Alice just you stay put

February 7, 2010 at 10:53 pm

[QUOTE=alice]Billt– i too had some pretty significant axonal damage according to my emg/ncv’s… i had total foot drop– they hung like dead fish and when i hobbled, i tripped over them in a very drunkard and disabled fashion :rolleyes:

for what it’s worth though, i got pretty much everything back– including the axonal loss which is supposedly irreversible. you just never know… of course i’m still healing and there remains some minor weakness when i push off with my toes– but it is nearly unrecognizable…

while i can’t speak to the expenditure of money– i will say that when i went through the program, sophie and i flew home twice. breaking it up into segments made it seem much shorter in duration and hence more tolerable. the bulk of the program is the 17 day hospitalization at the end. when you are discharged, assuming your counts are cool, you are free to return home… you are asked to do frequent labs at home for a while to make sure your numbers are rising appropriately… i had no problems and have been in normal ranges for some time.

my biggest complication was an early menopause– no matter, at 44 it was due to come in a few years anyway ๐Ÿ˜‰

KatyK– thank you so very much for your supportive post. i fear that such a positive thing got so lost with the chatter– and my only goal was to get the information out so that anyone interested, especially new folks, knew this treatment existed as an excellent option. it’s a personal choice, of course– an elective procedure, no doubt– but no matter what anyone’s opinion of it is, it’s exposure is important. further, since it has been so successful for me and hundreds of others (various autoimmune disorders), i was exceedingly excited to actually get to post under the success story category– oh how i had dreamed of someday being able to do that… when first diagnosed, i painstakingly searched in vain under that category, desperate for hope and found none.

i am not sure why so many buttons got pushed by my use of the word “cure”– and while some of my word choices subsequent to my initial post may have seemed harsh– i still feel the same way and wonder too why those comments and their content angered some… as an aside– all this talk of “complications” seems odd considering that cidp itself is a lifetime of complications, not to mention the effects of the meds needed to [I]keep it at bay[/I]. well, to each their own right? i just want the lurkers and new folks to know that there is another option available that offers a potential cure or, if some prefer, a long term, sustained remission~

also, thank you so much for sending off those letters back then ๐Ÿ™‚ i didn’t know and thank you much!

what a shame we can’t all stick together, rally, shout, publicize, etc… support is a wonderful and necessary thing– but i think knowledge, action and education are even more important. support requires an accompaniment. i felt like screaming from a rooftop but found so few who shared this disease to scream along side me. i realize i am probably going to stir anger again by saying this, but i felt and feel that acceptance and support alone, closely resembles resignation and defeat.

i know i will most likely get pounced on again for what i’ve written. i really don’t mean to offend and truly harbor no ill feelings toward anyone here– not even my strongest critics. i do, however, wish the anger could be directed and channeled into a vigorous fight against the real culprit here[B]: CIDP[/B][/QUOTE]
I keep checking your personal site for updates but haven’t found anything since December. Please don’t bail on the forum. You have not said one offensive word in my opinion. I am thrilled to have scanned through all the threads and read that you are doing well. I will tell the horses as they haven’t had a recent update, and my boss mare, Coppie, will be pleased beyond end . She loves doing healing energy circles. Take care and love to you and Sophie.