Some more thoughts …

February 4, 2010 at 9:25 pm

As I read back over the posts and look at dates and times, seems like everything went south when some folks disputed Alice’s use of the word “cured”. I posted on the success forum and won’t repeat everything here, but I am close to Alice and Sophie, and now Jim D. And I cannot find any reason why there are so many objections to Alice using the term “cured” in her success story.

[B]But what is so amazing is that the success Alice is experiencing is getting lost with so much skepticism! Let me repeat that – this IS a success and it IS real and it IS happening right now.[/B]

Here’s what I know:
• I saw Alice before and I saw Alice after – day and night difference!
• Because of her courage and those before her, insurance is starting to pay some of the costs this year
• Last year my insurance included nothing regarding stem cell transplants – this year there is a long list of conditions the insurance will cover
• It might be expensive but it also might be that it is, or soon will be, covered. However, if you don’t ask, you won’t receive
• I’ve done my research, my neurologist is now doing some research and I’ve requested all the paperwork over this procedure to start the process of applying and seeing what my insurance may be willing to cover

I came to the forum to learn. I’ve learned more from Alice than anyone else. [B][U]I have not heard or learned of another treatment, procedure or process that yields the same result as the stem cell transplant. [/U][/B]And I think it is up to each and every reader to sift through whatever is posted here, do further research and have discussions with doctors to reach their own conclusion.

WithHope – I searched through the forum and I see no place listing you as the medical editor, however please feel free to correct me if I’m wrong and show or point me to the place listing your official status. Otherwise, please know that I am intelligent, well read, hold several degrees and have one of the most awesome neurologists around and really believe I can learn what I need to learn through thoughtful research. I do not need you or anyone else to caution or advise or correct anything I read or write on this forum. If/when I ask input, I then hope everyone will be extremely candid with me and provide it. But I don’t remember anyone asking, in the success thread, for “a little word of caution” or for “perspective/information that advises thoughtfulness and a bit of caution with a new approach”.

Rocky36 – And that just makes it even more ironic that you question Jim D by asking “And who are you to deliver to the rest of us facts” while accepting everything WithHope says without question. Jim D is currently undergoing the stem cell transplant procedure – today was harvest day – and so he and Alice both can speak very factually about their process! The facts he stated are correct. And he stated them in relation to his procedure. And after seeing the success Dr Burt’s program is having right now today, I am amused when I see threads like “maybe not in time to help us but …”

Deanop – kudos, you handled this the way I would expect in an open forum, by questioning. You didn’t “caution” and you didn’t rain on a success story by treating the rest of us as if we would blindly jump into this without thought or learning or input from doctors or consideration of costs or whatever … and felt it necessary to provide a lecture of caution because I’m too ignorant to know better! Thank you for asking a question for open comment in the CIDP forum and not the success forum. I appreciate that many responded with words along the lines of “for me it would mean …”. This is the good stuff of the forum.

J.Dennison – I’m with you – this completely derailed the success story as you stated it so eloquently.

Rhomcc – right on!

Hopefully the forum will learn and grow from the dialog this created!