So pleased to hear you're finally testing negative. I'm waiting for my bloods to come back and I'm hoping for the same result. Its so kind that you intend to stay involved with the MogAd community - having a patients point of view of what you're going through makes you feel less alone. Best of luck with your exams!!
Thank you, I hope your result comes back negative too! Yes, that was a big part of my decision to keep with it. Not having a patient telling their story was the main motivator for me to start this channel so it makes sense to continue. Thankfully I found out on Monday I passed my exam so I should be posting more regularly going forwards!
@@sophi9358 Yes, I was very happy with the result. Thank you so much! I'm hoping there will be much less stress now going forwards which should help the MOGAD too
@@MyMyelitis seriously, bro, you help me more than you could ever imagine. After coming out of ICU felt so alone with this. Then I came across your page and was like 🙏🏼 keep excelling, my boy
I hope you’re still feeling great and doing well. Have you finished your exams and passed them. Please keep posting, I have recently been dealing with my mother being diagnosed with MOG antibodies, Demyelination of the central nervous system. Your videos have helped us to understand how this will affect her health and possible outcomes and treatments. Thank you so much. Please stay healthy.
Hi Thomas and thank you for the kind comment. I’m happy my videos have been helpful to you and your mother. I hope she is doing well managing MOGAD. I did manage to pass my exams and I will be starting to post videos regularly starting next week so stay tuned :)
Great News For You Mate! I have MOGAD also..I’m on IVIG treatments once a month..Just had my second infusion..I have been thinking about getting another MOG antibody test..knowing that it could come and go..Good Luck To you ..Stat Healthy..Good Luck on your last exam
Thank you Danielle. For support groups, a lot on Facebook are set up as groups where you can post and comment on. The MOG Project and the SRNA also host support group meetings on Zoom. I have a link on my website to most of them here - mymyelitis.com/mog-antibody-disease/support-group/
Hi Scott! I recently got diagnosed with this and I'm so glad I found your channel. I hope you're doing fine. I don't know what's going on with me, I have so many questions and I'm just confused, my eyes hurt. I'm taking the steroids but i don't know the do's and don't. I don't even know if it's appropriate to rant like this here. i'm sorry. i'll be watching your videos to get more clarity on the matter. thanks for sharing your story. means a lot!
Hi Samriddhi. I’m sorry to hear about your diagnosis but glad you found your way here! I can try answer your questions if you’d like to ask them via DM on Instagram, my username is the same on there as here. I hope your recovery goes well!
I’m currently got the disease came in to hospital on 24th of the September with same Symptoms as you and got diagnosed 3 weeks later. I’m due to go to dewsbury rehab had a bit of a journey on the ventilator
Hi Bro, I'm 31 years old. Three months back I got diagnosed Anti body ADEM positive. And I'm facing many issues. Doctor advised to take Tocilizumab 400 MG injection for the treatment.
I’m sorry to hear that. I’m not too familiar with Tocilizumab but I have heard it used to treat MOGAD in a few cases. How is the treatment going for you?
@@MyMyelitisThree tocilizumab injections taken till now.. Still Im not having control on my bladder and motion.. It is very difficult to manage.. Just i need to know that how many months it took to clear bladder and motion issues for you.
My motion issues took around 3-6 months to recover. I did stretches and exercise everyday until my balance and strength was okay. I’m still having bladder issues now but it’s not too bad. For the first 6months or so I was self-catheterising which helped. After 2 years I don’t have to use catheters too much anymore but it took me a while to get to this point
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.
Hii Scott// i hope ur fine after recovery from MOG. My wife is suffering from MOG i.e also vision, weakness, vertigo symptoms. I've a little baby so we very scared about that disease, treatment and medicine facilities not in our country. So, it is request to please help and give some suggestion for cure from MOG
Interesting about testing negative, still a grey area for MOG what it really means/says. Smoldering diseases. Diagnosed with MOG Since October 2021. Using 200 mg azathioprine a day. Keep up the good work Greetings from Rotterdam, The Netherlands
Thank you for your kind words! From what I understand testing negative is somewhat significant but I have heard of 'smouldering' in other conditions such as MS so I guess it could be possible with MOGAD too. I hope Azathioprine works for you whilst still keeping infections away. Apart from that, it was a great treatment for MOGAD in my case.
So pleased to hear you're finally testing negative. I'm waiting for my bloods to come back and I'm hoping for the same result. Its so kind that you intend to stay involved with the MogAd community - having a patients point of view of what you're going through makes you feel less alone.
Best of luck with your exams!!
Thank you, I hope your result comes back negative too! Yes, that was a big part of my decision to keep with it. Not having a patient telling their story was the main motivator for me to start this channel so it makes sense to continue. Thankfully I found out on Monday I passed my exam so I should be posting more regularly going forwards!
@@MyMyelitis that's fantastic! And to do so while dealing with all the stress - both physical and mental - amazing achievement!! Huge congrats 👏
@@sophi9358 Yes, I was very happy with the result. Thank you so much! I'm hoping there will be much less stress now going forwards which should help the MOGAD too
Hello I’m So Happy For You
Thank you so much!
