My father was just diagnosed with that but it’s all so confusing. It’s a lot. His symptoms all came within a week and he is paralyzed from chest to feet. Hasn’t affected his eyes. He did 5 treatments of plasma and had been a slow progress now a week after and he feels his abdomen more and a little sensation on one leg. He is on Eculizumab. I feel like I’m not getting answers to my question so I’m resorting to these videos. I just wan to know can he get more plasma and how long does it usually take to see improvements. He has now been hospitalized for over a month, had a tracheotomy and feeding tube put in. Where do we go from here. Should he have receive longer plasma treatment? Where do we go from here? He is a 69 year old Hispanic male and we have no clue why he has this desease.
It's usually steroids then plasma exchange (Plex). I got NMO two years ago at 61 years old and received 10 plasma exchanges at a civilian hospital after steroids through IV at Cincinnati VA. I was then sent to Cleveland VA for rehab as I couldn't walk or feel my right hand. By then I was given oral steroids. I was in all these hospitals for 28 days. After rehab I had to wait a month before they got me on Soliris, the same as your father which I belatedly realized after my very long reply! It took six months before I really felt improvement along with at home rehab for my walking and balance. A year later I was still improving and wasn't using a walker or cane but not feeling as I had prior to NMO. Now, I've just been marveling that I feel almost normal since this summer! It was a long, depressing journey but with much trust in Jesus I was able to overcome. The reassurance of a nurse that I would start to feel better after six months also lifted my spirits. If I were you I'd request more Plex providing his body's up to it. Before they approved Soliris and his medication, along with another one for NMO respiration problems were serious and life expectancy was five years with the disease. The meds your father is on should help him recover quicker than others I think. But, I've never heard of anyone with NMO that needed a tracheotomy and feeding tube. I'm not a medical professional but I've read that others have gone back for more Plex and have switched meds. Unfortunately, some doctors don't know much about NMO so the key is to be proactive and have good communication with his doctors. The problem with NMOSD is that meds don't heal the lesions, just stop further disability. There is hope that someone with NMO can recover the use of their legs, arms, eyesight etc. I was able to walk again although I can't use more than my thumb and index finger on my right hand so please excuse any typos. The electric shocks/spasms that were horrendous were stopped with medication that I've been able to stop since I've never cared for meds. The burning and tingling sensations and skin sensitivity have eased considerably. I'm able to bend down now without feeling uncomfortable and unstable. The vibrating sensation stopped altogether in my legs although I still feel it mildly in my back. Also, the shoulder/neck pain isn't as bad and sometimes barely noticeable. I now only take one medicine, just Soliris. I've long eaten organics, no gluten and sugar although I splurge every once in a while. I feel that walking a lot and my vibration plate for balance have really helped me these past two years. But mostly, because of my improvement, to me, it feels like Soliris did cure many of my issues. Sadly, all of us with NMO will be on some type of meds for the rest of our lives as no one knows why we get NMO. It's a disease I wouldn't wish on my worst enemy! There are many of us who have this rare disease that go to NMO sites for help. There aren't many but one in particular has a forum where you can ask questions (I'm Dee there, short for Darlene) and it's: neuromyelitis-optica.net/ I don't know what state or country you're in but perhaps reach out to groups like Sumaira Foundation, The Guthy-Jackson Charitable Foundation, and Twelve Stones. I wish I had more information for you as I have an idea of how desperate and depressed and worried you must feel. I hope I've been able to help a little. I don't know if you're a Christian and believe and trust in Jesus Christ as I am and do, but you and your father are now in my prayers. I pray that he gets better soon and that you both are strengthened, in Jesus' mighty name, Amen. God bless you and your father and your family. You seem like a wonderful, caring daughter, one that he must be very proud of you.
