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!
Yessss please!!! I need help. While I am blessed to have doctors that listen to me and guide me according to their knowledge and my body I can never have enough insight. I was misdiagnosed with MS and learned I have NMOSD after being on Kesimpta for an almost two years and getting worse. I have found little to nothing online about NMOSD support groups and etc like I did for MS. So much so I’m like we need to change that ASAP. Your video was a HUGE start. It was soooo needed and surely on time for me. I understand you focus on MS but whatever knowledge you can continue providing on NMOSD is greatly appreciated 😊
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.
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 🧡🇨🇦🇨🇦
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 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.
Thank you Dr Boster - fascinating video! Such an interesting comparison of two similar but clearly different conditions. Yes to the deep dive please 😁 🔥🔥❤️🔥🔥🔥
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. 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 video. I wish there were more short videos explaining differencial diagnosis in MS, so we can understand why a certain diagnostic was chosen.
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.
@@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 🧡🧡🇨🇦🇨🇦
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!
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.
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
#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.
Not sure if you’ll see this but how about Marburg MS vs NMO. My brother was diagnosed with Marburg and a new neurologist thinks it’s NMO even though he tested negative for the antibody. It started in one eye then traveled to the other but he has regained most of his sight and is just struggling with eye control. He had hiccups too but is that also super common on and after being on e ventilator for so long? He’s recovering super well, was fully paralyzed/ blind, and stood up on his own for the first time yesterday. Thanks!
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 😎 👍
I'd like info on NMO meds, because I presented to the ER with acute lost of vision in the Right eye. 18 day LOS in hospital 5 days of 1000mg of methylprednisolone IV, then 4 PLEX procedures QOD, d/c to home. Follow instructions for immunoneurologist that didn't except my insurance. So I didn't have any Follow up. Now, My Right eyesight is going again & I'm having pain in my back & left flank. I want to know if I can manage this better on an outpatient basis. I am a single parent & these lengthy hospital stays are so inconvenient. Please help. Thanks.
Yes, interested in a deep dive if you haven't already done so. Always learn a lot from your videos and Zoom conferences, very helpful in navigating the waters of trying to get a proper diagnosis of MS versus NMO. Thanks, Dr. Boster.
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.
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?😀
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
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???
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...
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.
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.
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.
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
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.
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).
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. ❤
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 😂😂
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
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.
![Neuromyelitis Optica (NMO) [Symptoms, Diagnosis, MRI Findings, Treatment, Clinical Trial Results]](http://i.ytimg.com/vi/xBCke5TsDGA/mqdefault.jpg)
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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!
Outstanding educator, thank you for your continued commitment😍
Yes please , for the NMO deeper dive !
Yes, please do a “dig dive” in medications for NMO.
Please include the 3 new treatments as well as Rituximab!
Yessss please!!! I need help. While I am blessed to have doctors that listen to me and guide me according to their knowledge and my body I can never have enough insight. I was misdiagnosed with MS and learned I have NMOSD after being on Kesimpta for an almost two years and getting worse. I have found little to nothing online about NMOSD support groups and etc like I did for MS. So much so I’m like we need to change that ASAP. Your video was a HUGE start. It was soooo needed and surely on time for me. I understand you focus on MS but whatever knowledge you can continue providing on NMOSD is greatly appreciated 😊
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.
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.
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 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.
Yes more information
What does it mean if I’ve tested for NMO twice and results came back borderline?? 🤷♂️
Deeper dive please!
Nmo please deeper dive
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!
Great video. Invaluable for us going through hard times. Thank you 🙏
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?
genius video. You are an amazing teacher and expert. Best video out there about this topic. thanks so much.
Please do a follow up on the new treatments plus old treatments (rituximab)!
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'm wondering if it's possible to have both MS and NMOSD. That would be very disheartening.
I nervously wondered the same thing, Andrew
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 video. I wish there were more short videos explaining differencial diagnosis in MS, so we can understand why a certain diagnostic was chosen.
I would be very interested in treatments for NMO. I have a sister that I am very worried about concerning this.
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.
Are there other “twins” to MS?
Please expand on the medical information between the two conditions
Yes, More info please.
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 🧡🧡🇨🇦🇨🇦
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!
Thank you! Literally searched for this yesterday.
No problem!
Thank You for another great video.
Thanks for watching!
Why would someone prescribed satralizumab to someone with hypogammaglobulinemia?
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
Thank you, NMO TALKS
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
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 🙏
#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.
Please post a deep dive of NMO! I was diagnosed at 14 with NMO! 💚
Not sure if you’ll see this but how about Marburg MS vs NMO. My brother was diagnosed with Marburg and a new neurologist thinks it’s NMO even though he tested negative for the antibody. It started in one eye then traveled to the other but he has regained most of his sight and is just struggling with eye control. He had hiccups too but is that also super common on and after being on e ventilator for so long? He’s recovering super well, was fully paralyzed/ blind, and stood up on his own for the first time yesterday. Thanks!
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 😎 👍
I'd like info on NMO meds, because I presented to the ER with acute lost of vision in the Right eye. 18 day LOS in hospital 5 days of 1000mg of methylprednisolone IV, then 4 PLEX procedures QOD, d/c to home. Follow instructions for immunoneurologist that didn't except my insurance. So I didn't have any Follow up. Now, My Right eyesight is going again & I'm having pain in my back & left flank. I want to know if I can manage this better on an outpatient basis. I am a single parent & these lengthy hospital stays are so inconvenient. Please help. Thanks.
Lewis Kevin Anderson Paul Jones Jose
Yes, interested in a deep dive if you haven't already done so. Always learn a lot from your videos and Zoom conferences, very helpful in navigating the waters of trying to get a proper diagnosis of MS versus NMO. Thanks, Dr. Boster.
This was an excellent comparison video !
#Sharingiscaring
❤
Thank you for giving other alternatives to compare to MS.
You are so welcome!
I love that you talk to us as though we have a brain. Not everyone does. ❤️
Can you have NMO (AQP4 positive) with no brain/spinal cord lesions?
Please make more information videos on NMO.
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.
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?😀
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!
Thank you Dr. B. You have save my life!
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
Yes, would you make a video on NMO treatments.
What is the life expectancy of nmo
Lauryn Field
Interested in NMO
Can nmo cause cough
Can a patient have both NMO and MS?
Frami Springs
Corkery Lake
😥
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???
I’m interested in more info on NMO, which is currently my leading dx over MS.
Yup one diagnosed Nm an one Ms I'm walking but limited . First severe onset at 57
+
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...
Be 🙏well Doc
Thank you
Please continue with neuro Imaging and drugs that can help people with NMO
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.
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.
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.
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
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.
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).
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. ❤
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 😂😂
Wonderful video again. Thank you 👍
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
Good morning Dr Aaron very interesting video and thank you very much for the information
I’m interested in learning more. Thank you!
NMO medicines would be of interest. I have Never been tested but I felt that Avonex made me worse.
Yes please do a video on the medication for NMO.
What if I’m seeing phosphenes?
Thank you.
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.