I was diagnosed with MOGAD in 2020 but first experienced optic neuritis in 2017. So scary waking up with little to no vision, a terrible headache, and sharp pains in your eye. Currently on Rituxan infusions since being diagnosed. Thank God I’m okay.
Hey I'm having vibration sensation after my first RITUXIMAB injection and also have headache and weekness is it normal to feel uncomfortable with first infusion or i should worry about it
I was just diagnosed w MOG at Emory U a few days ago. Steroid IV, then PLEX fereisis. Solid tabs another 6 months + a one of three fairly new drugs. For mine they chose (I think) called ITVG. Right eye had no myelin damage predicted to regain vision in 90+% range. Left is damaged maybe 50%, do have fair bit of peripheral. Hope this helps. New research paper to be released soon w 50 subject study.
What is the life expectency for mogad and optic neuritis?? Are other body parts also affect with mogad positive? My mother is undergoing treatment( steroids) for optic neuritis
I’m not aware of any research on MOGAD life expectancy. Generally people if people are given the correct treatment quickly they tend to cover well. Steroids can be an effective treatment for optic neuritis so I hope it helps your mother
@@MyMyelitis hey thanks for the info! Could you please make a whatsapp group or something where people can discuss there experiences related to mogad so that everyone will have a better understanding? It would be really helpful mentally for the ones who are suffering or for there loved ones who r suffering!
I’m considering making a community at some point but I’m not 100% on the platform yet. There are a number of support groups for MOGAD where you can talk about your experiences. You can find a list of them here - mymyelitis.com/mog-antibody-disease/support-group/
@@MyMyelitis yes very much i have my old vision back.. Now started tapering steroids hope i can stay off from steroids in future and end cellcept therapy too😕Everyday is just depressing for me.. Being sick
@@bhavyalaiju9428 That's great that you have your old vision back! I hope the steroid taper goes well and you no longer need Cellcept. Do your healthcare professionals plan to test for MOG antibodies in the future?
@@MyMyelitis They don't tell me anything.. All information i have is through the internet and videos like yours!!! I thought once positive always positive..
@@bhavyalaiju9428 I found information hard to find, which is why I started this channel. I'm glad you're finding it helpful. I plan on making videos again in 2023. Some patients are positive and then turn negative afterward. I made a post and video to try explain it - mymyelitis.com/mog-antibody-disease/mogad-titres-explained/
I was diagnosed with MOGAD in 2020 but first experienced optic neuritis in 2017. So scary waking up with little to no vision, a terrible headache, and sharp pains in your eye. Currently on Rituxan infusions since being diagnosed. Thank God I’m okay.
Hey I'm having vibration sensation after my first RITUXIMAB injection and also have headache and weekness is it normal to feel uncomfortable with first infusion or i should worry about it
I'm sorry to hear about your diagnosis and I'm glad you're okay. I hope the Rituximab has stopped any further attacks from happening!
Hi, Rituximab seems to have a lot of side effects. Do you experience them every time you are taking Rituximab?
Hi
Nice video. Thanks for sharing.
Thank you! You’re videos were a great help to learn about MS when my diagnosis was unconfirmed
@@MyMyelitis Thanks. I'm working on a video on MOGAD.
Great, I’m looking forward to seeing it! If you need any help let me know
Thank you for this and all your other videos! They are a great help to me and help me explain to those around me about MOGAD.
Thank you for the kind words. I’m glad you find them useful, it motivates me to keep making them :)
I was just diagnosed w MOG at Emory U a few days ago. Steroid IV, then PLEX fereisis. Solid tabs another 6 months + a one of three fairly new drugs. For mine they chose (I think) called ITVG. Right eye had no myelin damage predicted to regain vision in 90+% range. Left is damaged maybe 50%, do have fair bit of peripheral. Hope this helps. New research paper to be released soon w 50 subject study.
I’ve never heard of ITVG, has it managed to stop further damage from MOGAD? I’d be interested to learn more about it
Thank You, With Deep appreciation!!
Thank you for your kind comment!
@@MyMyelitis thank you for offering additional understanding about this thing that the doctor told me I had.
So super information about mog ad diases
Thank you, I’m glad you liked it!
What is the life expectency for mogad and optic neuritis?? Are other body parts also affect with mogad positive? My mother is undergoing treatment( steroids) for optic neuritis
I’m not aware of any research on MOGAD life expectancy. Generally people if people are given the correct treatment quickly they tend to cover well. Steroids can be an effective treatment for optic neuritis so I hope it helps your mother
@@MyMyelitis hey thanks for the info! Could you please make a whatsapp group or something where people can discuss there experiences related to mogad so that everyone will have a better understanding? It would be really helpful mentally for the ones who are suffering or for there loved ones who r suffering!
I’m considering making a community at some point but I’m not 100% on the platform yet. There are a number of support groups for MOGAD where you can talk about your experiences. You can find a list of them here - mymyelitis.com/mog-antibody-disease/support-group/
I was 6 when i was diagnosed with mogad had optic neuritis it was in 2016 currently on ivig
Thanks for sharing, I hope the IVIG is working for you
Nice scout are you fine now
Hi Ankit! Yes I have not had any relapses and my symptoms are still slowly improving
@@MyMyelitis thank you bro for your support
@@itzAnkitpandey You're welcome, I hope you are doing well too!
i got Right optic neuritis MOGAD POSITIVE.. currently on steroids now started cellcept
Sorry to hear about that Bhavya. Has the steroids helped your optic neuritis?
@@MyMyelitis yes very much i have my old vision back.. Now started tapering steroids hope i can stay off from steroids in future and end cellcept therapy too😕Everyday is just depressing for me.. Being sick
@@bhavyalaiju9428 That's great that you have your old vision back! I hope the steroid taper goes well and you no longer need Cellcept.
Do your healthcare professionals plan to test for MOG antibodies in the future?
@@MyMyelitis They don't tell me anything.. All information i have is through the internet and videos like yours!!! I thought once positive always positive..
@@bhavyalaiju9428 I found information hard to find, which is why I started this channel. I'm glad you're finding it helpful. I plan on making videos again in 2023.
Some patients are positive and then turn negative afterward. I made a post and video to try explain it - mymyelitis.com/mog-antibody-disease/mogad-titres-explained/
❤❤
Hi. Can you update in TikTok? Tqia...
Hi Norfaridah, I’m looking to start posting MOGAD information on TikTok soon