I personally want to thank you for sharing your storys. Your a beautiful young lady that is well beyond you years in knowledge. My father was just diagnosed today with NMO and like you were explaining, effecting his legs not his optical nerves. Thank You, for sharing your story so that I could get a better understanding of the disease.
Im in a relapse of NMO rn currently in the hospital. I too had a weird numbness in my foot but I started going "blind" in my left eye lossing color vision . I have had 5 + MRIs in the last 2 months. I have the Cath in my neck rn and I was very uneasy about it. I could go on and go but thank you for sharing. I have Lupus as well so I've been going through it. Im 27. Living with lupus since 2012. Stay strong and keep and very positive mind set!
Wow I don't know why it took me so long to watch these videos on RUclips on Nmo. My mother was diagnosed in August 2011. She relapse in August the next year and then the next August. After the 2013 attack they gave her medicine to stop the relapses. She hasn't had one in 5 years thank God. Praying for u and everyone else that's going though this. ( don't know the medicine name off hand)
You are an absolute champion!!! It goes to show you that even people who are in the profession DO Not understand NMO the discomforts and the unpredictable nature of this far out condition. My prayers are with you. I Too have NMO (one of two in my country) and it its not a pleasant journey (tingles, shocks, pain, twitching, fatigue, the nausea is our norm but not the normal, and the list goes on) but when people cant understand something it is "unreal", the due care and compassion is not extended. Just hold on, take deep breaths, and enjoy life when you are in remission.
I think especially as a young person realizing that not everyone is healthy, not even young people, is a really big thing. I know it took me a very severe illness at 17 to realize that as well, but I think it gives us young people a strength and resilience that most people don't reach until they're in their 30's. I hope you have a very loving support network around you and that you're doing well today :)
+TheHawki235 Thank you so much! Yes, I never really realized what it was like for people with chronic illnesses until I was experiencing one myself. I hope you are doing well despite your illness and will stay healthy!
Huny thank you for going in to details because it helps me understand better. I was positive on the blood test but I don't have any lesions. I don't know much about the desiese. I would like to know where in your spine are your lesions and what your number was on the blood test. I have been educating my self ever since the test came positive. I did learn that eating a healthy plant based diet with no gluten is helpful. Maybe you can try some of that. Eat a lot of healthy fruits and veggies and probiotics. Thanks so much for your video. Please keep sharing.
Hi, I hope today finds you well and strong. I was diagnosed with recurring NMO in Sept 2016. Like you a had multiple scans, several lumbar punctures, but also had the joy of a brain biopsy operation as my lesions were anomalous even for NMO, so at least you avoided that fun experience. Honestly I Hope you have no further relapses, as they suck. Stay strong, stay healthy, fight hard, fight well, and the best of luck .:D Matty
I have nmo, went blind 3 times. 2 weeks ago my feet began to feel cold, feet/legs/stomach everything was numb but my arms. I can't walk without support. I just had a baby and am not able to hold her. I get funny looks, and laughs as if people think I'm drunk. I've been placed on high dosage of steroids. My whole body is swollen, I feel fat and ugly. I'm so very depressed, and feel like I'm a burden to my family. I know things will get better, but I wish better spirits will show up soon.
I hope you get okay. I have nmo too and I know how depressing it is and how much it sucks. It took away my whole life. I'm sorry for you. Take care babe
+Elvie Zamora Yes, of course. If you ever need to talk, I am always open. :) If you have an Instagram, my insta is perfectlyknitbeauty, and you can just DM me whenever you have any questions or concerns. I'm here to support you! 😊
I was just diagnosed with it. ive been on and off depressed and everything with the throwing up I had too and alot of meds im really scared im very weak too
Hello. Thank you for you video, I was diagnosed with NMO just this week. But, I was misdiagnosed with MS before and been battling for over 4months now. I would also want to ask about your diet? Thanks in advance!! 😊
Stay strong! I'm so sorry you've had to go through all of this! At the time of this video, I wasn't doing much to help with my diet, since my diagnosis was fairly new and I just wasn't aware. Now, I am trying to go gluten and sugar free. I've heard a lot of positive results from people who've limited their use of sugar and gluten. It's supposed to help with getting rid of inflammation and sometimes extra weight from steroids. I hope this information is helpful, and I wish you the best!❤️
Go to Facebook and join the private group with many Patients for every the group is Devic's family _ nmo they discuss alot on there also if you dont know about GJCF go the Www.GuthyjacksonFoundation site an lean alot more about nmo
+Samantha True There are so many people who have reached out to me since I've posted my NMO Journey videos. It is almost reassuring to find people who are going through the same thing and who can understand the same struggles. Stay strong!❤️
Hi, how are you doing? I hope you are better... My wife has NMO and I'd like to ask you a question, did you receive any medicine after the first Plasmaferise? Something like Rituximab? Good bless you, I'm praying for you all
