The Sumaira Foundation is a 501(c)(3) organization dedicated to generating global awareness of NMOSD* and MOGAD*, building communities of support for patients and their caregivers, supporting research and patient advocacy
*NMOSD stands for neuromyelitis optica spectrum disorder, a rare neuroimmune condition in which the immune system attacks cells in the central nervous system (CNS), mistaking them for foreign invaders.
*MOGAD stands for myelin oligodendrocyte glycoprotein antibody-associated disease, a rare neuroimmune condition that targets the MOG protein which is located on the surface of myelin sheaths in the central nervous system.
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.
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.
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
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.
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
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??
Leider schaue ich schon seid 30 Minuten, es wird erzählt , viel erzählt wie schlimm es ist, was es tut, und so weiter, aber was ist mit Therapien, Heilung, richtige Tipps ?
Die Themen, die sie ansprechen, Therapie, Heilung und Tipps waren in diesem Webinar leider nicht auf der Tagesordnung. Es sollte wirklich um die Differenzierung der Erkrankungen gehen. Zum Austausch über den Alltag mit NMOSD und MOGAD lade ich sie gerne zu wir.und.nmo bei Facebook und Instagram ein. Vielleicht sehen wir uns ja in der Plauderstunde. Herzlichenl Grüße, Matthias
Molto bello questo video spiega molto bene, è importantissimo avere informazioni su questa malattia non sempre conosciuta, io ho scperto de avere NMO nel 2019 dopo tante diagnosi sbagliata. 🤗
Sono Monica mi è molto interessato il suo discorso mi hanno diagnosticato la mogad dopo un anno e mezzo e purtroppo ho avuto parecchi ricovero però sono stata curata bene a quanto ho capito con cinque giorni di cortisone da un grammo e poi plasmaferesi per cinque cicli e poi faccio la monoclonale con retibuc però purtroppo la malattia ha parecchie recidive e occhio sinistro mi ha portato subito alla cecità invece quello destro viene colpito un Po alla volta nn ci sono altre terapie per contrastare questa malattia per poter fare una vita nn dico normale ma almeno apprezabie e nn sl guarisce di questa malattia o almeno fare in modo sl tenerla a bada e nn avete un ricovero dietro al sltro io ha maggio sono stata ricoverata e a luglio dinnuovo in un anno ho fatto cinque ricoveri e tre plasmaferesi che unica cosa che mi aiuta un po mi torna la vista dall occhio destro da due decimi a quattro dei decimi e in piu mi è venuta pure la cataratta solo che dura pochi mesi e torno a nn vedere sl può fare altro si è scoperto solo nel ultimo ricovero gli anticorpi non che sono 515prima erano sempre negativi ed era un problema speriamo di stare meglio perché nn vedendo riscontro e fisicamente ti sbatte molto sono ingrassata parecchio e in piu coloro e tremolio ogni tanto perché anche il corpo ne ha patito faccio cinquanta metri e mi devo fermare nn sono più in grado dì fare le cose che facevo prima e quando faccio qualcosa in piu poi devo dormire che i tre ore io prima del una persona molto attiva facevo tante ore dì lavoro camminavi parecchio e andavo in bici avevo parecchia forza ora faccio praticamente niente ha confronto e sono sempre stanca se sapete qualcosa in piu se mi scrive dottoressa mi ha un gran favore da fare un vita dignitosa anche se so che dovrò convivere con la mia malattia grazie aspetto una sua risposta
Ciao Monica! Abbiamo inviato il tuo messaggio alla Dott.ssa Mariotto che sarà felice di vederti nel suo ambulatorio presso l'Università di Verona. Puoi anche inviarle le tue cartelle cliniche per una seconda opinione, se lo desideri. Si prega di inviare un'e-mail a info@sumairafoundation.org se si è interessati a entrambe le opzioni.
