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Hi Jen,
I have aggressive complex peripheral neuropathy, I don't know a whole lot about it except the symtoms that I personally suffer, which are numbness and pins and needles in both feet and hands and up to my knee on the left side, the pins and needles also affect my upper left arm and my right cheek,
I cannot stand to have anything or anyone touch my feet as they are so hypersensitive, I have constant nerve twitches, and just recently I have started haveing tremours (it looks like parkinsons but it's not) I too have been told that mine is the worst case of PN my neurosurgeon has seen in 15 years. at first they thought I either had another brain tumour or MS it took over 3 months to diagnose. It is never nice to be sick and even worse when there is so little that can be done about it, I wish you lots of luck and pain free days.
I deal with it by telling myself that there is always someone worse off than me," just like you" and I just take one day at a time. some days I can walk and other days I can barley get out of bed (but I force myself) also just like you sometimes it is nice just to have someone to chat too, not to whinge but just to chat. But I always try to stay possitive (it does'nt always work) but I try anyway. If you are anything like me you will look back on other challenges you have had and think well I beat that so somehow I will beat this too.
I guess we have only our feeling and thoughts to fight with and they say what doesn't kill us only makes us stronger lol (I should be superwoman by now) probably you too hey. anyway hope this helps in some way.
regards Bonnie





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