Reply To: Random questions for those who have CIDP

August 8, 2017 at 5:46 pm

Told I have CIDP after years of weird symptoms and big name doctors not able to figure me out because as with others I don’t have the “book symptoms” and they didn’t want to think outside their box. I can understand them having concerns about naming what is wrong and possibly being wrong but wish they would have tried IVIG much sooner.
I am struggling with the limited strength that I now have. Had two 5 days loads one month apart and one day maintenance one and half weeks ago. Second 5 day had great results but then a family reunion put me back as bad or worse than before treatments started. My doctor was disappointed in the result of being busy but understood the reason and started me on maintanance every three weeks. Balancing a 40-50 hours per week job into 25 hours max and not being able to keep up with normal housework, laundry and walking my two dogs is difficult and a huge life change so suddenly. I am the director of a rescue mission that my husband and I cofounded ten years ago and love my ministry to others on a daily basis. I don’t want to retire but it is difficult to keep up with things not being there.
I have fatigue for about 4 days after treatments and then feel okay for the rest of the time until about three days before the next treatment. Is this typical? Also have more pain throughout my body after treatment. Does this mean it is making my nerves feel more? What speed are you able to do with IVIG? I can not go past 70 without getting a major headache even with steroids and or solmedro RX. Does this get easier? And one last question. Have any of you gone into remission with IVIG and for how long? (I guess that may be considered two questions in one) 😉 Thanks for listening (reading) and future responses.