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@austinallen1797 2 күн бұрын
a 16 year old that i know has acute flaccid myelitis. He was coming to the gym with me before it struck him. Everyone is devastated. Hes paralyzed
@dewilong1517 Ай бұрын
Hi I’ve been diagnosed with two lesions at C2-5 with myelitis now on a routine mri there is a shadow in my cord near the lesions I’ve had two blood tests anti mog and NMO waiting for the results I really like your videos and also inspired by them however waiting for results is not easy how can I contact you directly Thanks DEWI
@palledadhananjaya2166 Ай бұрын
I have Anti MOG positive eye vision down
@chyondas245 2 ай бұрын
I want to know if this MOGAD, problem will continue forever or will be fixed. I am a MOGAD patient.... Please help .
@losofloxks8597 2 ай бұрын
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 💔💔💔
@malakkheder5493 2 ай бұрын
God bless you . اكتب من فانكوفر كندا جزاك الله خيراً . اللهم بارك في كل من عمل عملاً صالحاً .
@kerryhughes4475 2 ай бұрын
Covid vaccines had no reactions!! Thanks for sharing
@MyMyelitis 2 ай бұрын
Thanks for sharing your experience
@dilnadivakaran5187 3 ай бұрын
First of all, thanks for making this video regarding your experience. This is really helpful to those who also face this same situation. My sister-in-law (25 years old) was also diagnosed with MOGAD disease in July 2023. And she is currently taking medicine, mycophenolate mofetil (an immune suppressant). Now she is planning to have a baby, but her doctor advises that it is not safe to get pregnant during this treatment. And she was also worried that if she got pregnant in the future, the same condition would occur to the baby.
@MyMyelitis 2 ай бұрын
Hi, I think I responded to your message on Instagram. Hopefully your sister in law has found a resolution
@BernadetteDevlin-l6w 4 ай бұрын
Very well spoken ❤️😘
@MyMyelitis 2 ай бұрын
Thank you for the kind comment. I hope you found the video useful
@102rohanunde3 4 ай бұрын
Hii bro my father had optic nurities in right eye blurry vision and doctor said mog positive and they give IPCA MMF 500 ( immunosuppression) is good for long time and is any chance in future got attack ?
@joehaveaheart4088 4 ай бұрын
Good informative video. Thanks.
@MyMyelitis 2 ай бұрын
Thank you for the kind comment. I’m glad you found the video useful
@joehaveaheart4088 4 ай бұрын
Did you have any lesions or scaring on your spine? One definition of TM I heard was scaring across 3 vertebrate. If yes, can u identify which vertebrate and whether it was on one side, both sides or completely around the spine? I have scaring T8 - T10 and while they originally thought it was limited to my left side (and symptoms located mostly on left side) I now have symptoms on the right side also (weakness and numbness in legs, back, core and arms/hands) and it continues to get worse even after steroids and plasma exchange. I’m hopeful I may have a similar recovery as you.
@vallisdiaries3062 4 ай бұрын
Hi. I've been tested positive for MOG recently. I have walking difficulty and the doctor says I have transverse myelitis as a result of MOG. He has advised me to start taking steroids but I am very scared. Please advise.
@JyotshnaBanikya 5 ай бұрын
Hii sir
@joehaveaheart4088 5 ай бұрын
Helpful info. Keep the videos coming.
@joehaveaheart4088 5 ай бұрын
Good video. I was recently diagnosed and had the same problem digging through the scientific papers.
@Skinner716 5 ай бұрын
Steroids + IVIG treatments worked wonders for me
@raghuram.nraghu8549 5 ай бұрын
Congrats brother ❤ on your CA
@horatiu2003 5 ай бұрын
Had a longitudinal myelitis after my COVID vaccine, positive anti-mog. Didn't have any symptoms for 3 years, but recently I had an MRI just to check, and found a small lession and no symptoms. Took suppresive corticosteroids just in case. Thank you for your channel, makes me feel less alone with this disease. Keep up the amazing work!
@Skinner716 5 ай бұрын
Was hospitalized for 6 days for this and had multiple tests done and it was found in my blood. I’ve done IVIG treatments this past week and my eyesight is beginning to come back
@chixbleau7321 16 күн бұрын
How is IVIG working for you?
@__alfonso__R 5 ай бұрын
Glad to here you recover well.... I was diagnosed last year on the 3 December 😢happend suddenly.. Was hospitalised for 21days after intensive steroids treatment.I was completely paralysed for waste down for about 10days. But my body reacts good on the treatment and it saved me. Currently coping well and everyday is, still a, challenge. Still struggle with my bladder bt also managed to control it now. I would like to know what type off supplements do you take. Cause I am struggle hugely with nerve damage. Which cause mainly shock waves in my body promptly on my right side,from my torso to my legs. Hope 2 hear from nd keep well.. Do belive we can and will beat this🙏
@xp_bv 6 ай бұрын
Hello my friend how are you? I have been positive for Mog for a year. I am from Iraq and I am 18 years old. The ratio is 1:1000. Is this disease chronic?
