Neuromyelitis Optica (NMO), A Nasty Cousin of Multiple Sclerosis
Vložit
- čas přidán 14. 06. 2024
- In this video, I demystify Neuromyelitis Optica Spectrum Disorder (NMOSD), a nasty cousin of Multiple Sclerosis
Sign up for the Monthly "Boster Corner" Newsletter: bosterms.com/get-boster-news/
The Boster Center for Multiple Sclerosis accepts new consultations and is actively enrolling several MS clinical trials! www.BosterMS.com or call 614-304-3444 to schedule!
**********************************************************
COMMENT with your thoughts and questions below! I look forward to reading and responding!
**********************************************************
SHARE this video: • Neuromyelitis Optica (...
***********************************************************
FOLLOW on Twitter: / aaronbostermd
FRIEND on Facebook: / aaronbostermd
SUBSCRIBE on CZcams: / aaronbostermd
VISIT us on the web: BosterMS.com/
***********************************************************
NOTE: Make sure to talk to your provider before ANY treatment decision. We hope to educate, empower and energize those impacted by Multiple Sclerosis. This channel consists of a collection of formal lectures and informal video clips about MS to help educate others. These videos do not provide medical advice and are for informational/educational purposes only. The videos are not intended to be a substitute for professional medical advice, diagnosis or treatment. Always seek the advice of a qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read or seen in any of our videos. They are just to help educate you about the condition guys!
Sign up for the monthly "Boster Corner" news letter: bosterms.com/get-boster-news
Dr. Boster, I hope you know just how incredibly helpful you are. You give those of us with MS a great deal of information and I find the the way that you present that information to be very calming and reassuring. Thank you so much!
Yes, please do a “dig dive” in medications for NMO.
Please include the 3 new treatments as well as Rituximab!
Yes please , for the NMO deeper dive !
any video that you do, is beneficial and educational! And education is power, so bring it on! Thank You for all your work!
Wow, thank you!
@@AaronBosterMDyou speak with compassion understanding and in plan English language so we all can understand what you are trying to convey- and River is always a bonus 🧡🧡🇨🇦🇨🇦
Please do more NMOSD content. All too many MS patients have not had optimal AQP4 testing or have been treated with a therapy (both acute treatment and maintenance therapies) that often impact AQP4 test accuracy. Keep up these great videos.
Yes more information
Hi Dr. Boster, thanks for this video! It’s one of my favourites. It’s great to learn the differences between diseases with similar symptoms. When I was first diagnosed with MS I had people ask me if I was sure it was MS. They suggested it could be many other conditions. The most common thing I heard was Lyme disease. Looking forward to next weeks video.
Ya had to have so many things ruled out by my neurologist- even spinal cancer! He was very thorough and helpful! And so patient with me about everything I was so scared of the spinal tap that he gave me a Valium and took his time - gosh he was the best doctor ever- retired now but my neurologist now worked under him so I am very blessed 🧡🇨🇦🇨🇦
@@Spitfirephotographs hello to a fellow Canadian 🇨🇦. I’m happy to hear have a great neurologist in Canada considering our doctor shortages here.
@@SpitfirephotographsWhat province are you in? I’m in NS myself and just setting out on the diagnosis journey.
Thank you Dr Boster - fascinating video! Such an interesting comparison of two similar but clearly different conditions. Yes to the deep dive please 😁 🔥🔥❤️🔥🔥🔥
Well said!
Deeper dive please!
Yes, More info please.
Thank you for the video. I wish there were more short videos explaining differencial diagnosis in MS, so we can understand why a certain diagnostic was chosen.
#1- this video was really great!!#2- i fall under the 50% that subscribe. You have helped improve my life with some things!
I had to get tested for nmo because solumedrol didnt help at all and one side effect of solumedrol is temporsry blindness (it can flare optic neuritis) Which i got but in both eyes!! 😱 as you say Red Flag!!!!
My dr made me promise not to google nmo. He said its even more scary than ms. I followed his orders on that. So glad i did.
