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!