Karen Moureaux Thank you so much for watching! I am on so many medications, but these are the things keeping me from getting any worse: My biggest and most important medicines are currently imuran and prednisone. My spine is what is the most affected by the NMO, so these two medications are the two biggest things that are helping to keep the inflammation down. I also am getting Rituxin infusions every 6 months, which seem to have been helping since I started them after my relapse. I am very sorry to hear about your daughter, and I am praying for strength for both her and your family. I know how difficult this can be, because I experienced it just a few months ago. Know you are not alone and this rough point in time can be overcome. Stay strong!❤️
+Edgy Banana Savannah Thankfully, this disease isn't hereditary. However, we think the Gardasil vaccines may have had something to do with it. I only received one out of the three recommended vaccinations, but I was extremely healthy before we agreed to me getting it. It isn't proven, but it seems to be the only explanation we can think of. Also, a number of NMO Patients also became symptomatic after receiving the Gardasil shot. This disease is still such a mystery, even after researchers have made a lot of progress. I hope this helped answer your question. :)
@Jeremiah Sofi every NMO patient is different, we all suffer different, yes they have some with Respiratory problems , the disease is a mystery we dont know what or how or when we may relaps, usually if you feel in new symptoms let your doctor know, like fir example constant pain, spasming in the limbs, stomach, losing balance, vision , feelings , constant hiccups...ect
![Neuromyelitis Optica (NMO) [Symptoms, Diagnosis, MRI Findings, Treatment, Clinical Trial Results]](http://i.ytimg.com/vi/xBCke5TsDGA/mqdefault.jpg)
I personally want to thank you for sharing your storys. Your a beautiful young lady that is well beyond you years in knowledge. My father was just diagnosed today with NMO and like you were explaining, effecting his legs not his optical nerves. Thank You, for sharing your story so that I could get a better understanding of the disease.
i was diagnosed with NMO 3 days ago at 16 after being a medical mystery for about a month. Thank you so much for sharing your story ❤️
Im in a relapse of NMO rn currently in the hospital. I too had a weird numbness in my foot but I started going "blind" in my left eye lossing color vision . I have had 5 + MRIs in the last 2 months. I have the Cath in my neck rn and I was very uneasy about it. I could go on and go but thank you for sharing. I have Lupus as well so I've been going through it. Im 27. Living with lupus since 2012. Stay strong and keep and very positive mind set!
Wow I don't know why it took me so long to watch these videos on RUclips on Nmo. My mother was diagnosed in August 2011. She relapse in August the next year and then the next August. After the 2013 attack they gave her medicine to stop the relapses. She hasn't had one in 5 years thank God. Praying for u and everyone else that's going though this. ( don't know the medicine name off hand)
wanda j hello, I was recently diagnosed with NMO as well. Do you know what medication your mom had to not relapse in 5 years
What was the medicine
Please what was the medicine
You are an absolute champion!!! It goes to show you that even people who are in the profession DO Not understand NMO the discomforts and the unpredictable nature of this far out condition. My prayers are with you. I Too have NMO (one of two in my country) and it its not a pleasant journey (tingles, shocks, pain, twitching, fatigue, the nausea is our norm but not the normal, and the list goes on) but when people cant understand something it is "unreal", the due care and compassion is not extended. Just hold on, take deep breaths, and enjoy life when you are in remission.
I think especially as a young person realizing that not everyone is healthy, not even young people, is a really big thing. I know it took me a very severe illness at 17 to realize that as well, but I think it gives us young people a strength and resilience that most people don't reach until they're in their 30's. I hope you have a very loving support network around you and that you're doing well today :)
+TheHawki235 Thank you so much! Yes, I never really realized what it was like for people with chronic illnesses until I was experiencing one myself. I hope you are doing well despite your illness and will stay healthy!
I am doing well at the moment thank you! It can get lonely dealing with these things so if you need anyone to talk to just send me a message :)
TheHawki235 Thank you so much! The same goes to you! :)
A friend of mine got diagnosed with NMO thanks so much for your videos. My prayers go out to you and loads of hugs too
Huny thank you for going in to details because it helps me understand better. I was positive on the blood test but I don't have any lesions. I don't know much about the desiese. I would like to know where in your spine are your lesions and what your number was on the blood test. I have been educating my self ever since the test came positive. I did learn that eating a healthy plant based diet with no gluten is helpful. Maybe you can try some of that. Eat a lot of healthy fruits and veggies and probiotics. Thanks so much for your video. Please keep sharing.
Diagnosed 2 years ago with NMO. Blind in left eye. Stay strong!
I diagnosed with NMO . My prayers with you . thank you for your video
Such a strong message and beautifully spoken! It's so true that you never know what someone is going through on the inside. Be kind always 💕
Hi, I hope today finds you well and strong. I was diagnosed with recurring NMO in Sept 2016. Like you a had multiple scans, several lumbar punctures, but also had the joy of a brain biopsy operation as my lesions were anomalous even for NMO, so at least you avoided that fun experience. Honestly I Hope you have no further relapses, as they suck. Stay strong, stay healthy, fight hard, fight well, and the best of luck .:D Matty
+Matthew Cantrill Thank you so much. I hope the same goes for you too.❤️
Thanks you for your sharing it's really helpful to see other people who have NMO and who can help me understand what my sister is living ...
