- CASE FILE
I was told that I may have NMO. Treatment has included regular infusions with rituximab, but my condition has continued to deteriorate.
ABOUT THIS CASE FILE
My name is Patty. I am a mother and grandmother from WV. In early 2018, I laid down in the afternoon for a nap. When I woke up, I thought that I had had a stroke in my sleep. My left side was paralyzed and I felt extremely weak. While my left side was lifeless, I was so weak that I couldn't use my other side to help me sit up. I couldn't stand up or walk. I couldn't get dressed. I went to an Urgent Care facility, and was told that I needed to go to the ER in the hope of avoiding complete paralysis. When I went to the ER, and they did an MRI of my neck with contrast. The radiologist who read my MRI saw what he called a mass or a lesion and he recommended that I have another MRI with contrast of my brain and full spinal cord. I followed up with my regular doctor so that I could have the second MRI ordered and approved. In the interim, my family doctor set me up with a home health nurse and a physical therapist who both visited me at home, the nurse on a weekly basis and the PT on a tri-weekly basis. I slowly progressed and began to regain feeling, strength, and range of motion with my left side and limbs. When I had the second MRI, I was told by my primary care doctor that it looked like MS. The neurologist wasn't sure, but her PA told me that it looked like I had possibly had mulltiple mini-strokes. They all told me that there were multiple lesions and spots on my brain. I was sent for a lumbar puncture, and based on the results of that test MS was ruled out. I then went to a neurosurgeon who sent me for a third MRI. He told me that he could see multiple lesions and spots on my brain and tears in the surface of my brainstem. He thought based on this that I had an auto-immune disease that mimics MS. He sent me to a second neurologist. The second neurologist reviewed all of my MRIs, and he told me immediately that he could confidently say that he believed I have Neuromyelitis Optica (NMO), which is also called Devic's Disease. He told me there was no cure, but that based on clinical trials he thought I should begin infusions of rituximab. That this would hopefully slow the progression of the disease. I have had the rituximab infusions (the most recent one was on August 9th). I take medicines to control the excruciating muscle spasms and cramps that I have daily. Things have continued to progress to the point that my daily activities are very much restricted now. The hardest symptoms to deal with are the brain fog, memory issues, chronic pain, loss of equilibrium, deteroriating eyesight and increasing weakness in my legs that makes it more and more difficult to walk. I also haven't been able to drive for over a year now. I have fallen so many times in the past year and a half that I've lost count. I also have spells where I vomit uncontrollably, and am unable to tolerate any food. I deal with urinary and fecal incontinence that varies in severity (sometimes it is very bad, other times it is much more mild). My primary care doctor agrees with some of the things that my neurologist and neurosurgeon have told me, but disagrees with others. I think the main reason he disagrees with the NMO diagnosis is that I tested negative for the NMO IgG autoantibodies, which is also known as Aquaporin-4. My primary care doctor has never tried to stop me from having the rituximab infusions, only suggested that he isn't sure I've been diagnosed correctly. Apparently between 60-90% of NMO patients test positive for this antibody. I don't know if I have NMO, but I do know that I have been having rituximab infusions for nearly a year and that my condition has continued to decline. Whatever I do have, I am certain of two things: it is gravely affecting my nervous system and it is debilitating. I have a 10 month old grandson who I can barely hold because I simply don't have the strength in my arms, and I have another grandchild on the way. I want to be there for my children and grandchildren if at all possible. I have no life anymore. I can't go or be or do much of anything. My children want to see me get better. I want to see me get better, but I feel so hopeless and defeated these days. Please try to help me if you can.