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.
Hi, I am an Anti MOG encephlitis with seizures patient. Currently on Phenytoin, and an extreme regime of supplements/ vitamins targeting reduction of inflammation ( regime constructed by family Rheumatologists/hepatologist). 23 hour intermittent fasting + vegetarian keto diet. Initial treatment was 5 X 1000ml steroids, 2 treatments IVIG. Reply to my comment if you have questions or advice moving forward. Thanks for the content.
@@meenakshijat2855 first symptom was a seizure. High white blood cell count in Spinal tap and scary looking MRI. The radiologist had a hunch to compare my blood to a MOGAD expression. It was confirmed at that point. After that, part paralysis, speech problems, and weakness. 5 doses of 1000ml steroids and 2 sessions of IVIG brought me back to baseline minus the muscle loss.
@@gonulkosar8533 almost 4 months now. 5 doses of 1000ml steroids helped tremendously. Anti inflammation life style is important. Keto diet, intermittent fasting, many supplements.
Hello. Has your bladder and bowel control been affected? Were they numb? Did you feel your toilet coming? If you don't feel it, how soon did you see improvement and start to feel it? It would help me a lot if you answered these questions. Thank you very much in advance.
Hello Dr. Good night my daughter ashanti Thompson she nmo she walk can't feel her legs please help me I live in Kingston Jamaica my is keneisha God bless you sir
Transverse Myelitis has no MRI findings in 40% of cases. Imaging can be useful but it’s also a crutch. I’m NMO positive with severe disease, and my radiography is clean. Also, I’m non-demographic-a young white male (military exposure). I know more about the disease then all of my providers. Trying not to die is an exceptional motivator for self educating.
@@meenakshijat2855 I had optic neuritis, first in the right eye, then the left. The right eye optic nerve atrophied but the left did regain about 70%vision. I have constant headaches, aches, fatigue, itchy skin, etc. Mum had bad transverse myelitis, with lesions in nearly the whole spine. She can't feed herself or even turn on the bed. She sweats a lot, feels like her skin is burning, always in pain, restless, moody, etc. We live in Uganda
@@meenakshijat2855 We had MRIs for the brain and spinal cord, they did Lumbar Puncture and blood tests. They tested for inflammatory markers(ANA I think) and for the antibody for Aquaporin4.
