Neuromyelitis Optica Spectrum Disorder - Is it Always a Recurring Disease?

[@TheMinenow1]

Dr. Levy is my new favorite lecturer. I have multiple autoimmune diseases and am in the midst of a work-up with an amazing neuroimmunologist to differentiate if I have NMO, MS, or neuro-Behcet's. Lectures like this are so helpful for those who are in the process. Thank you so much!

[@BalaiKamanggahan]

Learned a lot from this lecture. Newly diagnosed here of NMO from the Philippines and I am learning a lot of this conditoon one day at a time.

[@wearesrna]

Hi Jonel, please consider becoming a member of SRNA. Membership is completely free and will allow you to learn about our programs, events, and information about NMO. You can join here: wearesrna.org/join/

[@memom9419]

Great thank u it’s very simple and informative for peri graduation too 💜

[@Shelley550]

Precisely spot on l was hospitalized at age 51 & diagnosed NMO 7 months ago, 2 lesions with half blindness & paralysis, fatigue, cognitive etc.. Treated with plasma👌🏽 & steriods, ongoing retuximab infusions I have recovered well🙏🏼 After months of heavy tight pulling numbness in trunk has finally gone, l do have constant cold electric burn in legs ñ feet (neuropathic pain) from nerve damage & pain in spinal lesion, IF that is healing Hallelujah!! Now my hands are affected, Relapse is a huge worry.!. 🙏🏼 p.s~ I did wonder IF there was any correlation with hormones/menopause!!..

[@susanfischer6155]

I think I have this 😿

[@Shelley550]

@@susanfischer6155 Õh dear, have u had an MRI yet? And how long have u had symptoms?.... MRI & lumbar puncture for spinal fluid will determine results

[@afatherslove5341]

I would like to talk with someone...I am an unusual case....I try to search and search for someone who's case is like mine but I can't find it.....I have had NMO for at least 22 years....if you were to see me at the store you would never know anything was wrong with me....Not to say I do not have symptoms because I sure do but not typical symtoms......I do have alot of pain in body....fatigue...some optic nerves have died but vision is still pretty good in both eyes.....I have full function of my body.....I have made the choice to not take the meds for this conditon and I seem to be doing better than anyone I read about.....Again not to say I don't have symptoms because I sure do but just completely not typical.... I did test positive......and I have the two lessions you speak about...... I'm happy I'm doing as well as I am 22 years into it but also still so scared of the future....I can't find enough info to know what I can expect..... If anyone would like to talk with me I would be grateful...... Thank you in advance :)

[@ValeriaHernandez-ov4md]

Misty In The Meadow I'm 17 yrs old and I was diagnosed with NMO about a month ago. I am partially blind on my left eye and I had an episode of optic neuritis last July in my right eye but thankfully I regained my vision. Other than the fact that I can't see from one eye, I am asymptomatic. No pain, occasionally my back hurts really bad and my eyes as well and I was actually told today that some fibers in my spine are swollen which is what tends to happen with this condition. I am taking medicine and I feel okay with it. My brother also has NMO but his is so far advanced, he is 100% blind and is currently unable to walk. I guess this condition just progresses differently on people and I'm glad that you're doing great.

[@afatherslove5341]

Valeria Hernandez wow....your so young. ..... I've been living with this for at least 22 years but probably more... Sad that your brother has it too... I was worried about you I'm glad you still have the other one... If I remember correctly it seems the illness does its worst in the beginning... I think I have the monophasic kind. ....

[@johnhungerford6073]

Ask your doctor about leaky gut syndrome. Glutens cause damage to intestines and then let in toxins that cause auto immune diseases. Talk to an NTP(nutrition therapist practitioner) and improve your diet. See if that does not help.

[@johnhungerford6073]

Can you tell me about your diet?

[@afatherslove5341]

John Hungerford yeah I do my best to stay gluten free and I'm pretty new to it but I know that that is key.... I also try to keep my carbohydrates low and take vitamin D and black seed oil

[@lou9294]

I don't know if you guys can help me but I've had all the symptoms that you've talked about I have multiple lesions over my body the plasmapheresis doesn't work anymore so now I'm doing the rituxan I was paralyzed in my legs and my arms and hands in my spine is on fire every other day I wish there was some way that you guys can help me thank you for posting this video God bless you I have videos on my page talking about my disease

[@divinee.155]

lou9294 protein should be ur best friend I strongly believe proteins speeds up healing I made a full recovery after my first attack I had a autoimmune disease as a child called mystenia gravis and it just went away in its own .....so I'm hoping this will too but protein eggs three eggs almos every day and tuna makes for a full recovery

[@Shelley550]

I would not be loading up on eggs with NMO due to the hormones in them, B12 with ongoing treatment from neurologist is ur best friend 🙏🏼

[@nealruth2802]

Thank you for posting this.

[@afatherslove5341]

oh and my onset was when I was 27 years old....and like I said it's been 22, 23 years now.....

[@wearesrna]

Thanks for your comment. Have you tried connecting with other individuals on Smart Patients Online Health Health Community? Here is the link: myelitis.org/living-with-myelitis/resources/smart-patients-online-health-community/ If you want to stay up to date with new research, current information is available on the Transverse Myelitis Association's website at www.myelitis.org.

[@afatherslove5341]

Thank you. ..I have NMO.... is that different than the condition for the link you're giving me?

[@wearesrna]

They have groups dedicated for NMO patients. You can also visit our resource library: myelitis.org/living-with-myelitis/resources/resource-library/?fwp_search=NMO

[@dfweurocars]

my mom just got diagnosed and the meds the doctors are giving her are not working...please email me [e-mail]

[@wisfulee]

I was 71 years old when I had my first attack.

[@susanfischer6155]

Thank you Ann!

[@susanfischer6155]

How is this different from Parkinson’s

[@manishshyamkul7430]

child diagnosed to have nmo at the age of 3 and half yrs..aquphorin anti bodies positive ,relapsing form . parents are worried about the next pregnancy ,what are the chances of next pregnancy having nmo.

[@minxiimayhem6781]

i was diagnosed 2 yrs ago at the age of 21 im blind in my left eye but also suffer from paralysis for weeks after attacks and i have a full spinal fusion.... im a single mom and my attacks seem to get worse when my blood pressure spikes during an anxiety attack... any ideas on how to keep me from needing to go to the hospital?

[@divinee.155]

minxii mayhem I had an attack my first took three weeks to get bad but when I went to the hospital and sat in the air condition it got worse within hours .... I ate alllllot of eggs and proteins and bac Choy cabbage almost no carbs during initial heeling stage and I made a full recovery....when u have an attack eat protein lots it's important to ur recovery