Reply To: Droopy Face!

March 21, 2012 at 4:38 pm

Hi Bny, Honestly with all that you have going on with little kids, job and the uncertainty of the illness, I would probably pursue the mayo option and just get a dx for everything. There are many on the site who went to the one in Minesota. Hopefully someone will come on with more info as to how you can get there. I am pretty sure you can send all of your reords and they review them and get you in, but it can take months, provided they feel your records indicate and appointment. I think if your doc calls a referral of sorts, you can get inquicker. I am not qualified to answer accurately, through our own experience, just based on what my friend told me of their experience.

About the other lady getting the 100grams and the ivig not working as well, based on others that have posted their symptoms progressions, it sounds like the progressive form of cidp not relapse remmit. The ivig only holds more progression, does not allow for a full extinguishing of the demylienation, (inflamatory process) So for lack of a better way to explain it, it is holding the fire, but not putting it out. The people in this catagory usually respond well with immunosuppressants and ivig combo, just the suppressants….. Pam h sometimes checks here, or maybe you can search the archives. She went to Minnesota Mayo AND had the progressive cidp AND did the cytoxan treatment and has had good results. She is helpful to others on the site. It is just a matter of how to contact her on this site. Maybe she is on the facebook site. If willing, I think she would be a great source of help for you.