This is such helpful information! I've watched a couple of these videos from Dr. Levy, and it helps reinforce understanding about the disease for me. I'm a middle-aged female who was diagnosed in late 2020. Initially, it presented itself in my lower spine, resulting in not being able to urinate, extreme pain in my torso and lower body, and balance/lack of strength issues in my legs. I relapsed in February, 2022, and this time had issues with pain/vision issues. I've been on IVIG infusions for over a year w/no relapse. That said, it's hopeful that there are new clinical trials out for MOG patients, since IVIG is cost prohibitive.
Thanks … very helpful video … not so much visual information about this MOG. Close family just diagnosed with this, from Denmark, Europe. Keep up the good work. ❤
fabulous, concise presentation. My son was diagnosed in Dec of 2022. He spent a week inpatient for high dose IV 1g methylprednisone treatment due to brainstem lesions and cranial nerve involvement which impacted his vision. He was also experiencing weakness, discoordination, trouble with having to think in order to articulate words, and think to walk. Since is treated outpatient with Rituximab infusions and has been tapering off of steroids. He is back to his base line and we are grateful. Some relapse symptomology. Would love to get into contact with Dr. Levy, MD.
So you know if he tested normal in his mri after a while? I had all these including the vision and trouble speaking walking. Couldn’t get any treatment because it was caused by a Covid vaccine and at the time doctors didn’t “believe” a vaccine could be negative. Didn’t have an mri for months and came back clear twice (no contrast ever. I suspect I had an ADEM attack and went untreated. I self doses with steroids have some effects these days
Hello, we are not able to answer this question, as we at SRNA are not medical professionals. We recommend speaking with your physician and asking for them to consult with Dr. Levy if necessary.
I also have mog. I would love to be in a group if others to learn what helps. What question to ask the Dr. Things like that. There’s is a group on face book but I have found little help. ☹️
Hi Candace, we're sorry to hear about your diagnosis. Please consider becoming a member of SRNA. Membership is completely free and allows you to stay connected to the SRNA community, including the opportunity to join our online support group meetings. You can become a member here: wearesrna.org/join/
Hi Linda, you can learn about MOG antibody disease and MOG attacks here: wearesrna.org/living-with-myelitis/disease-information/mog-antibody-disease/. If you would like more information, please email us at info@wearesrna.org.
My husband has this disease and now he is doing rituximab injection... 4 done now.. treatment in Kozhikode medical college.. next month he has injection... we are worried if this disease will go away completely... now he is taking visalon 5 mg and vitamin pill...in India plz help
My brother had his first attack of optic neuritis in March 2022. After that he was given steroids, as soon as the steroids were stopped, he again had another attack.He was given steroids again, then again after stopping the steroids, he again had another attack. After that it was found in the testing that he is positive for the MOG ANTIBODY disease.His plasma exchange was done in the last week of June. After plasma exchange azathioprine was also started and steroids were tapper. But as soon as the steroids were reduced, he had another attack. This is his 4th release. Please help us regards the treatment. We are from India. He is just 16 year old.
Hi Anjali, we are so sorry to hear about your brother's diagnosis. Please email us at info@wearesrna.org and we will provide you with resources that may help answer your questions and direct you to further help.
We suffer with you, our 2 year old has Anti MOG ADEM and its a terrible condition, i say condition cause we must find a cure; its out there in the nature. All these doctors give is just to take away the symptoms, i hope to find a holistic approach, make sure you give your brother a anti inflammatory diet and try cbd and lionsmane mushroom extract. It will help the nerves, but dont give cbd when he is on steroids, prednisolon or betapred, they interfere with eachother, have you been offred plasmaferes?
This is such helpful information! I've watched a couple of these videos from Dr. Levy, and it helps reinforce understanding about the disease for me. I'm a middle-aged female who was diagnosed in late 2020. Initially, it presented itself in my lower spine, resulting in not being able to urinate, extreme pain in my torso and lower body, and balance/lack of strength issues in my legs. I relapsed in February, 2022, and this time had issues with pain/vision issues. I've been on IVIG infusions for over a year w/no relapse. That said, it's hopeful that there are new clinical trials out for MOG patients, since IVIG is cost prohibitive.
