Here we go again, I am currently hospitalized for the third time in four months, due to falling from being paralyzed to the waist with GBS.

But now I don't think I have GBS, I think I have acute onset CIDP. Here are the bullet points:

2/2/15 - Paralysis to waist, weakness/numbness in arms and legs. Two days of tests, spinal tap confirmed elevated proteins and diagnosed GBS. 5 days of IVIG, sent home making very slow but very steady recovery.

4/12/15 - Back to the hospital, falling and paralyzed to waist, weak/numb hands. Six treatments of plasmapheresis. Incredible progress, left walking completely unassisted and able to drive, get up independently from the floor, etc.

5/18/15 - 9 days after my last plasmapheresis treatment, the tingling started in my feet. Three days later, paralyzed to the waist again, with weakness/numbness in arms and legs as well. Began plasmapheresis again, scheduled for 6 treatments.

Here's where I am at, I again am responding very well to the treatment. After 2 rounds of plasmapheresis I am comfortably walking with a walker, could probably walk without it. Hand strength is almost all the way back, I am able to open my own bottles etc. From my research, here is what I have found over and over in medical articles:

"GBS patients may worsen after initial treatment (treatment-related fluctuation [TRF]). It is difficult to distinguish GBS-TRF from CIDP with acute onset (A-CIDP). A-CIDP should be suspected when a patient with GBS deteriorates after 9 weeks from onset or when deterioration occurs three times or more. Maintenance treatment should then be considered."

SO - my second deterioration was TEN weeks after onset, and I have now deteriorated three times. My neurologist says it's not necessarily CIDP. I want help from all of you correctly diagnosed with CIDP, what are the maintenance treatments I should be advocating for? I cannot keep being hospitalized without use of my legs, and the catheter obliterates my veins so I am not a good candidate for continued rounds of plasmapheresis after this. Thanks to these two rounds there will no longer be right side access to my jugular if I ever need a line in the future. Please - anyone who has been down this road please let me know. I am happy to do maintenance treatment and therapies if it means that I can live my life again. This is my 44th day of being hospitalized this year and I just want to be done with it, but when I try researching details on maintenance treatments I don't come up with any. Please help. Thank you so much!

BB, I think it is a good idea for you to join the CIDP community and repost this to those members. They should be able to help you out. The link to the community is on the Communities list in the righthand column of the Main page of this site.