My blood test came back negative for nmo. I am so incredibly thankful for that.
THANK YOU for this video!!!! I received incredible care on diagnosis - extensive testing and treatment. However, my initial diagnosis was “NMOSD overlapping severe aggressive MS.”
This is the first time I’ve really understood why NMOSD was suspected when my AP-4 antibody was negative. I had bilateral optic neuritis, hiccups that would wake me from nighttime sleep and last for 40 minutes, longitudinally extensive spinal lesion. But I also had significant brain lesions, CSF + for oligodendrocytes. I also had low titers + for MOG.
I was immediately started on IV steroids, but receiving plasmapheresis was the major turning point in my treatment (in my mind)- since my lower extremity function improved dramatically!
I am really grateful for the explanations and education you are providing!
I had been going to a neurologist for various symptoms, and she discovered 30% nerve damage, neuropathy, hard muscles, fatigue, and lethargy that went undiagnosed or treated for over 15 years. Then at age 83, I had a major bodily attack and at the same time progressively lost sight in my right eye. It went to 95% blind and was diagnosed with idiopathic optic neuropathy by a neuro-ophthalmologist.
For over a year I have been looking for the real answer knowing the statistics on recurrence. This makes sense, that it may be NMO. I check about 10 of the boxes of the 15 possible symptoms and am seeing my Neurologist, a specialist in NMO next week, and will certainly discuss treatment. I have been tested twice for the antibody and am negative. That is so frustrating not to have an ironclad diagnosis.
Thank you for this. I believe I have NMO. I’ve been struggling with neurologist that will commit to a diagnosis. And they seem to be offended when I present my opthamoloists findings. I keep on getting IV steroids with no improvement. I’d really like to hear more about NMO treatment. And, are you taking patients? Thanks again.
Might be good to mention that some NMOSD patients do not show anti-AQP4 antibodies and are called "seronegative". Im one of them and I am currently on rituximab. Also, some NMOSD patients are also positive with whats called anti-MOG antibodies
My mother is nmo Anti-AQP4 strongly positive, Drs recommended for a Rituximab, we have not started yet, looking out for other Drs opinion. Since you have been taking Rituximab is good? Please advice
Thank you! Literally searched for this yesterday.
No problem!
Please expand on the medical information between the two conditions
I would be very interested in treatments for NMO. I have a sister that I am very worried about concerning this.
I love that you talk to us as though we have a brain. Not everyone does. ❤️
Lupus and Sjogrens for 20 years and now getting tested for NMO. Tough to hear this. I always thought I had MS symptoms for years with my legs but blamed lupus flares. I ignored it until I developed neuropathy in my feet and legs.
43%!! Yikes that is a large number of people misdiagnosed. So it isn’t standard procedure to rule out NMO during MS diagnosis?
It SHOULD be but it isn't.
I was misdiagnosed with MS and the MRI revealed that I had NMOSD Aqua 4 negative. I have been getting treatment with Ocrevus Infusions every six months. But it took yeara before the treatment began and the damage was already widespread as I had two attacks. It is awful and i pray for everyone affected. ❤
Years ago my 3rd neuro was concerned that I was misdiagnosed RRMS and wanted to rule out NMOSD. I had a severe ON in one eye with no light perception, and only slight recovery since, and no brain lesions at that time only the ON and small cervical spine and thoracic spine lesions. The AQP tests came back negative, but still wasn’t fully confident - until a brain MRI showed a new peri-ventricular lesion. Switched from Copaxone to Tysabri. Some scary moments because as you mention the treatments are vastly different and can have bad outcomes if get it wrong. 7 years NEDA on TYsabri.
What a relief to have course corrected. I'm happy for you.
Thank You for another great video.
Thanks for watching!
Please do a follow up on the new treatments plus old treatments (rituximab)!
What does it mean if I’ve tested for NMO twice and results came back borderline?? 🤷♂️
Great video. Invaluable for us going through hard times. Thank you 🙏
I'm wondering if it's possible to have both MS and NMOSD. That would be very disheartening.
