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Gracias por contar tu experiencia

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.

Hola, quisiera que nos contaras las historias también en español 🥺 te agradecería

This is very helpful information. What kind of foods to avoid with this disease also is there any exercises to do with this disease?

Türkçe altyazı yok malesef

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

Yo vivo c Nmo trato de hacer q mi vida sea mejor yo no camino y trato de vivir c dignidad.SArgentina deunpueblo Monte Maiz.❤

Hey there Aldelly, kudos to you and your honesty while telling your story. I am sure you have had quite a time of it while going through so much yet your ✨ shiny spirit, positivity and tenacity have kept you going. Thank you for being so upbeat with such issues and these are not the easiest to deal with and talk about at all, yet for those who can relate, it is refreshing to know we are NOT alone in this. Another autoimmune disorder that can cause the urinary incontinence is diabetes. Which I developed one year after a bad car accident. At the age of 43 I became a Type 1 Brittle Diabetic. Little did we know just how much damage had occurred. My Autonomic Nervous System has been shutting down so my stomach does not digest food, and my bladder does not hold my urine. As my boyfriend said to me in a joking (and silly, loving manner), Ur In for a lot of trouble. Oh how right he was. I have gone through all of the treatments you mentioned. The Botox was my last hope but it only lasted for 2 weeks. Thus I have had four surgeries to have Medtronics’ Inter-Stim NEUROSTIMULATORS placed in my backside. They are supposed to work for up to seven years, but mine have only worked each time for about 7- 10 months. So now I have the chronic UTI’s starting and I am not sure of what to do next. Enough said about me. I truly just had to applaud you for sharing your story and remaining cool, calm and collected while doing so. More of those who get diagnosed with your condition should be told about your web-site. As a diabetic I usually wander through those sites looking for help. This time I am wondering “what next” 🤔, as my Urologist only would tell me, we will only have that conversation if and when needed. I am feeling ready to have that talk. So keep on doing all that you are and keep finding what works for you!! You are a bright light for many who suffer in solitude and darkness and for them, I thank you!! Stay strong, and stay well. Sending ☮️ and ❤️ your way as you continue to heal.

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 ♥️

Ayuda por favor

Hola soy de ARGENTINA. Estoy en estudios para si ver si es,esclerosis o nmo por la cantidad de lesiones que hay en la medula. Asi salio en la resonancia. Tengo miedo estoy desesperada

Were you on birth control following up to the diagnosis?

Have you tried the Wahls Protocol? I just started my husband on it.

hola mi nombre es natalia. soy ARGENTINA Y ME QUIERO CONTACTAR CON VOS,TENGO EL MISMO DIAGNOSTICO.

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.

Que linda m encanto ❤️

You are such a beautiful person! Thank you for your sharing🌷

Hello you look great!!! I did the same treatment, I did 5 sessions at first. then for whatever reason they had me do another five, which worked because I got stronger and my movements started to come back. It was the most scariest thing to have your blood removed and get cleaned and then returned. Do you struggle with fatigue of the muscles? I find my muscle gets so fatigued like they've been running a marathon. Thanks for sharing

I wish I had this information when I was struggling with incontinence. However kegel exercises did work for me., As well as being aware of what I'm drinking and how much such.

hola mi nombre es Nicole y mi mamá tiene neuromielitis óptica, todos los síntomas que comentaste los tuvo mi mami y también se demoraron en diagnosticarle su enfermedad. Para ella fue difícil pasar de ser una mujer activa a depender ahora de otras personas, cambiar su estilo de vida totalmente. Pero ella tiene ya dos años y seis meses que sabia a que se tenia que enfrentar, le diagnosticaron la enfermedad en mayo del 2018, en el hospital Carlos Andrade Marín en la cuidad de Quito - Ecuador de ahí hasta ahora a tenido varias recaídas, de las cuales las ha superado y estamos aprendiendo a vivir con la enfermedad. Estamos conscientes que no hay cura, y haciendo lo posible para sobrellevar esto.

Girl I really love the way you embrace your autoimmune disease!!! Very brave of you 😘😘

Yo nunca tome los convencionales. Solo Protocolo Coimbra. Desliga las enfermedades autoinmunes.

Dónde aprendiste español?

☺️☺️☺️☺️

Muchas gracias por regalarnos tu historia! Me diagnosticaron hace menos de 1 mes con nmo, es muy duro pero como decís, vamos a estar bien, no estamos muriendo, y siempre hacia adelante! Concuerdo con vos, la punción lumbar es lo peor! La sufrí muchísimo, pero mientras ayude al diagnóstico hay que hacerla, no queda otra.. Muchas gracias por compartir tu experiencia! Ojalá sigas así de bien siempre :)

Me encanta el humor que tienes para explicas tu situación

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

I am so proud of you!!! And yes you are so lucky I love you !!!! ❤️💕😘

Eres maravillosa, sigue así, sigue adelante, dios nunca va a desamparar a una hija.

Very strong woman and great positive attitude regardless of what going through.... always fabulous 🥰🥰🥰

Great video! So strong thank you for sharing ❤️❤️❤️❤️

You go girl ❤️❤️❤️