I was paralyzed for months and went blind in my left eye... i was eventually a guinea pig for them.... I'm a single mother of multiple kids and have been paralyzed four times.... i honestly want to cry because I've never seen anyone who has nmo too! You are a blessing to me... I'm about to go to the hospital because intense leg pain has now turned into being numb from my knee down on the left leg and my entire thigh numb on the right side.... You have no idea how amazing it is to actually see someone else function with the same issues i have! Thank you!!!!!
Hi minxii mayhem, thanx for sharing, I have also been paralysed, was a paraplegic for a period of time, I had to learn to walk again, interested in connecting with you I’m from NZ
I can understand your story all to well. My first symptoms was in my spine as well. I noticed it when I went to shave my legs. The sensation against my skin was different. I had all my strength and normal functions but noticed my toes and my legs up to my hip were numb. That is when I went to the doctor and went through all the testing eventually leading to an MRI, when I mentioned the vibration down my spine whenever I would look down, which gave me the dx of MS but then soon changed to NMO. Stay strong girl!! I have been 3 years relapse free so far!
+heather reynolds Wow, thank you so much for sharing your story. It's amazing how similar our symptoms and stories are. My antibodies were recently tested again, and everything was negative, which is a really good sign! I'm hoping to be relapse-free like you soon! I wish you only the best!💕
30 days for a diagnosis? Wow you are so fortunate and blessed. Many people with CNS autoimmune diseases endure years of agony and pain before they hit upon a definitive diagnosis and effective treatments. I will keep you in my prayers. 🌈👍
I was diagnosed with NMO 2 years ago - paralysed from the waist down. Had all the symptoms you had! I only had it in the spinal cord when I was diagnosed but I had a relapse 3 weeks ago and lost my vision. I am a 23 year old female - please be careful of any future relapses xx
I was diagnose with NMO 4 yrs ago after giving birth to my last child. I had to stay 12 days in the hospital after giving birth. Hearing you talk about you experience is like hearing my story.i had the same symptoms not able to walk on my own, my left arm become numb...etc. Just a few a days ago I notice I get the NMO hug which feels like someone is bear hugging you and your unable to breathe. I had one relapse now I’m get the Rituxan infusion twice a year to prevent another relapse. It sucks... I see my self as a rare and delicate edition!!! Keep your head up!
I also have it (MOG). It hit me hard and almost affected my breathing system. The good news is that people with MOG have a good chance of never seeing a relapse. There are actually a lot of people suffering from auto immune diseases but are quiet about it.
I am 24 years old and I’m diagnosed with NMO I still can not believe it’s so hard. How do you look so great? You smile something is hard for me to do right now. .
My cousin was diagnosed with this autoimmune disease maybe 20 years ago. It was even more rare then. It took them awhile to diagnose it then. They had no idea what it was for a long time. Unfortunately she didn’t make it and she passed at 16 years old. I decided to research it again and I believe they have made some great advancements in treatment since then
I'm Niamh I'm 15 next week. I've been diagnosed with NMO since the age of 4. I run a support page on Instagram youngpeople_chronicillnesses to support others. I'm so happy you posted tho to help raise awareness
+Niamh Seren You are so strong, thank you for sharing your story! I will definitely check out your page on Instagram. It's people like us who can really impact spreading the word about this terrible disease. Again, thank you so much for sharing... and happy early birthday!❤️
+Megan Waldron Me too. Luckily, they have found different treatments in recent years that have been able to keep symptoms low for a lot of people, including me. I'm optimistic about a cure in the coming years. :)
Have courage , stay strong and I hope a cure will be found soon for everyone that suffers from NMO . This video reminds me why we should be happy with our lives and think that others may have a disease that can deteriorate their health.
+georgoudixxx Thank you so much! Yes, it's crazy to think that an invisible disease can cause so much damage. Even if you can't see the effects on the outside, that doesn't mean there's nothing there. Thank you for the lovely comment! :)
You are welcome! Indeed, invisible diseases and especially those without a cure are the scariest ever. We are used to seeing symptoms, thus considering all " sleeping" diseases non-existent. Once they awaken, though, life can take a huge turn . Science progresses and I think by the end of the decade they will find something- I hope they focus more on diseases like NMO or sclerosis just like they do with cancer and diabetes :)
You are an amazing, talented young woman...so proud to know you! So very proud 💜 thanks for sharing this personal message with all of us. It helps us to understand what's going on. See you soon at the theater, Megan!
I was recently diagnosed with NMO as well. I had a big event last year, but they couldn't figure out what it was that caused it. I got diagnosed with general rhombencephalitis. After relapsing about a month ago Drs finally figured out it was NMO. It's a terrifying feeling, but I am so grateful to have a name to put to this now. Trigeminal neuralgia has been the biggest hurdle this time, but I know an end is in site with this flare up. I'm happy I found this video and all of you who shared your stories.
My story is so similar to yours! I have NMO too. It's been a hard journey but we NMO people are strong. And we can fight it. I was 10 when I first got sick. Since then I've been to the hospital a lot. I pray that all the doctors will find a cure for NMO. I'm currently 14 years old and still have some difficult times but it's ok, because God is always with us and he has a plan for us.
+J.Anna Thank you so much for sharing part of your story! You certainly have been through a lot. Sending you positive vibes and continued healing! Stay strong!❤️
Thank you for sharing your story... I’m also battling with NMO since 2011 & haven’t been able to really talk about it with many people, I’m glad your able too
same here and I was 55 just a month after my bday and bam. It has been 11 months today. I just hope to gain some wonderful news from all of these comments. We have to stay strong , but damn..... Life gets you down, But WE must keep on fighting the fight. I do understand that. Lots of love to all of you wonderful folk with this .
Stay strong, you're gonna come out on top of all of this! You are absolutely incredible, I would never have known that you were suffering from this rare and horrible disease. I have total faith in you!!
