Rediagnosed at 56? MOG with antibodies?

[Tawanda]

The Mandell MS Center in Connecticut just gave me a new diagnosis: "MS with MOG antibodies". They just drew all kinds of blood as I am new patient. I tested positive for MOG antibodies. I was actually called in the doctors' office the next day! They didn't have this blood test 15 years ago. Traditional MS drugs of old do not work on this. Who knew

Ritoxilumb is the only drug they offer, but for being a scary infusion cancer drug, the efficacy rate is 90%. I have been misdiagnosed for 15 years.

Besides the positive blood test, I never had Oglical bands. MOG people usually don't. MSers usually do.

All new patients get the MOG test and other "new" blood tests. Diseases that present like MS but are not MS!? The only reason I found out was because I moved my business to his new place closer to home and highly regarded. Already got my money's worth!

MS has milder drugs, but at least I know what I'm dealing with.

[KoKo]

The Mandell MS Center in Connecticut just gave me a new diagnosis: "MS with MOG antibodies". They just drew all kinds of blood as I am new patient. I tested positive for MOG antibodies. I was actually called in the doctors' office the next day! They didn't have this blood test 15 years ago. Traditional MS drugs of old do not work on this. Who knew

Ritoxilumb is the only drug they offer, but for being a scary infusion cancer drug, the efficacy rate is 90%. I have been misdiagnosed for 15 years.

Besides the positive blood test, I never had Oglical bands. MOG people usually don't. MSers usually do.

All new patients get the MOG test and other "new" blood tests. Diseases that present like MS but are not MS!? The only reason I found out was because I moved my business to his new place closer to home and highly regarded. Already got my money's worth!

MS has milder drugs, but at least I know what I'm dealing with.

Thanks for sharing, Tawanda - I don't recall hearing about MOG test.

Very interesting that it distinguishes other demyelinating disorders from MS.

I found this info from the Mayo Clinic:

"Mayo Clinic has launched a first-in-the-U.S. clinical test that will help patients who recently have been diagnosed with an inflammatory demyelinating disease (IDD) but may be unsure of the exact disorder.

Neurologic-related diseases commonly affect the brain, optic nerves and the spinal cord, and this new test can distinguish other IDDs such as neuromyelitis optica, acute disseminated encephalomyelitis, optic neuritis, and transverse myelitis from multiple sclerosis (MS)."

https://newsnetwork.mayoclinic.org/d...ple-sclerosis/

Take Care

[Marco]

I'm sorry about the misdiagnosis and new diagnosis. I can imagine your brain might be spinning.

Don't forget to breathe. There are any number of breathing techniques that can help calm you down. I personally use the 4-7-8 technique, but find one you are comfortable with.

Ritoxilumb is the only drug they offer, but for being a scary infusion cancer drug, the efficacy rate is 90%. I have been misdiagnosed for 15 years.

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.

Again, I am sorry for what you are going through, but hopefully you're now on the right track. Please keep us updated about your journey.

I wish you well...

[Tawanda]

I'm sorry about the misdiagnosis and new diagnosis. I can imagine your brain might be spinning.

Don't forget to breathe. There are any number of breathing techniques that can help calm you down. I personally use the 4-7-8 technique, but find one you are comfortable with.



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.

Again, I am sorry for what you are going through, but hopefully you're now on the right track. Please keep us updated about your journey.

I wish you well...

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]

Thanks for sharing, Tawanda - I don't recall hearing about MOG test.

Very interesting that it distinguishes other demyelinating disorders from MS.

I found this info from the Mayo Clinic:

"Mayo Clinic has launched a first-in-the-U.S. clinical test that will help patients who recently have been diagnosed with an inflammatory demyelinating disease (IDD) but may be unsure of the exact disorder.

Neurologic-related diseases commonly affect the brain, optic nerves and the spinal cord, and this new test can distinguish other IDDs such as neuromyelitis optica, acute disseminated encephalomyelitis, optic neuritis, and transverse myelitis from multiple sclerosis (MS)."

https://newsnetwork.mayoclinic.org/d...ple-sclerosis/

Take Care

Thanks! My blood test was done at the Mayo clinc. There was this blood test too: Neuromyelitis Optica, NMO -
NMO/AQP 4 IgG, S

Also a look-alike disease (I tested negative). Things change in 15 years, eh?

