Thank you so much I found your videos at the perfect time. I’ve been really struggling the last year after my first bout of severe optic neuritis.. I went from basically “normal and healthy” 28 with two kids to blind in one eye within a day or two and ended up in a neuro ophthalmologist office when he looked at me and said have you ever heard of devics disease? Umm no?!! He sent me to be admitted to the hospital for steroids and a battery of tests for a week. Vision came back. Sent home without any official diagnosis. Long story short the specialist have been going back and forth between MS and NMO for a whole year and it looks like they are leaning towards NMO and it is scary girl! I feel so alone I barely knew of MS, definitely never heard of NMO or even met anyone that has it.. your videos are definitely inspiring to see I’m not alone in this battle.. ❤️ thank you
You are not alone! We have similar situations and honestly if I'm alive and talking about it, you will be FINE! yes its very hard but we have to be strong. find me on FB &IG. :) Thank you watching, that is my goal to help others :)
Hello ladies. I just came across your video today. I was diagnosed with devics in 2008. I was 25 when it happened to me. Very close to the same age as both of you were. You are not alone. The statistics for having devics is 5 out of a million ppl. If you like to contact me. You can find me on iG. @oclove I have glasses on in my pic lol. I took was blind in one eye and was paralyzed as well...but with the power of prayer and an optimistic view and determination I over came that and came see and walk again. But I still have some issues. I'm glad to meet more ppl who I'm sure can understand me.
M 30 and I was diagnosed with NMO 2nhalf months back. Listening to you I can relate my symptoms and course almost the same. I am so pleased to see your videos. Keep posting and spread positivity ♥️
It is coming up on my 3rd year anniversary of when I had my very first attack. Jan 18th,2019. My first symptom was not being able to go pee after 36 hours. Let's put it this way, I live in Vancouver, Wa and drove up to Seattle to catch a flight. ( this is about a 2.5 hr.dr.) You always go to the bathroom before leaving the house. I couldn't go more than a few drops. Fly from Seattle to Atlanta, Ga. I drank coffee during the flight, still no more than a few drops. Get to Atlanta, rent a car drive 3 more hours to my moms. Tried to use the bathroom several times at several places. A trip that was going to last the weekend, turned into a trip there and the same routine back and by the time I was picked up by the ambulance, I wasn't able to stand up. When I got to the er , I asked the nurse for a urinary catheterisation. He thought I had lost my mind. Trust me, I thought I'd never ever ask for one of those. By this time, I was afraid of bad things happening to the bladder. I had over a litter drawn out and was in the hospital for about 2 to 3 days before they figured it out with blood draws and lots of other tests. I had never seen so many Dr.'s at one time , up until the day before I was let out, I was seeing a couple of different teams. I'm actually glad I didn't try and find out while in S.C. due to I don't think they would have figured it out. I'm glad we made it back home to Vancouver, Wa. There are some really great doctors out here and I have a great neurologist. I get infusion therapy twice a year. Take tons of vits, lots of magnesium. Smoke lots of weed and the lst important thing I have found to help seeing I am a 57 year old patient with 0 hormones. I now receive hormones along with testosterones. I have way less pain in my back when the levels are up where they are supposed to be. It actually helps with several of my new symptoms due to the NMO or Transverse Neuro Mylitus Opicta also known as Devics. I was already living with Fibromyalgia, DDD, PTSD, and Migraines. You know what, life is still great. I wake up everyday and I'm able to walk again. My eye sight never was bothered. I believe God don't put more on us than we can bare.
I can't hear you when with the volume turned all the way up. ☹ I was really hoping to watch because my brother was tested today for it after his health declined years after being diagnosed with MS.
@@aldellyv2893 I have a friend whose sister was perfectly healthy, and out of no where came the NMO diagnosis along with a stroke. No recent vaccines- no recent medical treatments- just birth control. I’m not saying there’s a link as there are no peer reviewed studies, but I personally suspect a link. We hear about infertility and cancers brought on by hormonal birth control, and I wouldn’t be surprised if there were collateral nervous system problems too. Again, this is not fact nor proven, just my suspicion.