Thank you for sharing. My 1st relapse was Feb 7th 2019 and I suddenly loss vision in my right eye..it was like a bug hit my car windshield. I spent a week in the hospital and ultimately was diagnosed with NMO. Im still in debate about the infusion of rituximab but am leaning more to doing so. Its definitely scary losing some of my vision as it hasn't fully recovered and i am now accepting that it is not going to get any better. Super tough deal and its nice to hear another person POV. Although im sad you are so young having to deal i am happy to see your strength. Thanks again for sharing and i wish you well on this new journey.🙏🏽
Hope you to recover soon. In the same year 2019 but in May i lost my vision with my left eye doctors gave me cortosetroid. after 5 months i lost my right eye vision 😔 then i was diagnosed with NMO but after 40 days i had the 3rd attack with same eye .i live in Turkey they never heard about this disease. And they only give me now (imuran ) a medicine to suppress my immunity system , I'm so scared that I'm not taking the right medication 😔
It took me 7 years and traveling to another country in order to get a correct diagnosis for my situation. I had painless sudden vision loss in the right eye and a couple years later it affected the other eye as well. As of today vision is really poor to the point that I cant drive anymore. Other than vision problems my overall health is pretty good. I hope you are doing fine today and blessings for you and anybody dealing with this rare disease.
I lost my vision on my left eye and the ER told me it was my diabetes. I controlled my sugar and was eating right but my right eye starting getting blurry. After extensive test I was diagnosed with NMO. I got my vision back on my right eye but my eye sight on the left is gone. If I would have been diagnosed in time I wouldn't have lost it. I am on oral immunosuppressant pills. Wishing you the best!!
My wife's major symptom was vomiting 1-5 times a day for over 6 weeks and being unable walk straight. She was finally diagnosed with NMO after being turned away by the ER at 3 separate hospitals and her primary Dr as just a stomach bug. They found a huge lesion on her spine and finally admitted her
I’m watching in 2019 and I have NMO, I was diagnosed at age three and I went blind twice, I gained it back only in my right eye. Since I lost my vision at such a young age I don’t remember what it’s like to see normally. So much more happened that it’s too much to write about, sad part is that I don’t remember a lot cause of all the medicine given. Lastly, I have devices and sometimes I feel embarrassed cause I’m usually the only person with serious vision problems, I feel the same way do about being treated no differently and I love art too , I play the viola
You're such a strong, gorgeous and amazing girl, just please stay positive through this and trust me it won't be easy but I know you can do it. I really hope you stay well and I love you.❤️❤️❤️🙏
You are incredibly talented, strong and amazing young lady..You are as beautiful on the inside as you are on the outside. I admire your courage and strength and, for not letting this define who you are as a person. You have a gift... keep reaching for the stars...I know you will do great things!! xoxoxox
Mandy Robertson Thank you for sharing my friend was diagnose recently and i feel so bad cause i dont know much about it and i am very worry for her she is in her 40s you vidro make me feel positive for her.
So 3 years ago I lost vision in my left eye and so the doc prescribed some streoids to deal with my vision problem but I also realised i was slowly losing my abililty to walk. I was confined to a wheelchair for almost 3 months and like you I had several doctors look at me and diagnosed me with N.M.O. I am able to walk and run again and my vision in my left eye is back but not 100%. I still have the tingling in my back and feet and am hoping to go to the chiropractor to see If that'll help. I just hope a cure for N.M.O is found soon and I hope it does not relapse soon.
Hi. A loved one was recently diagnosed with NMO, and is currently unable to walk. Do you mind sharing what your process was to regain mobility in your legs? I'd really appreciate it.
Hey! I know you uploaded this almost 2 years ago but my mum was diagnosed with NMO when she was studying in university and she was forced to quit and lost half her vision in her left eye and only has half vision in her right eye but my mum was a single parent raising me and later having my brother when I was 10. My mother was so strong and I believe you will have a long and beautiful life even with NMO
My granddaughter was diagnosed Thanksgiving 2015 at the age of 15. Her story is EXACTLY like yours. I just look at it like y'all have joined an exclusive club. Her treatment involved steroids at first ,followed by rituximab treatments. She is supposed to have treatments two weeks in a row, twice a year.(Total of 4 per year) She has had an almost 100% recovery from her initial and only attack so far. She had her latest treatment in June and the second treatment scheduled for two weeks later was canceled because her B cell count was effectively zero. It sounds like you have a great support team with you.
I've been getting different tests for 3 years now, my new neurologist is testing for nmo today. The scariest thing was trying to stand up, and not being able too. This is a very helpful video
Get checked for Lyme disease if all test come negative. Took me years to get my answer . Test out of igenix lab in California there top notch and look for the infection unlike cdc required test looking for antibody response that won’t be found if you had Lyme for long time . I have electric shocks along with burning through my entire body including eyes and head . Lyme is the great intimater ! With many painful Nero symptoms when left untreated for years . Good luck
Thank you for this video - it was very helpful to me to hear your story. You are very eloquent and well-spoken. I am facing a NMO diagnosis (initial Dx was MS but I had no brain "spots" on my MRI and my issues are primarily optic nerve and neurological issues affecting my legs.) I am in my 40's and my neurologist thinks I may have had my 1st episode about 6 years ago but I was fine until I lost vision in my right eye about 6 months ago, along with leg, arm and balance issues.
I've only got to talk to you for brief moments during your time at iSTEM, but in those short moments I saw how nice and generous you were to everyone around you. I know you'll stay strong through your journey and I wish the best of luck to you!
You are brave... be proud of your strength of character... keep positive because sometimes others will not know how to say what they feel... but you have a good support base which is great...
Finally, I found someone else with NMO. I was diagnosed in 3rd grade ( I’m in 6th now) I was diagnosed in the hasbro hospital , but now I have to go Massachusetts general hospital to get infusions every 6 months and blood work every 2.
Hey! I am from Germany. My sister has nmo, Too. Can I Contact you to ask you some questions? She has the diagnose since octobre and is 14 years Old. She doesn ''T take it seriously :( maybe we can tell each other everything we know about it. Greetings
mohammad reza MohammadiHello I'm Niamh Neuromyelitis Optica and I own @youngpeople_chronicillnesses a Instagram page that supports and raises awareness of chronic, invisible, terminal, mental illness and disabilities. We are searching for people to take part in our #SpoonieSpotlight feature, a feature used to share the stories of others! If you'd be interested or know anyone that would be please direct message us!
I was with NMO 7.21.2016. I had to go to Mayo in Minnesota for my diagnosis. It took 2 years to get my diagnosis. At age 23, I'm completely blind out of my left eye, and can't see clearly out of my right eye. Color blind in that eye as well. 2 PLEX treatments. LP. Insane amount of MRIs and blood tests. Dr Wineshanker from mayo diagnosed me without a positive test result. Its been scary. But for now things are stable.
