My daughter presented very different. She began hearing things and her left eye began to drift. She started to have conversations with with no one and her words became sounds. Now all this time she is hospitalized in a locked ward with little observation. Her condition became critical and she was put on a ventilator. The doctor did do a spinal tap and then left her in the locked area of the hospital. This was for patients they believed could hurt themselves. She was hospitalized on a Monday and on Friday on a vent and we were flown to the University of Washington in Seattle. Finally she received treatment and has has slowly recovered. She does have a slight drop foot and has a 17 percent deficient in her left eye. So ultimately we were told she had Anti NMDA receptor and NMO. She will continue having infusion every 6 months of rituximab. I do believe the medication name is correct.
I am sorry first of all. I also have this. I am 57 and found out on Jan15,2019. I had flown to S.C. and could not use the bath room the whole trip. I wasn't trying to not go, in fact I was drinking and figured I should stop since I was about to be flying. Well, long story short; I went about 36 hours with out being able to pee. Nothing helped me go, water running, water over myself did not help either as a matter a fact, it hurt when I poured the water on my skin. Not a hurt like OMG, but different. During this 36 hours during the very last part of it before going to ER in an Ambulance, I was looing the ability to stand. My legs were going down and I couldn't control it. I was getting worried about my bladder more so than me not being able to walk well. I was in good health before this happened. I worked out, decent weight. Now I can not loose my extra weight I gain from not being able to go to the bath room normally, I guess. But I am grateful to say, I have not had any more attacks. I do the same infusion too. I no longer have any desire to make love to my husband and this makes me sad. I guess with the that and the only other thing is my extra sensitivity from toes to waist. Going swimming is different now , how, takes me longer to get in the water. Can't just jump in to it. THIS is no joke. I do have mid and lower back pain most of the day every day. I would like to know if you are happy with your doctors in Seattle. I see a Dr. in Portland. I have not found many doctors that know much about it in Vancouver, Wa. I wish your daughter all the best. Sorry that was so long. I think this is the first time I have really spoke in such detail to someone I do not know about this , that also has been touched in some way by this.
@@Jokent16dec63 Absolutely grateful for you being so gracious to share your story and experience. You have been through so much and the recovery is a long process. The doctors at the University of Washington were great and they did a lot of communicating with doctors at the Mayo clinic and received a lot of guidance from them. Since we have been back in Montana she has seen some really good doctors three hours from where we live because the doctors here just didn't feel confident in taking her after being released from UW. The doctors she see in Billings are also reaching out to the Mayo clinic to get further opinions on her case. So it seems the Mayo clinic is the place to use as a resource. Do they have any idea what may have triggered your onset? There are some support groups associated with the Mayo clinic too. This has been a tough diagnosis for her. She has no memory of the last couple of days of being admitted to the hospital. So she doesn't even remember that she had gone to work those last days before going into the hospital. Please keep me updated and take care and stay strong. It is nice to talk with someone who can relate to my daughters story
Can you please share an email id where we can reach you for consultation or advisory? Someone very close to me has been diagnosed with NMOSD. PLEASE!!!!!
Hello, please join our organization at wearesrna.org/join/ to get more information about NMOSD. Membership is completely free. You can also email us at info@wearesrna.org.
Wow! That was awesome, thank you
Great podcast! Very helpful for the patients.
My daughter presented very different. She began hearing things and her left eye began to drift. She started to have conversations with with no one and her words became sounds. Now all this time she is hospitalized in a locked ward with little observation. Her condition became critical and she was put on a ventilator. The doctor did do a spinal tap and then left her in the locked area of the hospital. This was for patients they believed could hurt themselves. She was hospitalized on a Monday and on Friday on a vent and we were flown to the University of Washington in Seattle. Finally she received treatment and has has slowly recovered. She does have a slight drop foot and has a 17 percent deficient in her left eye. So ultimately we were told she had Anti NMDA receptor and NMO. She will continue having infusion every 6 months of rituximab. I do believe the medication name is correct.
I am sorry first of all.
I also have this. I am 57 and found out on Jan15,2019. I had flown to S.C. and could not use the bath room the whole trip. I wasn't trying to not go, in fact I was drinking and figured I should stop since I was about to be flying. Well, long story short; I went about 36 hours with out being able to pee. Nothing helped me go, water running, water over myself did not help either as a matter a fact, it hurt when I poured the water on my skin. Not a hurt like OMG, but different. During this 36 hours during the very last part of it before going to ER in an Ambulance, I was looing the ability to stand. My legs were going down and I couldn't control it. I was getting worried about my bladder more so than me not being able to walk well. I was in good health before this happened. I worked out, decent weight. Now I can not loose my extra weight I gain from not being able to go to the bath room normally, I guess. But I am grateful to say, I have not had any more attacks. I do the same infusion too. I no longer have any desire to make love to my husband and this makes me sad. I guess with the that and the only other thing is my extra sensitivity from toes to waist. Going swimming is different now , how, takes me longer to get in the water. Can't just jump in to it. THIS is no joke. I do have mid and lower back pain most of the day every day. I would like to know if you are happy with your doctors in Seattle. I see a Dr. in Portland. I have not found many doctors that know much about it in Vancouver, Wa.
I wish your daughter all the best. Sorry that was so long. I think this is the first time I have really spoke in such detail to someone I do not know about this , that also has been touched in some way by this.
@@Jokent16dec63 Absolutely grateful for you being so gracious to share your story and experience. You have been through so much and the recovery is a long process. The doctors at the University of Washington were great and they did a lot of communicating with doctors at the Mayo clinic and received a lot of guidance from them. Since we have been back in Montana she has seen some really good doctors three hours from where we live because the doctors here just didn't feel confident in taking her after being released from UW. The doctors she see in Billings are also reaching out to the Mayo clinic to get further opinions on her case. So it seems the Mayo clinic is the place to use as a resource. Do they have any idea what may have triggered your onset? There are some support groups associated with the Mayo clinic too. This has been a tough diagnosis for her. She has no memory of the last couple of days of being admitted to the hospital. So she doesn't even remember that she had gone to work those last days before going into the hospital. Please keep me updated and take care and stay strong. It is nice to talk with someone who can relate to my daughters story
Excelent.. thanks for the initiative, thanks to all that make this possible...
Thank you so much. I now understand so much better.
Great information - thank you!
Could you name the medicine name again?
Can you please share an email id where we can reach you for consultation or advisory? Someone very close to me has been diagnosed with NMOSD. PLEASE!!!!!
Hello, please join our organization at wearesrna.org/join/ to get more information about NMOSD. Membership is completely free. You can also email us at info@wearesrna.org.