That is absolutely fantastic 😊scott thankyou for all your videos u really have given people and myself hope,
Your a star 🎉
Thanks Chris! These messages definitely make it easier to keep making videos. I'm excited to help others and see where this could lead :)
Bro im so happy to hear that for you! You were literally the first person I found about this during my diagnose.
Thank you so much. I'm glad the videos have been useful for you. It really helps keep me motivated to continue making them :)
@@MyMyelitis seriously, bro, you help me more than you could ever imagine. After coming out of ICU felt so alone with this. Then I came across your page and was like 🙏🏼 keep excelling, my boy
That's really great to hear. Thankfully I passed my final exam so I will have more time to make videos going forward. I hope you're doing well.
So happy for you ❤️
Thank you so much for your kind comment! :)
What wonderful news, I am so glad you are going forward. You are a warrior. ❤
Thank you so much!
I hope you’re still feeling great and doing well. Have you finished your exams and passed them.
Please keep posting, I have recently been dealing with my mother being diagnosed with MOG antibodies, Demyelination of the central nervous system. Your videos have helped us to understand how this will affect her health and possible outcomes and treatments. Thank you so much. Please stay healthy.
Hi Thomas and thank you for the kind comment. I’m happy my videos have been helpful to you and your mother. I hope she is doing well managing MOGAD.
I did manage to pass my exams and I will be starting to post videos regularly starting next week so stay tuned :)
Great News For You Mate!
I have MOGAD also..I’m on IVIG treatments once a month..Just had my second infusion..I have been thinking about getting another MOG antibody test..knowing that it could come and go..Good Luck To you ..Stat Healthy..Good Luck on your last exam
Thank you! Just be aware some treatments can affect MOG antibody levels. I hope the IVIG manages to stop any further attacks
Who do you recommend as far as support groups go?
I’m so happy for you.
Good luck with your exams! You got this
Thank you Danielle. For support groups, a lot on Facebook are set up as groups where you can post and comment on. The MOG Project and the SRNA also host support group meetings on Zoom.
I have a link on my website to most of them here - mymyelitis.com/mog-antibody-disease/support-group/
Hi Scott! I recently got diagnosed with this and I'm so glad I found your channel. I hope you're doing fine. I don't know what's going on with me, I have so many questions and I'm just confused, my eyes hurt. I'm taking the steroids but i don't know the do's and don't. I don't even know if it's appropriate to rant like this here. i'm sorry. i'll be watching your videos to get more clarity on the matter. thanks for sharing your story. means a lot!
Hi Samriddhi. I’m sorry to hear about your diagnosis but glad you found your way here! I can try answer your questions if you’d like to ask them via DM on Instagram, my username is the same on there as here. I hope your recovery goes well!
@@MyMyelitis Thank you so much for replying.
I’m currently got the disease came in to hospital on 24th of the September with same Symptoms as you and got diagnosed 3 weeks later. I’m due to go to dewsbury rehab had a bit of a journey on the ventilator
Sorry to hear about your diagnosis. I hope you’re recovering well! Rehab sounds worthwhile if you had serious symptoms and I hope it helps
Ay Have MOG. Puerto Rico
I'm sorry to hear about your MOG diagnosis. Are you managing okay?
Hi Bro, I'm 31 years old. Three months back I got diagnosed Anti body ADEM positive. And I'm facing many issues. Doctor advised to take Tocilizumab 400 MG injection for the treatment.
Three months back I got diagnosed Anti body ADEM positive.
I’m sorry to hear that. I’m not too familiar with Tocilizumab but I have heard it used to treat MOGAD in a few cases. How is the treatment going for you?
@@MyMyelitisThree tocilizumab injections taken till now.. Still Im not having control on my bladder and motion.. It is very difficult to manage.. Just i need to know that how many months it took to clear bladder and motion issues for you.
My motion issues took around 3-6 months to recover. I did stretches and exercise everyday until my balance and strength was okay.
I’m still having bladder issues now but it’s not too bad. For the first 6months or so I was self-catheterising which helped. After 2 years I don’t have to use catheters too much anymore but it took me a while to get to this point
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.
Hii Scott// i hope ur fine after recovery from MOG. My wife is suffering from MOG i.e also vision, weakness, vertigo symptoms. I've a little baby so we very scared about that disease, treatment and medicine facilities not in our country. So, it is request to please help and give some suggestion for cure from MOG
Hi, at the moment there is no cure for MOGAD. But there are medications which can prevent further relapses from happening
Congrats on your negative test, I hope your attacks are behind you!
Thank you, I hope they are too!
Interesting about testing negative, still a grey area for MOG what it really means/says. Smoldering diseases.
Diagnosed with MOG Since October 2021. Using 200 mg azathioprine a day.
Keep up the good work
Greetings from Rotterdam, The Netherlands
Thank you for your kind words!
From what I understand testing negative is somewhat significant but I have heard of 'smouldering' in other conditions such as MS so I guess it could be possible with MOGAD too.
I hope Azathioprine works for you whilst still keeping infections away. Apart from that, it was a great treatment for MOGAD in my case.
Hi.want to talk
@@MyMyelitis azathioprine works fine for me. No relapses (monophasic) untill now After two years. Stopped with baclofen six months ago.
Hi, you can send me an email here - info@mymyelitis.com
That's great, I'm glad it has helped you stay relapse free