A family friend of mine, has a 10 year old son whose symptoms just came on so fast. Hes been in the hospital for 9 days, and they think he has NMO. They are testing him for it but they know it he has an immune disorder
My brother just sent me your video, I got NMO with MOG. There is 2 types of NMO: - AQP4 most for adults and more about the nerval system - MOG childs ans adults and the eyes This disease isn’t really great for me because the treatment (Rituximab) is here to suppress the part of the antibodies but MOG is too blurry, we don’t know if the antibodies MOG are bad or not and now I learned that the only treatment to prevent relapses isn’t working on me, that the disease is now touching my brain and I’m so depressed. I’m 21 and got NMO only 10 monts ago with 3 relapses, I was a miracle because every time my eyes were almost back but not this time, my eyes are blurry, my back is hurting and I can’t take it anymore, I got stings too much time and I lost all hopes. Your video is beautiful and thank you for sharing your experience, it’s making think there is hope but all my dreams will be crushed or not in almost 2h. I really hope that I will be able to have a decent life like all of you
I have the same symptoms but the first one which i had was vision lost in one eye currently i am having the numbness in one side of my body from my head to leg and i have done the examinations too, so still it's not clear that i have NMO or MS. It's the worst feeling a human being can have in their life specially being student in a foreign country far from family.
Hello, I came across your video. I too have NMO, I was diagnosed this year back in February. I am paralyzed from the waist down. I have a good doctor, I too have had plasm apheresis, 5 times as well as high doses of steroids and 6 treatments of chemo. I take prednisone right now, slowly wining off and will have rutaxin every 6 months. I am 45 years old so much older but I wanted to reach out, and tell you to continue to be brave. I am taking physical therapy working on my legs looking forward to walking again.
+Samantha True Thank you so much for sharing your story. I wish you only the best, and I really hope these treatments begin working to help you. I have just started on Rituxin treatments as well, and I've heard a lot of positive feedback from NMO patients having used it. Thank you again for reaching out. Stay strong!
Samantha True Hello I'm Niamh Neuromyelitis Optica and I own @youngpeople_chronicillnesses a Instagram page that supports and raises awareness of chronic, invisible, terminal, mental illness and disabilities. We are searching for people to take part in our #SpoonieSpotlight feature, a feature used to share the stories of others! If you'd be interested or know anyone that would be please direct message us!
I am rashmi from india today I became 16 year old i have been diagonosed with nmo since 2015 I got two times loss vision in right eye and one time in left eye but recovered completely by asteroids but this year 2019 I got parapharesis in which my both legs stop working and bladder was also affected. But this relapse yet I was taking Azoran 50 since 2016. Actually this time I got a big attack I was admitted in AIIMS for 20 days where I starts improving after 5 cycles of plasmapharesis. My legs start moving and now I am able to walk again after that I took 4 dose of rituximab injection which was really so heavy dose as one time It reacts on my body.. But after slowing its speed 50mg per hour with pre medications I was able to handle it.. And now I just want to defeat this completely #firmfaithtofight against neuromyletis optica.
I was diagnosed after a car accident back in 2003 and I’m 24 now but I don’t know anyone else with this disease so I thank you for your video and I would love to talk to you
I just found out I got this disease. thank you so much for this video u are a blessing it's like u know me its feel good to do there's someone out there knows what I'm going thru.
I was diagnosed with NMO back in December 2015 and I went blind in my right eye. It's permanent vision loss and it's been tough. I'm also a visual artist and it's been hard to do what I love. I hope you find the right treatment. Are you on any immunosuppresents now after your diagnoses? If so which ones?
babyjjnels Hello I'm Niamh Neuromyelitis Optica and I own @youngpeople_chronicillnesses a Instagram page that supports and raises awareness of chronic, invisible, terminal, mental illness and disabilities. We are searching for people to take part in our #SpoonieSpotlight feature, a feature used to share the stories of others! If you'd be interested or know anyone that would be please direct message us!
+Mathild 1 Aww, thank you. Thankfully, I am a lot more stable now then I was then. It was still a very scary experience. Thank you for watching my video and hearing my story. I really appreciate it.❤
thanx for sharing your story well it's quite similar to mine and it helped me a lot cause I was suspicious about being diagnosed with NMO without optical or vision problems I hope they'll find a cure someday specially that I have stem cells from my daughter . trying to keep optimistic. but am scared from the future? will be paralysed or will I die young? it's scary. ...
Thank you so much for sharing your story... I really wish you well in recovery/coping with NMO. You have an amazing attitude for a young lady. I was diagnosed in February this year, was in hospital for 3 months. I'm left with no sensation in my legs, bowel and bladder, also I get double vision if I glance left or right. I'm 57... was super fit and healthy before this. I've written about my story here if anyone cares to read it: www.joeblow.co.uk/neuromyelitis-optica/
Hi im from malaysia and im glad that i found your video as i am also one of the nmo's patient. It's been almost a year and a half since i was diagnosed with nmo. Life's hard haha but we just have to stay positive!😁 I hope they find a cure for us. Stay strong 💕
@@neekhadijah7396 hi! doctor suspect chronic gastric sampai tak boleh buang air kecil, kaki lemah and mata kabur. lepas dua tiga hari saya coma dan lumpuh. Alhamdulillah sekarang dah pulih sepenuhnya. Stay strong ya, if theres anythg do not hesitate to share with me! :) ig : @a.rissa
I m also nmo patients. Last 2 year's l m suffering from this disease. Yah I have been taking a treatment but I don't know it's cure or not. R u guy's good,thous was suffering from this? Is this really r not cure? Pls tell me! Can't I nevar will be a mother? This is true.?.. please tell me someone about this.
hello all. .. am attached by the same problem from 2012. In middle am paralysed. now I could walk little. but not a full recovery . I wish to get cured soon but I can't. ... can u all please help me with some answers for the questions which I have in my mind. ........ will nmo be cured? am taking rituximab injection. . will it be helpfull? nd need some reason causing this disease. .. ?
Thanks. I been watching videos and reading, that is how I saw yours. As much as I want to be educated about it, and still very little information. We're in this as much as we can help each other :)
+Selene Fernandez I did the exact same thing. And you're right, there's just so little information. You should check out the Guthy Jackson Charitable Foundation website. They have a lot of great information!
I did. I live in El Paso TX, and I was reading an article about the local university doing research on Multiple Sclerosis, and since I just went back to college, I was thinking about asking to do research on NMO as well.