Aw Meg, we are praying for you. Stay strong!!! I think these videos are so inspirational💕💕💕
+Melanie Schaefer Thank you so much, Mel!💕
I'm calling today to donate plasma and playlets... you are an inspiration. Keeping you in my prayers!
+owczarczak26 That is so wonderful! Thank you so much!❤️
aww sweetie! i hope god is with you every step of the way of this NMO.❤️
+elsagirl2003 Thank you so much❤️
I have nmo too..Can you tell how much it take take to recover..
I have nmo, went blind 3 times. 2 weeks ago my feet began to feel cold, feet/legs/stomach everything was numb but my arms. I can't walk without support. I just had a baby and am not able to hold her. I get funny looks, and laughs as if people think I'm drunk. I've been placed on high dosage of steroids. My whole body is swollen, I feel fat and ugly. I'm so very depressed, and feel like I'm a burden to my family. I know things will get better, but I wish better spirits will show up soon.
I hope you get okay. I have nmo too and I know how depressing it is and how much it sucks. It took away my whole life. I'm sorry for you. Take care babe
I cant thank you enough for this videos I just found out I got nmo so I would love to talk to u so I can learn more about it.thank u again
+Elvie Zamora Yes, of course. If you ever need to talk, I am always open. :) If you have an Instagram, my insta is perfectlyknitbeauty, and you can just DM me whenever you have any questions or concerns. I'm here to support you! 😊
Hey, thank you for make this video.. 😊, now I understand what is nmo
live life to the fullest
I was just diagnosed with it. ive been on and off depressed and everything with the throwing up I had too and alot of meds im really scared im very weak too
great message
+Juliana Lim Thank you so much for watching!❤️
Hello. Thank you for you video, I was diagnosed with NMO just this week. But, I was misdiagnosed with MS before and been battling for over 4months now. I would also want to ask about your diet? Thanks in advance!! 😊
Stay strong! I'm so sorry you've had to go through all of this! At the time of this video, I wasn't doing much to help with my diet, since my diagnosis was fairly new and I just wasn't aware. Now, I am trying to go gluten and sugar free. I've heard a lot of positive results from people who've limited their use of sugar and gluten. It's supposed to help with getting rid of inflammation and sometimes extra weight from steroids. I hope this information is helpful, and I wish you the best!❤️
Go to Facebook and join the private group with many Patients for every the group is Devic's family _ nmo they discuss alot on there also if you dont know about GJCF go the Www.GuthyjacksonFoundation site an lean alot more about nmo
How are you now ? How can I reach out to you ?
thanks for sharing.. I have been diagnosed also last February.
+Samantha True There are so many people who have reached out to me since I've posted my NMO Journey videos. It is almost reassuring to find people who are going through the same thing and who can understand the same struggles. Stay strong!❤️
hi Meg!i knw this video is from 2yrs ago,but stil wanna ask on how are you doing now?i hope you are doing better.
Hi, how are you doing? I hope you are better... My wife has NMO and I'd like to ask you a question, did you receive any medicine after the first Plasmaferise? Something like Rituximab? Good bless you, I'm praying for you all
Thanks for doing this video. My daughter was just diagnosed with NMO yesterday. What medications do they have you on?
Karen Moureaux Thank you so much for watching! I am on so many medications, but these are the things keeping me from getting any worse: My biggest and most important medicines are currently imuran and prednisone. My spine is what is the most affected by the NMO, so these two medications are the two biggest things that are helping to keep the inflammation down. I also am getting Rituxin infusions every 6 months, which seem to have been helping since I started them after my relapse. I am very sorry to hear about your daughter, and I am praying for strength for both her and your family. I know how difficult this can be, because I experienced it just a few months ago. Know you are not alone and this rough point in time can be overcome. Stay strong!❤️
@@megwoolf hey so do you had any relapse after having Rituxin?
Is plasma treatment can be done more thn 3-4times safely ??
first hope you feel better love ya♥♥
+Chloe Chandler Thank you!❤️
How can you get NMO or do you just get it? Like cancer or something?
+Edgy Banana Savannah Thankfully, this disease isn't hereditary. However, we think the Gardasil vaccines may have had something to do with it. I only received one out of the three recommended vaccinations, but I was extremely healthy before we agreed to me getting it. It isn't proven, but it seems to be the only explanation we can think of. Also, a number of NMO Patients also became symptomatic after receiving the Gardasil shot. This disease is still such a mystery, even after researchers have made a lot of progress. I hope this helped answer your question. :)
I am recently diagnosed with nmo and taking medicines. I want to know what are the symptoms of relapse??is there any respiration problem?
@Jeremiah Sofi every NMO patient is different, we all suffer different, yes they have some with Respiratory problems , the disease is a mystery we dont know what or how or when we may relaps, usually if you feel in new symptoms let your doctor know, like fir example constant pain, spasming in the limbs, stomach, losing balance, vision , feelings , constant hiccups...ect
How are you now girl?
I have Devic Syndrom. did u ever get plasmapheresis when you were in the hospital.? that helped me.
+Milena V Yes, I had plasmapheresis both times I was in the hospital. I am happy to say that it reversed all of my symptoms.
😕