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Posts (6)

Jan 14, 2018 · Looking for info about Devic's Disease / Neuromyelitis Optica (NMO) in Brain & Nervous System

Peace Blessings and joy to you @macdapat, I am the mother of a young active 21-year-old daughter who is what I would say is a survivor of NMO. She has lived with for about 4 years now it has been hell the first 2 years. What we did was go organic as much as possible soap, dish detergent, food, pure fide water, well that was not enough the crying spell mood swing was out of control. Love +Prayer is key !!!!! understanding listening to your son body!!, keep a journal of everything goes back and read it on the regular. Don’t let doctors tell you about your son they don’t know him you do, listen to your son’s want, needs, and feels. If he tells u the med’s make him feel a type of way believes him please my daughters felt. It is ok to change meds to fit him as a person. My daughter still has issues but we not on pills we only go to IVIG every 3-6 months. She is so blessed that she takes care of an active two-year-old almost every day for a living. Please pray pray pray believe listen to your son fight for him.

Nov 6, 2017 · Neuromyelitis optica (NMO) in Just Want to Talk

Well I have a daughter who is NMO last year and she as feels alone she is now eighteen years old she is always in pain but pushes through it.

Nov 6, 2017 · Neuromyelitis optica (NMO) in Just Want to Talk

My daughter take several medications like cyclobenzaprine, sulfamethox/tmp *ds\trimethoprim ,Mycophenolate/Cellcept, Carbamazepine, Polyethylene and infusion with steroids
Sometimes it work but some day she is in continuous pain

Nov 6, 2017 · Neuromyelitis optica (NMO) in Just Want to Talk

Transverse Myelitis maybe the name of your disease if you don’t wear glasses

Nov 6, 2017 · Neuromyelitis optica (NMO) in Just Want to Talk

NMO involves the spine and optica nerves of the eyes. What age are you?

Nov 6, 2017 · Neuromyelitis optica (NMO) in Just Want to Talk

Yes I see this article has a lot of truth. My Zeroniaque Smith has N.M.O. for 4 years January 2018. We did go gluten free almost meat free Zeroniaque took herself off the prescription drug’s she said they made her feel worse. Now 2 years later she on takes the infusions now every 6 months.She has not had a relapses in a year now.