Selene Fernandez Hello I'm Niamh Neuromyelitis Optica and I own @youngpeople_chronicillnesses a Instagram page that supports and raises awareness of chronic, invisible, terminal, mental illness and disabilities. We are searching for people to take part in our #SpoonieSpotlight feature, a feature used to share the stories of others! If you'd be interested or know anyone that would be please direct message us!
There's a specific test that goes along with NMO, called NMO-IgG, which I tested positive for. My neurologist has told me time and time again that I 100% have NMO and not MS. A lot of MS patients actually are misdiagnosed because the two diseases are so similar (but not similar enough because they need to be treated completely different). I hope this helped answer your question! :)
Hello - your story is very powerful. We'd like to share your story in our Voices of NMO campaign. Can you please email us at info@sumairafoundation.org? Thanks and looking forward to hearing from you!
I would say that Rituximab is effective for a lot of patients, including myself. Obviously it doesn't work for everyone, but I know Rituximab can give pretty positive results when it works. It has helped bring down inflammation and keep severe relapses at bay for me. I hope it goes well for you!❤️
PerfectlyKnitBeauty did your sensation come back and the feeling if the heat go away, im having also urine retention problems.... i hope this will work in all ereas for everyone
Yes, those symptoms were thankfully reversed. My "rescue" treatment, plasmapheresis, reversed the symptoms, and Rituximab is keeping it from coming back.
My GF has this!! She lost 70 percent of her vision. Got her vision back , thank to latest updates and medicines which suppresses and prevents relapses. M really confused. I wanna marry her but i've already experienced pain/hardship while taking care of my father who was diagnosed with a stage 4 liver cancer..... We lost battle to cancer after fighting for 2 years. Me and my family dont have the power to go through the pain of loosing someone you love. What should i do??
I got diagnosed after two yrs when I was 13, that was about 12 urs ago. Meanwhile I have had about 7 attacks. (Eyesight and spinal cord) Difficult but I stay positive bc the medical field has come far compared to ten yrs ago...
How long does its treatment last? Hey I am Poonam From India My treatment has been going on for 5 years but I still do not understand what is happening and how long will it be?
@@poonamjoshi4731 honestly, the treatments go on for the rest of your life, in my case they will. But there are new treatments every year, don't lose hope. Stay positive!
@@xtyj ....I have lost my friends my career due to this disease ....I am from a small city in India There are not that much facilities even doctors here......I have to travel 200 km for treatment ...... Every day I just think when will all this end...... Well how are you now......?
@@poonamjoshi4731 the fact that you lost your friends and career is really sad. Friends should always support you no matter what. Once the doctors find a treatment to stabilise you, you can live a relatively normal life (with adjustments ofcourse). It is how I do it, I am well, I work, I live but at a slower pace and with a lot of adjustments. Don't let NMO smack you down, it is only a small part of who you are...
+Emma McAllister I'm so sorry you have to go through this. I know how difficult first being diagnosed can be. It's hard, but you will notice throughout your journey that you are stronger than you ever thought you were. Hang in there!❤️
hello all. .. am attached by the same problem from 2012. In middle am paralysed. now I could walk little. but not a full recovery . I wish to get cured soon but I can't. ... can u all please help me with some answers for the questions which I have in my mind. ........ will nmo be cured? am taking rituximab injection. . will it be helpfull? nd need some reason causing this disease. .. ?
I was paralyzed for months and went blind in my left eye... i was eventually a guinea pig for them.... I'm a single mother of multiple kids and have been paralyzed four times.... i honestly want to cry because I've never seen anyone who has nmo too! You are a blessing to me... I'm about to go to the hospital because intense leg pain has now turned into being numb from my knee down on the left leg and my entire thigh numb on the right side.... You have no idea how amazing it is to actually see someone else function with the same issues i have! Thank you!!!!!
I am in 4 NMO support groups on facebook, i find it comforting to know I'm not alone in this, its a scary disease
Hi minxii mayhem, thanx for sharing, I have also been paralysed, was a paraplegic for a period of time, I had to learn to walk again, interested in connecting with you I’m from NZ
@@samhenry2369 hey Sam my Instagram is Minxiimayhem :) feel free to message me!
@@minxiimayhem6781 you can friend me on fb Lise Herman
I can understand your story all to well. My first symptoms was in my spine as well. I noticed it when I went to shave my legs. The sensation against my skin was different. I had all my strength and normal functions but noticed my toes and my legs up to my hip were numb. That is when I went to the doctor and went through all the testing eventually leading to an MRI, when I mentioned the vibration down my spine whenever I would look down, which gave me the dx of MS but then soon changed to NMO. Stay strong girl!! I have been 3 years relapse free so far!
+heather reynolds Wow, thank you so much for sharing your story. It's amazing how similar our symptoms and stories are. My antibodies were recently tested again, and everything was negative, which is a really good sign! I'm hoping to be relapse-free like you soon! I wish you only the best!💕
30 days for a diagnosis? Wow you are so fortunate and blessed. Many people with CNS autoimmune diseases endure years of agony and pain before they hit upon a definitive diagnosis and effective treatments. I will keep you in my prayers. 🌈👍
I was diagnosed with NMO 2 years ago - paralysed from the waist down. Had all the symptoms you had! I only had it in the spinal cord when I was diagnosed but I had a relapse 3 weeks ago and lost my vision. I am a 23 year old female - please be careful of any future relapses xx
I was diagnose with NMO 4 yrs ago after giving birth to my last child. I had to stay 12 days in the hospital after giving birth. Hearing you talk about you experience is like hearing my story.i had the same symptoms not able to walk on my own, my left arm become numb...etc. Just a few a days ago I notice I get the NMO hug which feels like someone is bear hugging you and your unable to breathe. I had one relapse now I’m get the Rituxan infusion twice a year to prevent another relapse. It sucks... I see my self as a rare and delicate edition!!! Keep your head up!
I also have it (MOG). It hit me hard and almost affected my breathing system. The good news is that people with MOG have a good chance of never seeing a relapse.
There are actually a lot of people suffering from auto immune diseases but are quiet about it.
I have it, trying to get used to it. I went blind twice, thanks to steroids, plasma exchange, and infusion therapy my sight is back.
John Levison r u cured completely?
I am 24 years old and I’m diagnosed with NMO I still can not believe it’s so hard. How do you look so great? You smile something is hard for me to do right now. .