I nervously wondered the same thing, Andrew
Thank you Dr. B. You have save my life!
Wonderful video again. Thank you 👍
Thank you, NMO TALKS
Good morning Dr Aaron very interesting video and thank you very much for the information
genius video. You are an amazing teacher and expert. Best video out there about this topic. thanks so much.
Yes please do a video on the medication for NMO.
Thanku Dr Boster I’ve learned so much from your videos all beneficial for people with MS. I look forward to listening. Thanku once again 🙏
I’m interested in learning more. Thank you!
I was experiencing dim vision in my right eye when I woke up, it would go away after a minute or so. Also I had some pain, It would take a neuro-ophthalmologist to identify Neuromyelitis Optica but he never determined a cause or treatment before I lost my insurance, and I don't notice it currently. I am not 100% certain I do not have MS, It is not apparent in my head, but my back has never been scanned. This all happened after bouts of intractable vomiting, a feature of my condition. Most of my doctors stopped looking after I said I was diabetic. Diabetes is the answer to any question a doctor can't answer. I have been diabetic for over 20 years, possibly my whole life, these conditions came on in the last few years. I am currently trying to get an MRI of my neck and back, I will try and get another brain scan too. I have a referral specialist working on it now
I was given a coroited sonogram yesterday by my endo where they fond blockages of 86% and 87% respectively.. I have had this test with the result 'no hemodynamically significant stenosis" 2 years ago. my doctors acted like that was a pass. It was a major red flag warning, and I kept on swimming
Thank you.
Thank you I have secondary progressive multiple sclerosis thank you for explaining the differences it pretty much let me know they DX me right I appreciate your videos
Well I went for a spinal tap and MRI and 2 weeks later found I had ms so started treatment per my neurologist but the side effects were awful. So I try to eat better and exercise as you suggested. Amen 😎 👍 it's such a blessing to have these videos about Ms and the Mylan sheets damage. Amen 😎 👍
Woahhh! I guess I have “lucked out” to only have C.R.I.O.N. While I was told I probably had MS, I received the total work up , except MRI, as I am 99.9% pacer dependent due to myocarditis. All of labs, including LP, were negative for MS. I find all this info truly helpful as my rheumatologist wants to continue following closely along with my neuro-ophthalmologist. Thanks for sharing such important and helpful info.
Be 🙏well Doc
Thank you
Please continue with neuro Imaging and drugs that can help people with NMO
Please make more information videos on NMO.
This was an excellent comparison video !
#Sharingiscaring
❤
Thank you for giving other alternatives to compare to MS.
You are so welcome!
Nmo please deeper dive
My neurologist thinks I have NMOSD although I don’t have an official diagnosis. I can’t find much info online and I have to use MS communities (that’s how I found you). Would be awesome if you can create some videos about NMOSD. I’d definitely watch them.
Hi Dr. Boster... I've got chronic uveitis & iritis (since 2005). I had the oligo bands on my spinal tap back in 2005.
My question is: can you have both conditions? Avonex made me way worse. I've always been questioned about why I have chronic iritis & uveitis. I have to use prednisone eye drops every day to keep my ocular pressures in check. This has been going on for 20 years. No one has ever been able to give me an answer as to the correlation of MS & uveitis/iritis. Should they be looking at NMO?
Thanks Dr. Boster!
Thank you for the term Transverse Myelitis. It is the vein of my existence. Slow decline since my youth, diagnosed in 2020, 54 years old. Brain fog and depression were first symptoms. Wondering mind and horrible in school. Moments of genius. Now I have at least 70% of symptoms including down there with exception of bedroom. Life well suffered.
Are there other “twins” to MS?
Yes, would you make a video on NMO treatments.
