I read the recent AAN guideline update on plasmapheresis in neurologic disorders. [1] The recommendation that "Plasmapheresis should not be offered for chronic progressive or secondary progressive MS (Level A)" is particularly interesting.
In 1991, I was diagnosed with chronic progressive relapsing remitting MS at 20 years old. I had severe relapses that were unresponsive to high-dose cortesteroid treatment alone. These relapses included blindness, paraplegia, vertigo, and an overnight physical collapse into a vegetative state during which I had no control over any conscious physical functions and minimal primary automated physical functions (such as, swallowing, reflexes, etc.).
Plasmapheresis not only healed lesions on my brainstem—evidenced by MRI—but also allowed me to finish graduate school. Twenty years later, plasmapheresis continues to improve my symptoms. When treatments are nearing or delayed, my symptoms become more severe. After treatment, the symptoms are again relieved and I am able to maintain employment despite 20-25 lesions in my brain and 3-5 lesions on my cervical spine.
Secondary progressive MS encompasses a diverse array of disease severity, duration, and onset ages. With all due respect, the AAN has published a Procrustean guideline. The guidelines place people in broad categories.” Criteria for treatment are based on an individual's response to other treatments, disease progression, rate of progression,
and other factors. Decisions regarding plasmapheresis should be considered on an individual basis.
I implore you to rescind your recommendation. I wish to continue working in, living in, and contributing to my community. Please allow this treatment as one of the few options for people who are appropriately determined eligible.
I read the recent AAN guideline update on plasmapheresis in neurologic disorders. [1] The recommendation that "Plasmapheresis should not be offered for chronic progressive or secondary progressive MS (Level A)" is particularly interesting.
In 1991, I was diagnosed with chronic progressive relapsing remitting MS at 20 years old. I had severe relapses that were unresponsive to high-dose cortesteroid treatment alone. These relapses included blindness, paraplegia, vertigo, and an overnight physical collapse into a vegetative state during which I had no control over any conscious physical functions and minimal primary automated physical functions (such as, swallowing, reflexes, etc.).
Plasmapheresis not only healed lesions on my brainstem—evidenced by MRI—but also allowed me to finish graduate school. Twenty years later, plasmapheresis continues to improve my symptoms. When treatments are nearing or delayed, my symptoms become more severe. After treatment, the symptoms are again relieved and I am able to maintain employment despite 20-25 lesions in my brain and 3-5 lesions on my cervical spine.
Secondary progressive MS encompasses a diverse array of disease severity, duration, and onset ages. With all due respect, the AAN has published a Procrustean guideline. The guidelines place people in broad categories.” Criteria for treatment are based on an individual's response to other treatments, disease progression, rate of progression, and other factors. Decisions regarding plasmapheresis should be considered on an individual basis.
I implore you to rescind your recommendation. I wish to continue working in, living in, and contributing to my community. Please allow this treatment as one of the few options for people who are appropriately determined eligible.
Disclosure: The author reports no disclosures.