@AZEZ1_PLATFORM 2 ай бұрын
تتكلم عربي؟
@haktaninam4409 6 ай бұрын
Hello, I have just been diagnosed with mogad. Methylprednisolone and plasma exchange were performed as attack treatment and I recovered. I was told that I will be treated with rituximab afterwards, but I am afraid because it is a chemotherapy drug. Has anyone seen any side effects after this drug?
@Harsh-z9c 6 ай бұрын
Hello bro my mog titer is 1:10 ( positive) what is its mean?
@MyMyelitis 5 ай бұрын
Hello. A 1:10 titre is a weak positive providing it was done using a cell based assay
@manishYadav-nd3ij 5 ай бұрын
It is dangerous for people weak positive
@Harsh-z9c 5 ай бұрын
Thanks brother ❤
@angelj.2051 6 ай бұрын
mog mog mog
@han5emn00r 6 ай бұрын
U can do it!!!
@MyMyelitis 5 ай бұрын
Thank you for the support!
@coltford7624 6 ай бұрын
Hello all, I am in the hospital now with MOGAD. Just found out I have it. Thanks for taking the time to post these videos.
@MyMyelitis 5 ай бұрын
I hope you’re recovering well and I’m glad the videos are useful!
@Ane127 6 ай бұрын
Get a homeopath.
@MyMyelitis 6 ай бұрын
What type of homeopath do you suggest?
@austinjohnson7746 6 ай бұрын
keep on keeping on brother congrats
@MyMyelitis 6 ай бұрын
Thank you, I hope you’re doing well
@Harsh-z9c 6 ай бұрын
Please help aal medicine azaron mmf and ivig fail should I try tocilizumab mog + optic neuritis
@MyMyelitis 6 ай бұрын
I’ve heard of to tocilizumab working for some people. It could be worth a try if the others have failed
@Harsh-z9c 6 ай бұрын
Please help me my all treatment fail azaron mmf and ivig should I try tocilizumab I am mog positive last 2year my left eye damage due to many attacks now I taking 10mg steroid 1000mg mmf and 1g per kg ivig but now I feel blurred vision in both eye please suggest me something from your experience
@marilynquintana8540 6 ай бұрын
Hi My Name Is Marilyn I Have The Condition I Living Puerto Rico There Not That Here I Need To Know more You Help Me
@MyMyelitis 6 ай бұрын
Hi Marilyn, what treatment options do you have available in Puerto Rico?
@supersunshinex3 6 ай бұрын
Congratulations Scott!!
@MyMyelitis 6 ай бұрын
Thank you!
@msandvsg 6 ай бұрын
Thank you for being so open and honest💙, congratulations on your new qualifications 👨🏻🎓🧡
@MyMyelitis 6 ай бұрын
Thank you so much! I’m glad you enjoyed it
@Gravesfam 6 ай бұрын
I tested positive a week ago and was told today I had mogad. I started my first day of oral steroids today. Legs are really weak. Arms are weak and my vision is really blurry. I have mri scans in 3 weeks to check my spine.
@MyMyelitis 6 ай бұрын
Sorry to hear about your diagnosis. I hope the oral steroids can clear some of it up. The side effects are not ideal but it tends to do a great job in reducing inflammation
@Gravesfam 6 ай бұрын
@@MyMyelitis thank you. What kind of side effects do you usually notice?
@jfjejkejf 6 ай бұрын
I'm glad to hear news about you again. Congratulations on all the good things that are happening to you. Good luck in your new project!
@MyMyelitis 6 ай бұрын
Thank you! You too!
@Gravesfam 7 ай бұрын
Just tested positive for a 1:32 titer..
@MyMyelitis 6 ай бұрын
1:32 is quite low for a titre level. Do you know if they used anything else for your diagnosis?
@Gravesfam 6 ай бұрын
@@MyMyelitis I just started on steroids yesterday.. I have mri of the spine in 3 weeks. I had my first flare up about 2 months ago.. couldn’t walk at all my legs completely gave out on me was in a wheelchair . I finally regained my strength to walk. Now it’s coming back and into my arms and eyes. I have a mri of the spine in 3 weeks. Then one specifically for the orbits of my eyes.
@amyward8639 7 ай бұрын
My son has MOG and he will NEVER get that jab. Infections, viruses and vaccines are all triggers for relapsing. Facts. He did get the meningitis vax last summer but I was scared to death. But no seasonal vaccines.
@patgambino1420 7 ай бұрын
I have mog antibody disease and had transverse myelitis optica. i would like to chat with people about this. i am in canada.