Great Video, Thank You!
Thanks … very helpful video … not so much visual information about this MOG.
Close family just diagnosed with this, from Denmark, Europe.
Keep up the good work.
❤
Hello, thank you for your comment. You can find more info about MOG on our website at wearesrna.org/
fabulous, concise presentation. My son was diagnosed in Dec of 2022. He spent a week inpatient for high dose IV 1g methylprednisone treatment due to brainstem lesions and cranial nerve involvement which impacted his vision. He was also experiencing weakness, discoordination, trouble with having to think in order to articulate words, and think to walk. Since is treated outpatient with Rituximab infusions and has been tapering off of steroids. He is back to his base line and we are grateful. Some relapse symptomology. Would love to get into contact with Dr. Levy, MD.
Hi Meagan, please reach out to Rebecca at rwhitney@wearesrna.org, and she can assist you.
So you know if he tested normal in his mri after a while? I had all these including the vision and trouble speaking walking. Couldn’t get any treatment because it was caused by a Covid vaccine and at the time doctors didn’t “believe” a vaccine could be negative. Didn’t have an mri for months and came back clear twice (no contrast ever. I suspect I had an ADEM attack and went untreated. I self doses with steroids have some effects these days
@@AndreiFantastic Hello, please email us at info@wearesrna.org if you would like to be connected to resources.
I am 37. I have ADEM and MOG
What would be the recommended drop if I have been prescribed steriods? So far it's 60 MG for four days then a step down every four days
Hello, we are not able to answer this question, as we at SRNA are not medical professionals. We recommend speaking with your physician and asking for them to consult with Dr. Levy if necessary.
I also have mog. I would love to be in a group if others to learn what helps. What question to ask the Dr. Things like that. There’s is a group on face book but I have found little help. ☹️
Hi Candace, we're sorry to hear about your diagnosis. Please consider becoming a member of SRNA. Membership is completely free and allows you to stay connected to the SRNA community, including the opportunity to join our online support group meetings. You can become a member here: wearesrna.org/join/
what is a MOG attack ? can someone give me a link to explaination. thank you
Hi Linda, you can learn about MOG antibody disease and MOG attacks here: wearesrna.org/living-with-myelitis/disease-information/mog-antibody-disease/. If you would like more information, please email us at info@wearesrna.org.
I want to share my problem please let me know where I can
Hello, please email us at info@wearesrna.org
My husband has this disease and now he is doing rituximab injection... 4 done now.. treatment in Kozhikode medical college.. next month he has injection... we are worried if this disease will go away completely... now he is taking visalon 5 mg and vitamin pill...in India plz help
Hello, please email us at info@wearesrna.org and we will direct you to resources.
Hey hi, can u pls share ur contact details, even my brother has been diagnosed with the same disease, iam from chennai
How is condition now? Okeyy
Iam a malayali from palakkad
My brother had his first attack of optic neuritis in March 2022. After that he was given steroids, as soon as the steroids were stopped, he again had another attack.He was given steroids again, then again after stopping the steroids, he again had another attack. After that it was found in the testing that he is positive for the MOG ANTIBODY disease.His plasma exchange was done in the last week of June. After plasma exchange azathioprine was also started and steroids were tapper. But as soon as the steroids were reduced, he had another attack. This is his 4th release.
Please help us regards the treatment. We are from India. He is just 16 year old.
Hi Anjali, we are so sorry to hear about your brother's diagnosis. Please email us at info@wearesrna.org and we will provide you with resources that may help answer your questions and direct you to further help.
Plz send your nomber anjali.. Are you malayali..??My husband also has this disease
We suffer with you, our 2 year old has Anti MOG ADEM and its a terrible condition, i say condition cause we must find a cure; its out there in the nature. All these doctors give is just to take away the symptoms, i hope to find a holistic approach, make sure you give your brother a anti inflammatory diet and try cbd and lionsmane mushroom extract. It will help the nerves, but dont give cbd when he is on steroids, prednisolon or betapred, they interfere with eachother, have you been offred plasmaferes?