![Neuromyelitis Optica (NMO) [Symptoms, Diagnosis, MRI Findings, Treatment, Clinical Trial Results]](http://i.ytimg.com/vi/xBCke5TsDGA/mqdefault.jpg)
![Neuromyelitis Optica (NMO) [Symptoms, Diagnosis, MRI Findings, Treatment, Clinical Trial Results]](/img/tr.png)
Please help me sir my mom NMO problem😢
My father was just diagnosed with that but it’s all so confusing. It’s a lot. His symptoms all came within a week and he is paralyzed from chest to feet. Hasn’t affected his eyes. He did 5 treatments of plasma and had been a slow progress now a week after and he feels his abdomen more and a little sensation on one leg. He is on Eculizumab. I feel like I’m not getting answers to my question so I’m resorting to these videos. I just wan to know can he get more plasma and how long does it usually take to see improvements. He has now been hospitalized for over a month, had a tracheotomy and feeding tube put in. Where do we go from here. Should he have receive longer plasma treatment? Where do we go from here? He is a 69 year old Hispanic male and we have no clue why he has this desease.
It's usually steroids then plasma exchange (Plex). I got NMO two years ago at 61 years old and received 10 plasma exchanges at a civilian hospital after steroids through IV at Cincinnati VA. I was then sent to Cleveland VA for rehab as I couldn't walk or feel my right hand. By then I was given oral steroids. I was in all these hospitals for 28 days. After rehab I had to wait a month before they got me on Soliris, the same as your father which I belatedly realized after my very long reply!
It took six months before I really felt improvement along with at home rehab for my walking and balance. A year later I was still improving and wasn't using a walker or cane but not feeling as I had prior to NMO. Now, I've just been marveling that I feel almost normal since this summer! It was a long, depressing journey but with much trust in Jesus I was able to overcome. The reassurance of a nurse that I would start to feel better after six months also lifted my spirits.
If I were you I'd request more Plex providing his body's up to it. Before they approved Soliris and his medication, along with another one for NMO respiration problems were serious and life expectancy was five years with the disease. The meds your father is on should help him recover quicker than others I think. But, I've never heard of anyone with NMO that needed a tracheotomy and feeding tube. I'm not a medical professional but I've read that others have gone back for more Plex and have switched meds. Unfortunately, some doctors don't know much about NMO so the key is to be proactive and have good communication with his doctors.
The problem with NMOSD is that meds don't heal the lesions, just stop further disability. There is hope that someone with NMO can recover the use of their legs, arms, eyesight etc. I was able to walk again although I can't use more than my thumb and index finger on my right hand so please excuse any typos. The electric shocks/spasms that were horrendous were stopped with medication that I've been able to stop since I've never cared for meds. The burning and tingling sensations and skin sensitivity have eased considerably. I'm able to bend down now without feeling uncomfortable and unstable. The vibrating sensation stopped altogether in my legs although I still feel it mildly in my back. Also, the shoulder/neck pain isn't as bad and sometimes barely noticeable.
I now only take one medicine, just Soliris. I've long eaten organics, no gluten and sugar although I splurge every once in a while. I feel that walking a lot and my vibration plate for balance have really helped me these past two years. But mostly, because of my improvement, to me, it feels like Soliris did cure many of my issues. Sadly, all of us with NMO will be on some type of meds for the rest of our lives as no one knows why we get NMO. It's a disease I wouldn't wish on my worst enemy!
There are many of us who have this rare disease that go to NMO sites for help. There aren't many but one in particular has a forum where you can ask questions (I'm Dee there, short for Darlene) and it's:
neuromyelitis-optica.net/
I don't know what state or country you're in but perhaps reach out to groups like Sumaira Foundation, The Guthy-Jackson Charitable Foundation, and Twelve Stones.
I wish I had more information for you as I have an idea of how desperate and depressed and worried you must feel. I hope I've been able to help a little. I don't know if you're a Christian and believe and trust in Jesus Christ as I am and do, but you and your father are now in my prayers. I pray that he gets better soon and that you both are strengthened, in Jesus' mighty name, Amen. God bless you and your father and your family. You seem like a wonderful, caring daughter, one that he must be very proud of you.