Rediagnosed at 56? MOG with antibodies?

[Tawanda]

Towanda thank you so much for sharing this info, and congratulations to you getting an accurate dx! It's only taken 22 years?

I'm off to Dr Google via the NHS!

Thank you! Sadly this all came about because I started feeling simply dastardly! For a better part of the last year, I was seeking out every kind of doctor and getting every kind of test in the world for my symptoms. Instead, it is my old condition amping up and my anxiety doing a horrific number on my digestive system.

I hope I can pull up throttle on my health now that the problem appears to be correctly identified. I was on Avonex and Tecfidera ever so briefly until I got Shingles and for the past four years I have been on nothing. It terrified me to not be on a DMT but I just hated the idea of being on some risky drug with no proof of it doing anything to help! Who knew that the only drug I should have ever been on was Ritoxilumb? The predecessor to Ocrevus?

[Tawanda]

Rituximab!

Thank you! Sadly this all came about because I started feeling simply dastardly! For a better part of the last year, I was seeking out every kind of doctor and getting every kind of test in the world for my symptoms. Instead, it is my old condition amping up and my anxiety doing a horrific number on my digestive system.

I hope I can pull up throttle on my health now that the problem appears to be correctly identified. I was on Avonex and Tecfidera ever so briefly until I got Shingles and for the past four years I have been on nothing. It terrified me to not be on a DMT but I just hated the idea of being on some risky drug with no proof of it doing anything to help! Who knew that the only drug I should have ever been on was Ritoxilumb? The predecessor to Ocrevus?

Sorry, I got that wrong again...Rituximab is the correct name indeed. Marco gave me a great reply that included this:

"Could that drug be rituximab? If so, it's very similar to Ocrelizumab if that provides you any comfort.

I have been on it for several years and love it. Yes, leukemia patients often use rituximab, but many MS patients use it off-label. Rituximab has stabilized my MS where numerous other medications could not. I have two simple infusions per year and just go along living life."

[rdmc]

Yes, Marco. it is Rituximab. The predecessor to Ocrevus. My new MRI shows progression so I suppose I am better off with the 6 hour infusions twice a year than going without. It's kind of easy, though..."this is your disease and this is your drug". The end!

Glad I know what I'm dealing with. MS was the only demylenating disease I heard of up until now. Perhaps my "MS" mother had MOG antibodies, too?

Tawanda. That's what I was wondering too when reading this thread. I thought if it was a genetic issue and since your mom had MS, maybe she passed it on to you.