Thank you so much I found your videos at the perfect time. I’ve been really struggling the last year after my first bout of severe optic neuritis.. I went from basically “normal and healthy” 28 with two kids to blind in one eye within a day or two and ended up in a neuro ophthalmologist office when he looked at me and said have you ever heard of devics disease? Umm no?!! He sent me to be admitted to the hospital for steroids and a battery of tests for a week. Vision came back. Sent home without any official diagnosis. Long story short the specialist have been going back and forth between MS and NMO for a whole year and it looks like they are leaning towards NMO and it is scary girl! I feel so alone I barely knew of MS, definitely never heard of NMO or even met anyone that has it.. your videos are definitely inspiring to see I’m not alone in this battle.. ❤️ thank you
You are not alone! We have similar situations and honestly if I'm alive and talking about it, you will be FINE! yes its very hard but we have to be strong. find me on FB &IG. :) Thank you watching, that is my goal to help others :)
Hello ladies. I just came across your video today. I was diagnosed with devics in 2008. I was 25 when it happened to me. Very close to the same age as both of you were. You are not alone. The statistics for having devics is 5 out of a million ppl. If you like to contact me. You can find me on iG. @oclove I have glasses on in my pic lol. I took was blind in one eye and was paralyzed as well...but with the power of prayer and an optimistic view and determination I over came that and came see and walk again. But I still have some issues. I'm glad to meet more ppl who I'm sure can understand me.
M 30 and I was diagnosed with NMO 2nhalf months back. Listening to you I can relate my symptoms and course almost the same. I am so pleased to see your videos. Keep posting and spread positivity ♥️
Thank you 😊
Thank you for this.
Very strong woman and great positive attitude regardless of what going through.... always fabulous 🥰🥰🥰
Angeceli Monegro thankx my luv!
I am so proud of you!!! And yes you are so lucky I love you !!!! ❤️💕😘
lol love you to!
Great video! So strong thank you for sharing ❤️❤️❤️❤️
THEZIMBEE thank you !
It is coming up on my 3rd year anniversary of when I had my very first attack. Jan 18th,2019. My first symptom was not being able to go pee after 36 hours. Let's put it this way, I live in Vancouver, Wa and drove up to Seattle to catch a flight. ( this is about a 2.5 hr.dr.) You always go to the bathroom before leaving the house. I couldn't go more than a few drops. Fly from Seattle to Atlanta, Ga. I drank coffee during the flight, still no more than a few drops. Get to Atlanta, rent a car drive 3 more hours to my moms. Tried to use the bathroom several times at several places. A trip that was going to last the weekend, turned into a trip there and the same routine back and by the time I was picked up by the ambulance, I wasn't able to stand up. When I got to the er , I asked the nurse for a urinary catheterisation. He thought I had lost my mind. Trust me, I thought I'd never ever ask for one of those. By this time, I was afraid of bad things happening to the bladder. I had over a litter drawn out and was in the hospital for about 2 to 3 days before they figured it out with blood draws and lots of other tests. I had never seen so many Dr.'s at one time , up until the day before I was let out, I was seeing a couple of different teams. I'm actually glad I didn't try and find out while in S.C. due to I don't think they would have figured it out. I'm glad we made it back home to Vancouver, Wa. There are some really great doctors out here and I have a great neurologist. I get infusion therapy twice a year. Take tons of vits, lots of magnesium. Smoke lots of weed and the lst important thing I have found to help seeing I am a 57 year old patient with 0 hormones. I now receive hormones along with testosterones. I have way less pain in my back when the levels are up where they are supposed to be. It actually helps with several of my new symptoms due to the NMO or Transverse Neuro Mylitus Opicta also known as Devics. I was already living with Fibromyalgia, DDD, PTSD, and Migraines.
You know what, life is still great. I wake up everyday and I'm able to walk again. My eye sight never was bothered. I believe God don't put more on us than we can bare.
This is very helpful information. What kind of foods to avoid with this disease also is there any exercises to do with this disease?
I'm glad you found this helpful. I share more on my Instagram, please follow: fab_nmo
You go girl ❤️❤️❤️
beauty boucher ❤️💚
Hola, quisiera que nos contaras las historias también en español 🥺 te agradecería
Sii lo tengo en español en mi canal chequea los otros vídeos
ua-cam.com/video/5LQqlo7sK9o/v-deo.html
2 years ago I was able to run marathon, now it's hard for me to get to grocery store. Coz of steroids i gained in weight.. I have NMO, hi from Russia
I can't hear you when with the volume turned all the way up. ☹ I was really hoping to watch because my brother was tested today for it after his health declined years after being diagnosed with MS.
Türkçe altyazı yok malesef
😫
Were you on birth control following up to the diagnosis?
yes I was
@@aldellyv2893 I have a friend whose sister was perfectly healthy, and out of no where came the NMO diagnosis along with a stroke. No recent vaccines- no recent medical treatments- just birth control. I’m not saying there’s a link as there are no peer reviewed studies, but I personally suspect a link. We hear about infertility and cancers brought on by hormonal birth control, and I wouldn’t be surprised if there were collateral nervous system problems too. Again, this is not fact nor proven, just my suspicion.