Life on hold: the experience of living with neuromyelitis optica

References

• Wingerchuk DM, Hogancamp WF, O’Brien PC, Weinshenker BG. The clinical course of Neuromyelitis Optica (Devic’s Syndrome). Neurology 1999;53:1101–14
   Web of Science ®Google Scholar
• Jacob A, McKeon A, Nakashima I, et al. Current concept of neuromyelitis optica (NMO) and NMO spectrum disorders. J Neurol Neurosurg Psychiatry 2013;84:922–30
   PubMed Web of Science ®Google Scholar
• Lennon VA, Wingerchuk DM, Kryzer TJ, et al. A serum autoantibody marker of neuromyelitis optica: distinction from multiple sclerosis. Lancet 2004;364:2106–12
   PubMed Web of Science ®Google Scholar
• Palace J, Leite I, Nairse A, Vincent A. Interferon Beta treatment in neuromyelitis optica. Arch Neurol 2010;66:1016–17
   Google Scholar
• Jacob A, Hutchinson M, Elsone L, et al. Does natalizumab therapy worsen neuromyelitis optica? Neurology 2012;79:1065–6
   PubMed Web of Science ®Google Scholar
• Jacob A, Panicker J, Lythgoe D, et al. The epidemiology of neuromyelitis optica amongst adults in the Merseyside county of UK. J Neurol 2013;260:2134--7
   Google Scholar
• Asgari N, Lillevang S, Skejoe H, et al. A population-based study of neuromyelitis optica in Caucasians. Neurology 2011;76:1589–95
   PubMed Web of Science ®Google Scholar
• Rivera J, Kurtzke J, Booth V, Corona VT. Characteristics of Devic’s disease (neuromyelitis optica) in Mexico. J Neurol 2008;255:710–15
   PubMed Web of Science ®Google Scholar
• Siritho S, Nakashima I, Takahashi T, et al. AQP4 antibody-positive Thai cases: clinical features and diagnostic problems. Neurology 2011;77:736–42
   Web of Science ®Google Scholar
• Wingerchuk DM, Weinshenker BG. Neuromyelitis optica: clinical predictors of a relapsing course and survival. Neurology 2003;60:848–53
   PubMed Web of Science ®Google Scholar
• Palace J, Leite I, Jacob A. A practical guide to the treatment of neuromyelitis optica. Pract Neurol 2012;12:209–14
   PubMedGoogle Scholar
• Collongues N, De Seze J. Current and future treatment approaches for neuromyelitis optica. Ther Adv Neurol Disord 2011;4:111–21
   PubMedGoogle Scholar
• Kanamori Y, Nakashima I, Takai Y, et al. Pain in neuromyelitis optica and its effect on quality of life: a cross-sectional study. Neurology 2011;77:652–8
   PubMed Web of Science ®Google Scholar
• Elsone L, Townsend T, Mutch K, et al. Neuropathic pruritus (itch) in neuromyelitis optica. Mult Scler 2012;19:475–9
   PubMed Web of Science ®Google Scholar
• Kim SM, Go MJ, Sung JJ, et al. Painful tonic spasm in neuromyelitis optica: incidence, diagnostic and clinical characteristics. Arch Neurol 2012;69:1026–31
   PubMed Web of Science ®Google Scholar
• Miller CM. The lived experience of relapsing Multiple Sclerosis: a phenomenological study. J Neurosci Nurs 1997;29:294–304
   PubMedGoogle Scholar
• Boeje H. A purposeful approach to the constant comparative method in the analysis of qualitative interviews. Qual Quant 2002;36:391–409
   Web of Science ®Google Scholar
• Ritchie J, Lewis J. Qualitative research practice. A guide for social science students and researchers. London: Sage; 2007
   Google Scholar
• Squire R. Living well with rheumatoid arthritis. Musculoskeletal Care 2012;10:127–34
   PubMedGoogle Scholar
• Mozo-Dutton L, Simpson J, Boot J. MS and me: exploring the impact of multiple sclerosis on perceptions of self. Disabil Rehabil 2012;34:1208–17
   PubMed Web of Science ®Google Scholar
• Menzin J, Caon C, Nichols C, et al. Narrative review of the literature on adherence to disease-modifying therapies among patients with multiple sclerosis. J Manag Care Pharm 2013;19:S24–40
   PubMed Web of Science ®Google Scholar
• Coulter A, Ellins J. Effectiveness of strategies for informing, educating and involving patients. BMJ 2007;335:24–7
   PubMed Web of Science ®Google Scholar
• De Broe S, Christopher F, Waugh N. The role of specialist nurses in multiple sclerosis: a rapid and systematic review. Health Technol Assess 2001;5:1–52
   Google Scholar
• Hepworth M, Harrison J. A survey of the information needs of people with Multiple Sclerosis. Health Inform J 2004;10:49–69
   Google Scholar
• Malcomson KS, Lowe-Strong AS, Dunwoody L. What can we learn from the personal insights of individuals living and coping with multiple sclerosis? Disabil Rehabil 2008;30:662–74
   PubMed Web of Science ®Google Scholar
• Jannings W, Pryor J. The experiences and needs of persons with spinal cord injury who can walk. Disabil Rehabil 2012;34:1820–26
   PubMed Web of Science ®Google Scholar
• Kennedy P, Rogers BA. Anxiety and depression after spinal cord injury: a longitudinal analysis. Arch Phy Med Rehabil 2000;81:932–7
   PubMed Web of Science ®Google Scholar
• Nicholls E, Lehan T, Plaza SL, et al. Factors influencing acceptance of disability in individuals with spinal cord injury in Neiva, Columbia, South America. Disabil Rehabil 2012;34:1082–8
   PubMed Web of Science ®Google Scholar
• Weitzner E, Sarca S, Wiese S, et al. Getting on with life: positive experiences of living with a spinal cord injury. Qual Health Res 2011;21:1455–68
   PubMed Web of Science ®Google Scholar
• Nyman S, Dibb B, Victor C. Emotional well-being and adjustment to vision loss in later life: a meta-synthesis of qualitative studies. Disabil Rehabil 2012;34:971–81
   PubMed Web of Science ®Google Scholar
• Sharpe L, Curran L. Understanding the process of adjustment to illness. Soc Sci Med 2006;62:1153–66
   PubMed Web of Science ®Google Scholar
• Baker LM. Sense making in multiple sclerosis: the information needs of people during an acute exacerbation. Qual Health Res 1998;8:106–20
   PubMed Web of Science ®Google Scholar