My cousin was diagnosed with this autoimmune disease maybe 20 years ago. It was even more rare then. It took them awhile to diagnose it then. They had no idea what it was for a long time. Unfortunately she didn’t make it and she passed at 16 years old. I decided to research it again and I believe they have made some great advancements in treatment since then
I'm Niamh I'm 15 next week. I've been diagnosed with NMO since the age of 4. I run a support page on Instagram youngpeople_chronicillnesses to support others. I'm so happy you posted tho to help raise awareness
+Niamh Seren You are so strong, thank you for sharing your story! I will definitely check out your page on Instagram. It's people like us who can really impact spreading the word about this terrible disease. Again, thank you so much for sharing... and happy early birthday!❤️
Niamh Seren i want help my mom is suffering from NMO
I really hope they find a cure for NMO soon!
+Megan Waldron Me too. Luckily, they have found different treatments in recent years that have been able to keep symptoms low for a lot of people, including me. I'm optimistic about a cure in the coming years. :)
Have courage , stay strong and I hope a cure will be found soon for everyone that suffers from NMO . This video reminds me why we should be happy with our lives and think that others may have a disease that can deteriorate their health.
+georgoudixxx Thank you so much! Yes, it's crazy to think that an invisible disease can cause so much damage. Even if you can't see the effects on the outside, that doesn't mean there's nothing there. Thank you for the lovely comment! :)
You are welcome! Indeed, invisible diseases and especially those without a cure are the scariest ever. We are used to seeing symptoms, thus considering all " sleeping" diseases non-existent. Once they awaken, though, life can take a huge turn . Science progresses and I think by the end of the decade they will find something- I hope they focus more on diseases like NMO or sclerosis just like they do with cancer and diabetes :)
You are an amazing, talented young woman...so proud to know you! So very proud 💜 thanks for sharing this personal message with all of us. It helps us to understand what's going on. See you soon at the theater, Megan!
I have nmo too and I am only 10 I have to have blood tests every 3 weeks
Feel for you. After 17 years thinking I had ms nmo is now raising it's head. Hate the ON more than anything. Good luck xx
I was recently diagnosed with NMO as well. I had a big event last year, but they couldn't figure out what it was that caused it. I got diagnosed with general rhombencephalitis. After relapsing about a month ago Drs finally figured out it was NMO. It's a terrifying feeling, but I am so grateful to have a name to put to this now. Trigeminal neuralgia has been the biggest hurdle this time, but I know an end is in site with this flare up. I'm happy I found this video and all of you who shared your stories.
Can u tell me about symptoms please? I have eye pain,redness and trigiminal pain? I have it too,and diagnose yet from doctors here :(
My story is so similar to yours! I have NMO too. It's been a hard journey but we NMO people are strong. And we can fight it. I was 10 when I first got sick. Since then I've been to the hospital a lot. I pray that all the doctors will find a cure for NMO. I'm currently 14 years old and still have some difficult times but it's ok, because God is always with us and he has a plan for us.
+J.Anna Thank you so much for sharing part of your story! You certainly have been through a lot. Sending you positive vibes and continued healing! Stay strong!❤️
Thank you for sharing your story... I’m also battling with NMO since 2011 & haven’t been able to really talk about it with many people, I’m glad your able too
same here and I was 55 just a month after my bday and bam. It has been 11 months today. I just hope to gain some wonderful news from all of these comments. We have to stay strong , but damn..... Life gets you down, But WE must keep on fighting the fight. I do understand that. Lots of love to all of you wonderful folk with this .
Stay strong, you're gonna come out on top of all of this! You are absolutely incredible, I would never have known that you were suffering from this rare and horrible disease. I have total faith in you!!
Thank you for sharing. My 1st relapse was Feb 7th 2019 and I suddenly loss vision in my right eye..it was like a bug hit my car windshield. I spent a week in the hospital and ultimately was diagnosed with NMO. Im still in debate about the infusion of rituximab but am leaning more to doing so. Its definitely scary losing some of my vision as it hasn't fully recovered and i am now accepting that it is not going to get any better. Super tough deal and its nice to hear another person POV. Although im sad you are so young having to deal i am happy to see your strength. Thanks again for sharing and i wish you well on this new journey.🙏🏽
B Davis wish you feel better! From Russia!
Hope you to recover soon. In the same year 2019 but in May i lost my vision with my left eye doctors gave me cortosetroid. after 5 months i lost my right eye vision 😔 then i was diagnosed with NMO but after 40 days i had the 3rd attack with same eye .i live in Turkey they never heard about this disease. And they only give me now (imuran ) a medicine to suppress my immunity system , I'm so scared that I'm not taking the right medication 😔
It took me 7 years and traveling to another country in order to get a correct diagnosis for my situation. I had painless sudden vision loss in the right eye and a couple years later it affected the other eye as well. As of today vision is really poor to the point that I cant drive anymore. Other than vision problems my overall health is pretty good. I hope you are doing fine today and blessings for you and anybody dealing with this rare disease.
I lost my vision on my left eye and the ER told me it was my diabetes. I controlled my sugar and was eating right but my right eye starting getting blurry. After extensive test I was diagnosed with NMO. I got my vision back on my right eye but my eye sight on the left is gone. If I would have been diagnosed in time I wouldn't have lost it. I am on oral immunosuppressant pills. Wishing you the best!!
My wife's major symptom was vomiting 1-5 times a day for over 6 weeks and being unable walk straight. She was finally diagnosed with NMO after being turned away by the ER at 3 separate hospitals and her primary Dr as just a stomach bug. They found a huge lesion on her spine and finally admitted her
I’m watching in 2019 and I have NMO, I was diagnosed at age three and I went blind twice, I gained it back only in my right eye. Since I lost my vision at such a young age I don’t remember what it’s like to see normally. So much more happened that it’s too much to write about, sad part is that I don’t remember a lot cause of all the medicine given. Lastly, I have devices and sometimes I feel embarrassed cause I’m usually the only person with serious vision problems, I feel the same way do about being treated no differently and I love art too , I play the viola
You're such a strong, gorgeous and amazing girl, just please stay positive through this and trust me it won't be easy but I know you can do it. I really hope you stay well and I love you.❤️❤️❤️🙏
Thank you so much!❤️
You are incredibly talented, strong and amazing young lady..You are as beautiful on the inside as you are on the outside. I admire your courage and strength and, for not letting this define who you are as a person. You have a gift... keep reaching for the stars...I know you will do great things!! xoxoxox
Mandy Robertson Thank you for sharing my friend was diagnose recently and i feel so bad cause i dont know much about it and i am very worry for her she is in her 40s you vidro make me feel positive for her.
