girls as their courses use PCs more and more. We haven't quite managed to crash the WiFi network yet but 5 accessing the internet simultaneously stretches the hardware to the limit. I suppose the novelty of having their own computers has worn off a bit as we do have some socialising more than we used to. We insist on eating together and having "family" times which keeps them off the net for a while. Seriously, they are all good kids who are fairly intelligent and we have built up trust over the years. We don't get much overstepping the mark these days.

Love Judi xx
 
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