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Thank you for making this. I’ve never met someone else with this or heard of anyone with it, I was diagnosed when I was 15 and we still don’t know much at all. It’s nice to know people like you care about rare diseases that don’t effect a lot of people. Thank you
Thank you for the message! I'm still yet to meet anyone with MOGAD in person so far but online support groups has been great to connect with others. This week I will be releasing an updated video on MOGAD support groups if you haven't joined one already :)
Thanks, that is the reason I started this channel and website. I looked for information here myself and couldn’t find much so I started to try provide it myself. So glad you find it useful as this encourages me to continue!
Hey Scott! Chris gave you some great advice that you should keep building on. I also teach public speaking and help my students gather sources to cite references to create authority. I wish you the best with your journey and offer my support in well-wishes and positive thoughts! See you online soon!
My brother as this with his eyes … I am heart broken can someone let me kno if he can get his vision back fully… did anyone ever come back from this??? Please let me kno I’m beggin 💔💔💔
Mi hija tiene anti MOG positivo débil y esta tratada con rituximab, ácido micofenolico, prednisona y actualmente se añadieron dosis mensuales de inmunoglobulina... será el tratamiento correcto????... Gracias
Hey Roxan. I'm sorry to hear about your daughter. The good thing is all those medications are used to treat MOGAD. I have sent you a message with more info :)
One of my friend mother age 55. She was diagnosed by MOG. She had a optic neuritis .. she used to speak herself when she was diagnosed for the first time. Is murmuring also a symptoms of MOG?
Great question - Yes, medication can effect whether you test positive or not. I made a video explaining MOGAD testing and titre levels here which you might find useful - MOG Antibody Disease (MOGAD) Titres Explained ru-vid.com/video/%D0%B2%D0%B8%D0%B4%D0%B5%D0%BE-0yawDMK-COM.html
Hello sir, I'm from india,Recently my mother got MOG positive and now her vision also not clearly one eye and another eye was fully not visualise, Please suggest any best medication or any other suggestion,
Hi Joshi, sorry to hear about your mother's diagnosis. I'm not aware of any medication apart from the ones mention in the video. It can take some time to recover from MOG attacks. In my case I'm still noticing improvements almost 2 years later. I hope with time your mother's vision gets better!
Please tell me the diet chart for MOG patients.because recently my niece was diagnosed by this dieses and she's having problem in bladder.is it curable?she has got 73%of infection.
Hi, I’m sorry to hear about your niece. There is no specialised diet for MOG patients right now. MOG affects everyone differently but in general people do tend to see some improvement if the treatment is correct and given fast. I also have bladder problems and they have gotten better over time but it is still not 100% back to normal. Good luck to your niece and her recovery!
I was diagnosed in 2020 with MOGAD. I have retained bladder and bowel issues which I have been told by my Neurologist will be with me for life. A dietician put me on a diet commonly used for people with irritable bowel syndrome and it has yielded favorable outcomes
Hey I'm mog positive and after taking my first RITUXIMAB injection i feel vibration in my hands and feets from last 4days and also have headache and dizziness is it normal after first dose or should I worry about it???? please reply
Hi, I’m sorry to hear about your symptoms. I don’t think the vibration is a symptom of Rituximab. The headaches and sickness could be, you may want to contact a doctor depending on how serious it is
@@hetamanavadariya7331 i never recover my vision i got permanent damage from mog in my both eyes and now I'm facing tingling sensation in both my hands and legs other then i didn't have any other symptom
Sorry to hear of your diagnosis..im having relapses but told not Ms, it affects my lumbar area of spine plus neurological symptoms, how long did it take you to get diagnosed and how do your relapses play out?
Has anyone recovered fully? We need advice, our 2 year old has Anti MOG ADEM and lessions in the back of her brain, neck and spine. She lost lots of balance since her third episode and the IVIG was not as succesfull as the two earlier. The doctors has let her go with this balance condition for almost 3 weeks now and they want to give her Rituximab, we dont want to give her that. Anyone with a holistic approach? There must be other ways to heal the inflammation and stop the body from creating antibodies against the oligodendrocytes?
Hi Elsa, I’m sorry to hear about your daughter. Some people can recover fully and those with MOGAD tend to recover better than those with similar conditions such as AQP4+ NMO and MS. I’m not too familiar with ADEM in children but I do know of some people in the MOGAD community who may be able to help. If you can drop me an email at info@mymyelitis.com I give you their contact details.
My daughter is 3 years old and was diagnosis with mog disease this year..am giving her vitamin b complex with zinc plus vitamin d3 ..complex b it a natural antiflammatory
Hey Justin, great to hear from you again. Sorry you missed the call, there will be another on the 17th October. Sure, you can drop me an email at info@mymyelitis.com