I am also suffering from NMO
Please pray for me 🙏
Stay strong nutmeg! You are doing amazing! Keep your head high And I am always here if you need it! Love you! ❤️😊
+Sydney Robertson Love you, Syd!❤️
You are a strong and amazing your lady my dear. Thanks for the caption :) Love
So 3 years ago I lost vision in my left eye and so the doc prescribed some streoids to deal with my vision problem but I also realised i was slowly losing my abililty to walk. I was confined to a wheelchair for almost 3 months and like you I had several doctors look at me and diagnosed me with N.M.O. I am able to walk and run again and my vision in my left eye is back but not 100%. I still have the tingling in my back and feet and am hoping to go to the chiropractor to see If that'll help. I just hope a cure for N.M.O is found soon and I hope it does not relapse soon.
Rabby James I believe in this too!!! Keep fighting 💪🏼💪🏼💪🏼
Hi. A loved one was recently diagnosed with NMO, and is currently unable to walk. Do you mind sharing what your process was to regain mobility in your legs? I'd really appreciate it.
Hey! I know you uploaded this almost 2 years ago but my mum was diagnosed with NMO when she was studying in university and she was forced to quit and lost half her vision in her left eye and only has half vision in her right eye but my mum was a single parent raising me and later having my brother when I was 10. My mother was so strong and I believe you will have a long and beautiful life even with NMO
My granddaughter was diagnosed Thanksgiving 2015 at the age of 15. Her story is EXACTLY like yours. I just look at it like y'all have joined an exclusive club. Her treatment involved steroids at first ,followed by rituximab treatments. She is supposed to have treatments two weeks in a row, twice a year.(Total of 4 per year) She has had an almost 100% recovery from her initial and only attack so far. She had her latest treatment in June and the second treatment scheduled for two weeks later was canceled because her B cell count was effectively zero. It sounds like you have a great support team with you.
+Bill Mullen Wow, thank you so much for sharing your granddaughter's story! I wish nothing but the best for her!
I've been getting different tests for 3 years now, my new neurologist is testing for nmo today. The scariest thing was trying to stand up, and not being able too. This is a very helpful video
Get checked for Lyme disease if all test come negative. Took me years to get my answer . Test out of igenix lab in California there top notch and look for the infection unlike cdc required test looking for antibody response that won’t be found if you had Lyme for long time . I have electric shocks along with burning through my entire body including eyes and head . Lyme is the great intimater ! With many painful Nero symptoms when left untreated for years . Good luck
Thank you for this video - it was very helpful to me to hear your story. You are very eloquent and well-spoken. I am facing a NMO diagnosis (initial Dx was MS but I had no brain "spots" on my MRI and my issues are primarily optic nerve and neurological issues affecting my legs.) I am in my 40's and my neurologist thinks I may have had my 1st episode about 6 years ago but I was fine until I lost vision in my right eye about 6 months ago, along with leg, arm and balance issues.
I've only got to talk to you for brief moments during your time at iSTEM, but in those short moments I saw how nice and generous you were to everyone around you. I know you'll stay strong through your journey and I wish the best of luck to you!
+Ben Sulecki Thank you so much, Ben. That really means a lot.
my cowrkers daughter has this, stay strong and positive.
stay strong, stay as healthy as possible. good luck on your journey to cope with this and bigups from germany!
Meg, you are so brave. I am so proud of you. Stay strong!
You are brave... be proud of your strength of character... keep positive because sometimes others will not know how to say what they feel... but you have a good support base which is great...
Stay strong ❤️ by the way the shape of your eyes are so gorgeous!!
+coco chanel Thank you so much!💕
Finally, I found someone else with NMO. I was diagnosed in 3rd grade ( I’m in 6th now) I was diagnosed in the hasbro hospital , but now I have to go Massachusetts general hospital to get infusions every 6 months and blood work every 2.
you can follow my Instagram page @bandarijason I wrote quite a few articles on NMO
i wish i watched your video sooner
i got NMO too
i did the plasma thing😅
but for me the real struggle is the depression that came after i diagnosed
+mohammad reza Mohammadi Stay strong! You are not alone, just keep fighting!
Hey! I am from Germany. My sister has nmo, Too. Can I Contact you to ask you some questions? She has the diagnose since octobre and is 14 years Old. She doesn ''T take it seriously :( maybe we can tell each other everything we know about it. Greetings
mohammad reza MohammadiHello I'm Niamh Neuromyelitis Optica and I own @youngpeople_chronicillnesses a Instagram page that supports and raises awareness of chronic, invisible, terminal, mental illness and disabilities. We are searching for people to take part in our #SpoonieSpotlight feature, a feature used to share the stories of others! If you'd be interested or know anyone that would be please direct message us!
Mohammad M don't b depress I just found out I have it to and we have to stay strong if u ever need to talk hit me up. God bless and stay healthy
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Keep holding up! Your videos are awesome❤️❤️ your in my prayers🙏🏻🙏🏻
I was with NMO 7.21.2016. I had to go to Mayo in Minnesota for my diagnosis. It took 2 years to get my diagnosis. At age 23, I'm completely blind out of my left eye, and can't see clearly out of my right eye. Color blind in that eye as well. 2 PLEX treatments. LP. Insane amount of MRIs and blood tests. Dr Wineshanker from mayo diagnosed me without a positive test result. Its been scary. But for now things are stable.
can you give an update on your NMO - my mom has been diagnosed in the last year and i am worried my email is p3jjohnson@gmail.com
i’m blind out of my left eye too...
You are an amazing, inspirational girl!
You're SOOOO strong!
A family friend of mine, has a 10 year old son whose symptoms just came on so fast. Hes been in the hospital for 9 days, and they think he has NMO. They are testing him for it but they know it he has an immune disorder
My brother just sent me your video, I got NMO with MOG.
There is 2 types of NMO:
- AQP4 most for adults and more about the nerval system
- MOG childs ans adults and the eyes
This disease isn’t really great for me because the treatment (Rituximab) is here to suppress the part of the antibodies but MOG is too blurry, we don’t know if the antibodies MOG are bad or not and now I learned that the only treatment to prevent relapses isn’t working on me, that the disease is now touching my brain and I’m so depressed.
