Estoy en espera de mi tratamiento y se que me van ayudar gracias ❤️ que dios los bendiga a ustedes y las personas que ayudan❤️

So what treatment did you get for mogad? Only steroids for flare ups?

Cuales son los efectos secundarios de los tratamientos

He sido diagnosticada de Nmo seronegativa. Estoy en la provincia de Valencia. Sería posible una visita en el Cemcat?

This was very interesting but I cried when they said Rituximab is not so good for MOGAD as my daughter had relapsed on mycophenolate and so is now having Rituximab, so many times you said IVIG was the best but they won't give it too her. 😢

اني عندي MOGAD

My husband just got diagnosed... Thank you so much for this and your work! Und vielen Dank an Matthias

Appreciate everyone getting together to talk about a particular case and go through the thought process season analysis that goes into diagnosis and recommendations. An aggressive case, treated aggressively.

❤❤❤❤❤❤❤ Vulnerable and Courageous. Keep building your - global - village. Never Alone #NMOSD ❤❤❤❤❤❤❤

Dziękuję za ten materiał i proszę o więcej na temat MOGAD :)

A message to Dr Amy Kunchok. I am from Australia and my daughter has MOGAD. She had her first optic neuritis attack 11mths ago, unfortunately no one knew what was wrong so by the time she was put on intravenous steriods she had lost a lot of her sight in her left eye which has never returned. After 7 months of being on mycophenolate she relapsed in the same eye. They put her on a higher dose of mycophenolate but she suffers a lot on this medication and after a fight to get it will recieve rituximab, they refused her IVIG. This is so terrible I don't want my daughter to become blind. In QLD hospital no one knows about MOGAD I feel so helpless. Please because you are from Australia, is it possible for someone to help her or for you to pass on the knowledge that you have. 😢 Thankyou Sharon

Please Italian subtitles 🙏

Excellent discussion I must say. Thank you. I am finding the journey to be seen by a neurologist with experience and knowledge with NMOSD and MOGAD very difficult here in Hamilton, Ontario Canada. I'm sure there are many others, sadly, who have been dismissed as I have been as having a psychogenic Conversion Disorder/Functional Neurological Diagnosis. Fortunately in my case I was able to be seen by an experienced professor emeritus neurologist who indicated my issues are organic as Paroxysmal Kinesigenic Dyskinesia with parkinsonian features and not psychogenic albeit PKD is often mistaken as a psychogenic condition as he mentioned and the literature mentioned. Since this neurologist has retired and did not forward me to another neurologist. If only I could find a neurologist here who understands the signs of brainstem inflammation combined with McArdle sign, I believe. With paroxysmal dyskinesia and ataxia, see. "Case Series of Patients with Brainstem Inflammation Causing Paroxysmal Movement Disorders" - Evan Luxenberg, Yujie Wang, Annette Wundes, and Gloria Von Geldern. April 25, 2023. Neurology. 100(17 suppl 2) Abstract Objective: We describe five patients with various neuroinflammatory diseases who developed Paroxysmal Movement Disorders (PMD). Background: PMD are a rare phenomenon that has been described in patients with multiple sclerosis since the 1940s. PMD are typically responsive to carbamazepine. One subtype of PMD is paroxysmal dysarthria and ataxia syndrome (PDA), characterized by stereotyped episodes of dysarthria and ataxia, lasting seconds and recurring several times per day. This is thought to be due to transverse ephaptic transmission between demyelinated axons in the brainstem. Recently, cases of PDA in other neuroinflammatory diseases such as Behcet’s disease, MOG-antibody disease (MOGAD), Bickerstaff encephalitis, and anti-NMDA encephalitis have been described but the spectrum of PMD in neuroinflammatory diseases has not been sufficiently studied. Design/Methods: Case report series. Results: We describe in detail five patients with CNS inflammatory diseases who developed PMD. Underlying diseases were chronic lymphocytic inflammation with pontine perivascular enhancement responsive to steroids (CLIPPERS), MS, MOGAD, and post-infectious encephalitis (COVID and LaCrosse virus). Four patients developed PDA, while one presented with paroxysmal esophageal contractions. Paroxysms were brief (less than 10 seconds) and frequent (up to hundreds of times a day). On MRI, four patients had lesions in the medial midbrain and one had a lesion in a cerebellar peduncle. In four cases paroxysms were treated successfully with carbamazepine. All patients had complete or near-complete remission of their PMD. Conclusions: This series highlights that different neuroinflammatory disorders can cause PMD. This is the first report of PDA in CLIPPERS or post-COVID encephalitis, and the second report in MOGAD. Most patients had lesions in the dorsal midbrain below the red nucleus, a site commonly reported to cause PDA. Treatment with carbamazepine was successful. PMD in neuroinflammatory disease is important to recognize as symptoms can be debilitating but successfully treated. This case series can help improve awareness of this rare condition. Disclosure: Dr. Luxenberg has nothing to disclose. The institution of Dr. Wang has received research support from Genentech. The institution of Dr. Wundes has received research support from Benaroya Research Institute . The institution of Dr. Von Geldern has received research support from Novartis. The institution of Dr. Von Geldern has received research support from National MS Society. Dr. Von Geldern has received personal compensation in the range of $0-$499 for serving as a DSMB member with NIH, NINDS. Dr. Von Geldern has a non-compensated relationship as a editorial board member with MS and Related Disorders Journal that is relevant to AAN interests or activities.

