Thanks for listening.
Dawn, First of all thanks for reading my novella!! At this point all I want is for someone somewhere to tell me what is going on, if this is not CIDP what is it. Hopefully I will be able to stick with the Dr’s I have now long enough for them to figure it out. As for my sister…by the time she got a diagnosis she was so far along that they didn’t expect the IVIG to do much more than stop it from progressing. They told her at mayo that she,even for them, is a challenging case. She is now after 4+ years of IVIG just starting to get some reflexes back …..I at least have her to consult with….I call her when something new pops up and she confirms that I am not crazy and I should tell the Dr’s. I am following her progression exactly and that scares me!!! My big question is what do I need to say to get someone to listen, to consider CIDP (just because I don’t follow the text book example). Obviously what I am saying is not getting through….Kris (my sister) has told Dr Dyke about me and just from what he was told he believes it is CIDP so when she goes to her appointment with him on the 20th she is going to bring him a copy of my records. Hopefully he will look at them and take an interest…my entire family is in Minnesota so if I can get in to Mayo that way if would be very convenient for me to go….even if the military will not cover all of the cost! Anyway, thanks for taking an interest in my story and I appreciate any and all input. Melissa