I’m 21 and got NMO only 10 monts ago with 3 relapses, I was a miracle because every time my eyes were almost back but not this time, my eyes are blurry, my back is hurting and I can’t take it anymore, I got stings too much time and I lost all hopes.
Your video is beautiful and thank you for sharing your experience, it’s making think there is hope but all my dreams will be crushed or not in almost 2h. I really hope that I will be able to have a decent life like all of you
Dsep Tristan keep fighting! Believe!!!
I have the same symptoms but the first one which i had was vision lost in one eye currently i am having the numbness in one side of my body from my head to leg and i have done the examinations too, so still it's not clear that i have NMO or MS. It's the worst feeling a human being can have in their life specially being student in a foreign country far from family.
Prayed for you today! Hope you are remaining strong! God bless
Hello,
I came across your video. I too have NMO, I was diagnosed this year back in February. I am paralyzed from the waist down. I have a good doctor, I too have had plasm apheresis, 5 times as well as high doses of steroids and 6 treatments of chemo. I take prednisone right now, slowly wining off and will have rutaxin every 6 months. I am 45 years old so much older but I wanted to reach out, and tell you to continue to be brave. I am taking physical therapy working on my legs looking forward to walking again.
+Samantha True Thank you so much for sharing your story. I wish you only the best, and I really hope these treatments begin working to help you. I have just started on Rituxin treatments as well, and I've heard a lot of positive feedback from NMO patients having used it. Thank you again for reaching out. Stay strong!
Samantha True Hello I'm Niamh Neuromyelitis Optica and I own @youngpeople_chronicillnesses a Instagram page that supports and raises awareness of chronic, invisible, terminal, mental illness and disabilities. We are searching for people to take part in our #SpoonieSpotlight feature, a feature used to share the stories of others! If you'd be interested or know anyone that would be please direct message us!
Hi Thanks for sharing your story, do you have the AQP-4 or the Anti-mog type?
I am rashmi from india today I became 16 year old i have been diagonosed with nmo since 2015 I got two times loss vision in right eye and one time in left eye but recovered completely by asteroids but this year 2019 I got parapharesis in which my both legs stop working and bladder was also affected. But this relapse yet I was taking Azoran 50 since 2016.
Actually this time I got a big attack I was admitted in AIIMS for 20 days where I starts improving after 5 cycles of plasmapharesis. My legs start moving and now I am able to walk again after that I took 4 dose of rituximab injection which was really so heavy dose as one time It reacts on my body..
But after slowing its speed 50mg per hour with pre medications I was able to handle it..
And now I just want to defeat this completely #firmfaithtofight against neuromyletis optica.
Rashmi kumari keep fighting!!!!!
Hi Rashmi, I m from Bangalore, India..my wife also has NMO...can you share your feedback..
I was diagnosed after a car accident back in 2003 and I’m 24 now but I don’t know anyone else with this disease so I thank you for your video and I would love to talk to you
+Rasheka Cobbs Feel free to reach out to me whenever you'd like. I'm always open❤️
PerfectlyKnitBeauty whats the best form of communication for you?
+Rasheka Cobbs My Instagram is @perfectlyknitbeauty if you'd want to DM me.
PerfectlyKnitBeauty unfortunately I don’t have an Instagram account
I just found out I got this disease. thank you so much for this video u are a blessing it's like u know me its feel good to do there's someone out there knows what I'm going thru.
+Elvie Zamora Thank you so much for watching my video. Yes, you are not alone, and we are all in this fight together! Stay strong, and much love❤
I was diagnosed with NMO back in December 2015 and I went blind in my right eye. It's permanent vision loss and it's been tough. I'm also a visual artist and it's been hard to do what I love. I hope you find the right treatment. Are you on any immunosuppresents now after your diagnoses? If so which ones?
babyjjnels Hello I'm Niamh Neuromyelitis Optica and I own @youngpeople_chronicillnesses a Instagram page that supports and raises awareness of chronic, invisible, terminal, mental illness and disabilities. We are searching for people to take part in our #SpoonieSpotlight feature, a feature used to share the stories of others! If you'd be interested or know anyone that would be please direct message us!
you can't imagine how sorry i feel for you. You are so beautiful and i adore you so much.
+Mathild 1 Aww, thank you. Thankfully, I am a lot more stable now then I was then. It was still a very scary experience. Thank you for watching my video and hearing my story. I really appreciate it.❤
thanx for sharing your story well it's quite similar to mine and it helped me a lot cause I was suspicious about being diagnosed with NMO without optical or vision problems I hope they'll find a cure someday specially that I have stem cells from my daughter . trying to keep optimistic.
but am scared from the future? will be paralysed or will I die young?
it's scary. ...
What Happened?
how soon did you walk after treatment? my son is 2 and has just been diagnosed..his vision is slowly returning but the legs are taking a while
just watched this once again. you are amazing.xoxox 💓😘
Thank you so much for sharing your story... I really wish you well in recovery/coping with NMO. You have an amazing attitude for a young lady. I was diagnosed in February this year, was in hospital for 3 months. I'm left with no sensation in my legs, bowel and bladder, also I get double vision if I glance left or right. I'm 57... was super fit and healthy before this. I've written about my story here if anyone cares to read it: www.joeblow.co.uk/neuromyelitis-optica/
Did the plasma exchange help? I'm doing in now at Mayo Clinic.
Hi im from malaysia and im glad that i found your video as i am also one of the nmo's patient. It's been almost a year and a half since i was diagnosed with nmo. Life's hard haha but we just have to stay positive!😁 I hope they find a cure for us. Stay strong 💕
hai sis, ap simptom yg kamu kena ya? saya pun bru dshkn ad nmo, mata kiri ttba kabur
@@neekhadijah7396 hi! doctor suspect chronic gastric sampai tak boleh buang air kecil, kaki lemah and mata kabur. lepas dua tiga hari saya coma dan lumpuh. Alhamdulillah sekarang dah pulih sepenuhnya. Stay strong ya, if theres anythg do not hesitate to share with me! :) ig : @a.rissa
I m also nmo patients. Last 2 year's l m suffering from this disease. Yah I have been taking a treatment but I don't know it's cure or not. R u guy's good,thous was suffering from this? Is this really r not cure? Pls tell me! Can't I nevar will be a mother? This is true.?.. please tell me someone about this.