Quale ospedale che si occupa di questa malattia

More about mogad please, can be negative after the second attack, there is pain but a low level of antybody, is this possible?

Did the panelists go through rehab?

My 21yo son is currently going through this. Where is Dr. Greenburg located? We're in need of his assistance asap.

Genial la información compartida. Gracias al doctor y a todos los participantes 🙏🌹🙏

Świetna inicjatywa!

A mí hija le dieron diagnóstico de vasculitis hace 3 años y le han dado esteroides pero ahora dicen que puede ser mogad y desde los 6 años si diagnóstico fue epilepsia la atiende el INP pero en 10 años no han podido dsr un diagnóstico certero apneas empezó a perder visión repentina y adormecimiento de mitad del cuerpo.

Desafortunadamente a mi nieta le dio mog, y esta muy enferma desde hace más de dos años se lo diagnosticaron y dijeron que no tenía cura.

Thank you so much, such heart felt information and stories.❤

Bonjour à vous Je suis un homme de 38 ans. Dans mon cas j'ai fait une névrite optique sévère sur les deux yeux au mois de décembre 2023. Après plusieurs prises de corticoides et échanges plasmatiques, je ne vois toujours pas clair à date (avril 2024). En effet, j'ai une sensation de voir au travers d'un voile blanc et un contraste des couleurs très significatif (les couleurs sont délavées!). Je ne sais pas si j'aurai une meilleure récupération dans les prochains mois!? Pourriez-vous, SVP, m'indiquer s'il existe des filtres qui puissent me permettre de voir sans ce contraste de couleur et sans ce voile blanc ? Je vous remercie d'avance pour votre retour

Hola desde mexico mi hija le dio neuromilitis optica ya lleva 2 años y toma azitropina pero tiene muchos calambres y si salio con acuaparina 4 perdio la vista del ojo izquierdo que podria darle aparte de lo que toma toma prednisona

Le nom de l'application svp?

Complimenti! ❤️

Thank for all the encouraging, I’m am diagnosed in 2009 with MS. At the end of the year 2023. My right eye start getting blurry. February 2024 they diagnosed me with NMOSD. I’ll already started my first infusion therapy last March 4. I have a good days and also a bad days. I’m adjusting of everything.

Hola Me podria decir si MOGAD causa ceguera

IAM LIVING WITH NMO FOR 4 YEARS WITHE OUT RELAPS IAM SO OK

Halo cantik kamu tambah cantik sempurna bisa kenalan kah sayang nama ku imam Jawa Indonesia

Thankyou for being you Michael 💓

So beautifully said.❤

Bardzo pomocny filmik dla osob które zmagają się z choroba MoGad o której jest bardzo mało informacji. Dziękuję za dodanie.

I feel. much. sorry. for. you .

🌹🥀🌷🌸🌺🍑🍎🥭🍍🍓🍏🍈🍐🍊🍋

Dziękuję za ten materiał

Salve vi contatto perché mi è stata diagnosticata MOGAD mi date dei vostri contatti

Is this something new, we will know some points of what he is saying in English.

Habla español se entiende mejor

Happy New Year ❤

Beautiful thankyou ❤

Hello mam i am from kashmir

wow. There are a few of us around! i’m in England and now under Oxford hospital always hearing how rare it is, so it’s great to be able to see and hear other stories so similar

Thankyou so much, you give us hope. ❤

اني عندي MOG وآخذ ابره كل شهر RoActemra 20 mg/ml

Very clear and informative! Thank you!!

Are you on psych meds as your every day norm??? Were you on them? We have been on this journey since Sept 22. We are through the physical journey ( thank GOD) but we're still having mental issues .can you tell me do you take any meds continually??

What an amazing webinar it was!!!

Will we ever know what they were saying.?

Thank You all of you for sharing ❤❤❤❤