Yup one diagnosed Nm an one Ms I'm walking but limited . First severe onset at 57
+
I have, because of my MS, developed visual snow syndrome without the movie dots. It was initially thought to be NMO, but negative on the NMO specific antibodies. I do have continual degradation of my physical state due to all the damage in my cervical spine. I'm on Ocrevus and it is not doing what I hoped it would. Hopefully I can reverse some damage with a diet change and return to being a normal human. Or as close to normal as I can (whatever normal is).
Thank you for this video, Doctor. I had double vision in both eyes as well as constant hiccups and saw this is more common in NMO. My neurologist says there's no way it's not MS. Should I get a second opinion?
Hi Dr B. This is Maggie Law! It has taken me a long while to make a channel but My hubby Jim got it done. I will be watching and participating in your "Live" stream tomorrow. Please watch for me. Maybe we can "Talk" soon?😀
Hi. Im Clinicly diagnosed having ms. I did the NMO blood test about one year after my second optic neuritis, nmo result came negative. for the first optic neuritis the eye doc didn't diagnosed optic neuritis at all and now that i watched your video i remembered during my first optic neuritis i had hiccups for 24 hours. Something to think about...
Thank you for this excellent presentation on NMO. I would like to hear more about the brain MRI differences between NMO and MS (I know that you showed a few examples, but I would be interested in knowing if, for example, there are morphological differences in the appearance of lesions between the 2 conditions (or perhaps differences in where the lesions occur within the brain between the 2 conditions). Does one see "Dawson fingers" shaped lesions in an NMO brain MRI image? Does NMO, like MS, cause accelerated brain atrophy? Thanks!
Dr.boster you are a incredible neurologist.i sm a fan
I have a wuery my brain mri suggest that i have ms but other test such as spine mri,csf,blood test,ueb,perimetry all came normal and i don’t have any symptoms too apart from headache .please help diagnose
I’m interested in more info on NMO, which is currently my leading dx over MS.
i would love to hear about the medications in nmo. im thinking i have this since years and not my ms diagnosis. i just never tested positiv for aquaporin. i was on rituximab for more than a decade which helped wonders but damaged my immunesystem permanently. Now im on Aubagio but not really happy with it. Im also getting 20g of ivig every month
NMO medicines would be of interest. I have Never been tested but I felt that Avonex made me worse.
Some of us are diagnosed with TM, based on spinal MRIs, but do not have the "right" pattern of brain spots for MS, nor do we test positive for Aquaporin antibody or MOG. I have many of the symptoms of MS, but no bands in SF either. What's with us???
Regarding the hiccups that you spoke about- I get them - every time I take a drink or my first bite of food, now I do know that I have PPMS but just wondering is this just my brain 🧠 being behind the eight ball - sort of speak 😂😂
Why would someone prescribed satralizumab to someone with hypogammaglobulinemia?
Can you have NMO (AQP4 positive) with no brain/spinal cord lesions?
I think my sister may has NMO. Bc she has progressed so fast so severely and hasn’t recovered with overlapping symptoms. Infusion doesn’t work on her like me.
I have a question about MS lesions. Is it possible for a lesion seen early in MS to “disappear “ on subsequent scans?
Did they use same MRI machine for your scan? Because apparently resolution on different machines could be different and it can impact the quality of the image.
@@anastasiav626 it was the same company. It was a different office but the same company so I don’t know
What if I’m seeing phosphenes?
Can nmo cause cough
Can a patient have both NMO and MS?
Hi Doc,
Please do a deep dive. I was diagnosed with did OK on copaxone for 5 year. Then it stop working . Moved to tysabri 2006 to 2009 and did great. On avonex from 2010 to 2014 during with I got TN bad luck. O tecfidera from 14 to 22. Vumerity from 22 to now. Lots of spots on the brain stem . I was born in Africa and lived there until I was 25.
I am considering mavenclad at this point but not sure about it. I get hiccups sometimes for 24h.
I love my doctor in Seattle because when I go see him I feel that iam his only patient.
We have a 20 year working relationship but good to hear another patient. I know it's not true but that's a great feeling. I need to yell him that I love the guy
Thank u you.
AstrontSandwitch.