I'm 14 and had MOG from ages 11 to 13 and everyone thought I was lying until I met doctor levy in boston and found IVIG, and I am now in a state of remission and living my life.
Hi Katie, we are glad you found the presentation helpful! If you aren't already a member, please consider becoming a member of SRNA. We are a nonprofit that supports people with MOG antibody disease and other rare neuroimmune disorders. Membership is completely free and allows you to stay informed on the latest research, news, information, and events. You can join here: wearesrna.org/join/
Thank you for this presentation. My daughter (10 at the time) had a seizure that was caused by a suspected tumor in her parietal lobe which turned out to be a demylenating lesion (biopsy was done). She can not get a spinal tap due to Chiari malformation. She is a year out from the seizure with no symptoms and we finally saw a specialist who believes she had MOGAD (not clinically isolated syndrome).
Hi Shannon, thank you for sharing about your daughter; we're so sorry to hear about her diagnosis. If you're not a member already, please consider joining SRNA. Membership is completely free and allows you to stay informed about the latest information and to connect with the rare neuroimmune community. You can join here: wearesrna.org/join/.
my wifes neurologist had her be on iv steroids for a few days and she weny home after feeling better but a few months later the pain came back worse then before and weve been going to hospital left and right and all they did was give gabapentin and pain meds barely got rituximav infusion which is not helping much and we dont know what to do her eye pain wont go away
I’m hoping to get this test. AQP4 was negative. I suffered a sudden neurological attack with double vision, nerve pain, tinnitus, vertigo, involuntary convulsions (idk if they were seizures), and other things. I live rurally and good medical care or experts in neurology are hard to come by. I was determined not to have MS. But I am suffering from random flares of muscle spasticity, nerve pain, and other issues. My neurologist just said my mri and ekg were clear and so they weren’t going to investigate further but the pain can become pretty intense during these flares
My mom is currently having Mog her vision is 50 percent and her feets are having a burning sensation doctors are advising immuno suppresers what should i do plz reply
Hello, we're sorry to hear about your mom's diagnosis. Please email us at info@wearesrna.org, and we will try to direct you to resources that will help answer your questions.
Hello, if you're not already, please consider becoming a member of SRNA. Membership is completely free and allows you to stay informed about the latest information, events, news, and research. You can join here: wearesrna.org/join/
Hello, we asked Dr. Levy, and here is his response: "While an attack associated with MOG has the potential to be fatal based on location and severity of the attack, MOGAD in and of itself is not considered to be a fatal disorder. We also don’t entirely know the risk of recurring attacks in MOG, as we know they will occur in NMOSD without ongoing treatment." If you have any further questions, please feel free to email us at info@wearesrna.org
@SRNA I'm speaking on behalf of my son he is on his second lot of steroids the first never worked and they forgot to slowly take him off them he was in a Wright state he is apprehensive about having anymore steroids. Is there any diet or anything he can do he is wiped out every day
@@shelleyfarrell9626 Definitely stay away from sugars and anything that’ll mess with the stomach lining. Mainly seeds and veggies a little beef or chicken!
Hello, unfortunately, there is not currently a vaccine for anti MOG. The best way to limit damage is to receive timely acute treatments during an acute attack, and to utilize long-term preventative therapies if needed after diagnosis.
After years losing eye vision now color vision an my eye now bounces a doctor ordered full blood panel nuro doctor an i should see him this week to discuss what’s next. Edit this started when I was pregnant with my daughter 10yrs ago.
Hi Julia, we are glad to hear that you are receiving a blood panel. Please ensure you are being test for both the MOG antibody and the aquaporin-4 (NMO-IgG) antibody, as both can cause visual issues.
@@italygarcia5443 Hi Italy, please email us at info@wearesrna.org and we can direct you to resources. Please also consider becoming a member of SRNA. Membership is completely free and allows you to stay informed about the latest resources, news, and events. You can join here: wearesrna.org/join/