We all love you, please stay strong
+RandomKoalaLover Thank you so much!❤️
What treatment should be given to my mom because she is having NMO too
hello all. .. am attached by the same problem from 2012. In middle am paralysed. now I could walk little. but not a full recovery . I wish to get cured soon but I can't. ... can u all please help me with some answers for the questions which I have in my mind. ........
will nmo be cured?
am taking rituximab injection. . will it be helpfull?
nd need some reason causing this disease. .. ?
Do they have cure for nmo am diagnosed with it??
I had vision problems and it lasted me for 3 months it’s horrible and I couldn’t feel my legs one time
My sister also has it and she suffers a lot from NMO Attack. don't worry we will discover a Cure. :). We thrive on Pain...
I have NMO too i need your help because my problem started with the leg as well
I was diagnosed with NMO on August 18 2016. It is an emotional process.
+Selene Fernandez Stay strong! You're right, it is an emotional process. If you need anyone to talk to, you can always message me.❤️
Thanks. I been watching videos and reading, that is how I saw yours. As much as I want to be educated about it, and still very little information. We're in this as much as we can help each other :)
+Selene Fernandez I did the exact same thing. And you're right, there's just so little information. You should check out the Guthy Jackson Charitable Foundation website. They have a lot of great information!
I did. I live in El Paso TX, and I was reading an article about the local university doing research on Multiple Sclerosis, and since I just went back to college, I was thinking about asking to do research on NMO as well.
Selene Fernandez Hello I'm Niamh Neuromyelitis Optica and I own @youngpeople_chronicillnesses a Instagram page that supports and raises awareness of chronic, invisible, terminal, mental illness and disabilities. We are searching for people to take part in our #SpoonieSpotlight feature, a feature used to share the stories of others! If you'd be interested or know anyone that would be please direct message us!
I got diagnosed with NMO too.. Since 2015
What are you taking. Were you diagnosed by mri or spinal tap.
Mri and blood test according to my husband neurologist- she just sent out the test.
How did they come to this diagnosis vs multiple sclerosis?
There's a specific test that goes along with NMO, called NMO-IgG, which I tested positive for. My neurologist has told me time and time again that I 100% have NMO and not MS. A lot of MS patients actually are misdiagnosed because the two diseases are so similar (but not similar enough because they need to be treated completely different). I hope this helped answer your question! :)
Good bless you. Don't worry, trust in God.
I have Nmo didn't find out till I ended up in the hospital
Praying for you.
+Carina Hernandez Thank you very much!💕
Always remember God loves you and has a purpose and plan. 😊Never lose hope.
Hello - your story is very powerful. We'd like to share your story in our Voices of NMO campaign. Can you please email us at info@sumairafoundation.org? Thanks and looking forward to hearing from you!
i lost my lovely sister
how effective is rituximab ??? please im gonna start them
and wondering how effective they are i have nmo
I would say that Rituximab is effective for a lot of patients, including myself. Obviously it doesn't work for everyone, but I know Rituximab can give pretty positive results when it works. It has helped bring down inflammation and keep severe relapses at bay for me. I hope it goes well for you!❤️
PerfectlyKnitBeauty did your sensation come back and the feeling if the heat go away, im having also urine retention problems.... i hope this will work in all ereas for everyone
Yes, those symptoms were thankfully reversed. My "rescue" treatment, plasmapheresis, reversed the symptoms, and Rituximab is keeping it from coming back.
PerfectlyKnitBeauty im gonna have the rituximab but they didnt mention any plasma exchange i really hope that this treatment is effective
My GF has this!! She lost 70 percent of her vision. Got her vision back , thank to latest updates and medicines which suppresses and prevents relapses. M really confused. I wanna marry her but i've already experienced pain/hardship while taking care of my father who was diagnosed with a stage 4 liver cancer..... We lost battle to cancer after fighting for 2 years. Me and my family dont have the power to go through the pain of loosing someone you love. What should i do??
which hospital did you go to?
Cleveland Clinic
I feel so happy that u feel lucky but a lot aren't so thanks lucky
What immunosupressive therapy did u have?
I get Rituxin infusions every 4-5 months :)
@@megwoolf how often relaps did u have during this treatment??once a year or once a 2year??thanks for your answer.
@@megwoolf may be rituxan???not rituxin
Natalia Zdonchik I haven’t relapsed since I’ve been on it in over 2 years. And yes, same thing. People write it differently every time I see it
@@megwoolf thanks for share whith your problem,i whish you happiness!!!!hello from Belorus,Minsk.
I suffer with the same thing ☹️
My sister has nmo but it made her blind
I got diagnosed after two yrs when I was 13, that was about 12 urs ago. Meanwhile I have had about 7 attacks. (Eyesight and spinal cord) Difficult but I stay positive bc the medical field has come far compared to ten yrs ago...
How long does its treatment last?
Hey I am Poonam
From India
My treatment has been going on for 5 years but I still do not understand what is happening and how long will it be?
@@poonamjoshi4731 honestly, the treatments go on for the rest of your life, in my case they will. But there are new treatments every year, don't lose hope. Stay positive!
@@xtyj ....I have lost my friends my career due to this disease ....I am from a small city in India
There are not that much facilities even doctors here......I have to travel 200 km for treatment ......
Every day I just think when will all this end......
Well how are you now......?
@@poonamjoshi4731 the fact that you lost your friends and career is really sad. Friends should always support you no matter what. Once the doctors find a treatment to stabilise you, you can live a relatively normal life (with adjustments ofcourse). It is how I do it, I am well, I work, I live but at a slower pace and with a lot of adjustments. Don't let NMO smack you down, it is only a small part of who you are...
diagnosed 2 days ago
+Emma McAllister I'm so sorry you have to go through this. I know how difficult first being diagnosed can be. It's hard, but you will notice throughout your journey that you are stronger than you ever thought you were. Hang in there!❤️
💕💕💕💕
My mom died of NMO a few years ago... :(
You're so beautiful wowsers
hello all. .. am attached by the same problem from 2012. In middle am paralysed. now I could walk little. but not a full recovery . I wish to get cured soon but I can't. ... can u all please help me with some answers for the questions which I have in my mind. ........
will nmo be cured?
am taking rituximab injection. . will it be helpfull?
nd need some reason causing this disease. .. ?