@MyMyelitis 6 ай бұрын
Have you checked out some of the support groups for MOGAD? Mymyelitis will also be launching a community very soon too!
@patgambino1420 6 ай бұрын
I would like to join it. Thanks
@edithreyboneria7722 7 ай бұрын
Hello hope you answer my question this sick what is the cause or where they get i'm a filipina from philippines my nephew was in hospital until now did not diagnosis his sick.but doctor written is Mogad.please reply he was in hospital march 3 2024.thank you for the help😢
@MyMyelitis 6 ай бұрын
I’m sorry to hear about your nephew. We do not know the cause of MOGAD. Some people have something happen shortly before their episode but that may be a trigger rather than a cause of MOGAD
@saikatdiary92 7 ай бұрын
My wife 32 years suddenly optic neuritis. She treated in steroids and recover within 1 month but after 3 month blood test result MOG positive. What is the next treatment procedure? Is it dangerous? Is it curable? I am very tensed.
@MyMyelitis 6 ай бұрын
I’m sorry to hear about your wife. A positive mog test is not necessarily a bad thing. Some healthy people can test positive for antimog and it doesn’t mean the optic neuritis will definitely happen again. If any new symptoms appear or optic neuritis comes back you need to seek medical help as soon as possible. There is no cure but with quick steroid treatment recovery tends to be good
@wellemfernandes 7 ай бұрын
Olá Scott! Sou Wellem e moro no Brasil, meu primeiro exame foi OCT , porque perdi a capacidade de ver cores vermelhas e verdes. Sou Mog+ mas o ataque inicial foi Neurite Bilateral, na ressonância das orbitas apresentou alteração nos 2 nervos ópticos. Somente apos internação que fiz exame Anti-Mog.Obrigada. Foi um longo caminho para descartar esclerose Múltipla.
@MyMyelitis 7 ай бұрын
Hi Wellem. I’m glad you were able to get a diagnosis. I hope you’re doing well!
@wellemfernandes 7 ай бұрын
Parabéns por ter esta iniciativa! Sou do Brasil, sou Mog + há 2 anos.Tive entre outros. Sintomas Neurite Bilateral(afetou minha visão) .Tenho pesquisado muito e encontrei seu canal.Muito esclarecedor.Obrigada❤
@MyMyelitis 7 ай бұрын
Thank you! I’m glad you find the videos useful. It motivates me to make more
@wellemfernandes 7 ай бұрын
Sou a Wellem sou de Campo GRANDE-MS (Brasil) teste do Mog : Reagente (1:100) segue a metodologia recomendada pelos consensos internacionais para vários autoanticorpos neuronais - a imunofluorescência indireta em células transfectadas (CBA, de cell based assay) com o soro obtido de sangue periférico.
@MyMyelitis 6 ай бұрын
Hi Wellem, thank you for sharing.
@raghuram.nraghu8549 8 ай бұрын
Hii Bro, It's been 9 months MOG positive. I'm taking Tocilizumab injection as advised by doctor. Still It is very slow recovery but my bladder is not at all improved and I'm suffering to do motion 😢. Low strength in boby. Feeling very bad about it.
@MyMyelitis 6 ай бұрын
Sorry to hear that Raguhuram. It’s good that recovery is happening but it can be slow. All I can suggest is to keep doing light exercise and stretching. Have you tried self catheterisation for the bladder issues?
@raghuram.nraghu8549 6 ай бұрын
Yes I tried self catheterization but it was paining so i left using that.
@VijayPatil-gw5qp 8 ай бұрын
My wife is mog positive
@MyMyelitis 8 ай бұрын
I hope your wife is managing okay
@bridiellewellyn8469 8 ай бұрын
Mogad since 2010 and take Azathioprine, then high dose steroids during relapses. was antibody free for a couple of years then positive again. Was told this was highly unusual. still suffer daily but I’m alive and can enjoy life
@MyMyelitis 8 ай бұрын
Thank you for sharing. I’ve heard of people going from negative to positive but I’m not sure if it has an impact on relapses or symptoms
@zafers74 8 ай бұрын
When did they diagnose your disease?
@MyMyelitis 8 ай бұрын
I was diagnosed with MOGAD in May 2020
@GhumakkadRkv 8 ай бұрын
Im suffering MOGAD Since 6 Months
@MyMyelitis 8 ай бұрын
How are you managing with your MOGAD?
@saichandsaichand3878 6 ай бұрын
Me from 10yrs.
@shivamsupershoppe5870 8 ай бұрын
I also have mog doctor are advising me to take immuno suppresors for lifelong is there any other method
@MyMyelitis 8 ай бұрын
Yes, I have not had an episode since 2020 and since testing negative for MOG antibodies I decided to stop using immunosuppressants. It’s an important decision to make so I would recommend talking it through with your doctors