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:
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:
and miss those stories of yours. 