[KoKo]

Thanks! My blood test was done at the Mayo clinc. There was this blood test too: Neuromyelitis Optica, NMO -
NMO/AQP 4 IgG, S

Also a look-alike disease (I tested negative). Things change in 15 years, eh?

Hello Tawanda

Yes, MS research and other demyelinating disease research, in general, seems to be moving very quickly over the past decade!

Even treatments to remyelinate our damaged nerves are currently in clinical trials.

Take Care

[Tawanda]

Hello Tawanda


Even treatments to remyelinate our damaged nerves are currently in clinical trials.

Take Care

Amen to that, sistah! MS was an orphan disease up until someone got a proper count of the persons who have it. Now that MS is mainstream, not an orphan disease, all kinds of government money has been going towards it.

Interestingly, my new neuro said that this MOG thing is currently considered a type of MS as opposed to a separate entity. My research is showing otherwise...that it's an orphan disease like MS used to be. So my guess is that they want as much funding as possible, so now that MS is getting money, keep those two letters in the title:" 'MS' with MOG antibodies!" It's kind of like the RRMS title being blanketed over us at a time when insurance companies did not want to fund PPMS and SPMS outright. So RRMS we all were!

[Tawanda]

MOG link. (You ma have to scroll down to see it)

https://msworld.org/conference-cente...-antibody-test

[KoKo]

Interestingly, my new neuro said that this MOG thing is currently considered a type of MS as opposed to a separate entity. My research is showing otherwise...that it's an orphan disease like MS used to be. So my guess is that they want as much funding as possible, so now that MS is getting money, keep those two letters in the title:" 'MS' with MOG antibodies!" It's kind of like the RRMS title being blanketed over us at a time when insurance companies did not want to fund PPMS and SPMS outright. So RRMS we all were!

This makes sense. I remember when researchers were contemplating making PPMS a totally separate disease too! They never did that, though.

Heck, they all are demyelinating diseases.

[KoKo]

https://msworld.org/conference-cente...-antibody-test

Thank you for the video, Tawanda!

Can't believe I missed it, especially when it's in our own Conference Center!

[Tawanda]

This makes sense. I remember when researchers were contemplating making PPMS a totally separate disease too! They never did that, though.

Heck, they all are demyelinating diseases.

It was my greatest dream in life to NOT have M.S.! Instead I can tell my friends and family I don't have MS anymore...just an equally horrible demyelating disease called MOG (rhymes with Fog!) that is treated with a scary drug!

My family has much MS we are part of an MS cluster family being studied at UofSF. At least I thought it was MS. They may have to rip our folder up and start a MOG cluster family study. I wonder!

[KoKo]

It was my greatest dream in life to NOT have M.S.! Instead I can tell my friends and family I don't have MS anymore...just an equally horrible demyelating disease called MOG (rhymes with Fog!) that is treated with a scary drug!

My family has much MS we are part of an MS cluster family being studied at UofSF. At least I thought it was MS. They may have to rip our folder up and start a MOG cluster family study. I wonder!

Very interesting about your family and the MS cluster study. I wonder, too, about how the MOG news will affect the study.

Can you have MS and also another IDD (inflammatory demyelinating disease)?

Not all MS'ers have the O-Bands (5 - 10% don't).

[Tawanda]

Very interesting about your family and the MS cluster study. I wonder, too, about how the MOG news will affect the study.

Can you have MS and also another IDD (inflammatory demyelinating disease)?

Not all MS'ers have the O-Bands (5 - 10% don't).

Yes, you can have both MS and MS with MOG antibodies, but the statistic I read was like 5%. Not common is my guess. So there are the 5-10 percent MSers without O Bands, but now I think if you fall into this group you should really be tested for MOG with antibodies (if they haven't already been tested). What if they too should be on a different drug like me? Or currently taking MS drugs that don't help and may even harm.

I think we have only begun to scratch the surface...

[KoKo]

So there are the 5-10 percent MSers without O Bands, but now I think if you fall into this group you should really be tested for MOG with antibodies (if they haven't already been tested). What if they too should be on a different drug like me? Or currently taking MS drugs that don't help and may even harm.

Good point Tawanda, especially regarding the most appropriate drug therapy to be used.

[MSW1963]

MOG= myelin oligodendrocyte glycoprotein

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!