Thank you for treating patients with urgency that are having NMO relapses and understanding that a relapse means a therapy is not working. By moving to plex when steroids are not working you are acting to prevent further or worsened disability and outcomes. THANK YOU. We need more educated NMO experts like you in the world. Much appreciation for your video content and your expertise.
You are the BEST!!!!!!! I had a stroke 3 yrs ago. So many weird symptoms since then. New MRI 3 wks ago is suggesting MS. I see Dr Lackey, Chief Professor of DUKE Neurology at Duke Clinic, Durham, NC. I see him in 2 days. The MRI report tells a lot about lesions, white matter, etc. Says suspicious for MS. I'm not sure what to expect. I am 50 yrs old. Thank you so so so much for sharing in such detail the information you do. Since the stroke I have so many random, weird diagnosis. Psudobulsbar (sp).. I take Neudexta. (I heard you talk about this in another video) I just found your channel. You will become my favorite channel!! I love your personality!.. Your excitement! Keep it up!!!
Im really glad that I found your channel! My husband is 56, was diagnosed October 2022 with PPMS. He has had problems since 2017 and 2020 an MRI showed a developing demyelinating disease, but we didn't find this out until 2022. Most of his "relapses" have been mild but April 7th he went into the hospital, I thought he had a stroke! He could barely speak, slurred, left side did not work AT ALL! He was admitted for a week and administered 5 days of IV steroids. He was discharged into rehab hospital, for 3 weeks, they did another 5 days of IV steroids and then put him on oral steroids. He still can barely walk, he uses a wheelchair, walks about 50 feet with a walker. He's now in PT/OT/ST twice a week for 12 weeks! He does have a follow up with his MS neurologist in Little Rock next month! It's the scariest thing that we have been through since his diagnosis! Your content, the way you explain things, make it easier for us to understand about what is happening, why it's happening and what he is feeling! Thank you so much!!!
Nice video. I have also tried solumedrol and PLEX for an inpatient with a severe NMO attack. I have also had some success with cyclophosphamide in very severe NMO attacks resistant to steroids and PLEX.
Thank you for explaining this. I'm seeking a diagnosis of what I suspect to be MS but it's been hard for doctors to take me seriously and it doesn't help that my symptoms were absent (AGAIN) both times I went to my neurolgist. I've been sent to an orthopedist that looked at my neck and basically told me without even running blood tests that I'm probably just defficient in magnesium and B12. My neurologist told me to take pickle juice for my reoccurring cramps and that didn't work. Every specialist so far has started out by telling me they don't understand why I'm there which is so frustrating. The one thing that finally got the rheumatologist's attention was lacey patterns all over my arms and legs ("mottled skin") that I now realize is almost always present. I've read that's rarely associated with MS but I've already been tested for Lupus and I don't have it. Have you ever seen someone with MS have livedo reticularis as an MS symptom? -PS - Not even my family seemed concerned about me until I went through a period of 3 weeks where I had trouble walking. PSS - Sorry for the long post.
Thanks for sharing info about NMO Dr. B. I was tested for NMO during my MS diagnostic journey because my main symptom at the time was vision loss. Thankfully, the AQP4 antibody test was negative, but my MS left me legally blind in my right eye.
The day after Ocravis infusion I walk well for a day or two. After that things go back to not knowing how I’ll feel at any given moment, or if I can make it to the kitchen and back to my room with a glass of water. I almost wish I could take steroids on a more regular basis. Once, about 20 years ago, I was handed a joint laced with opium. I never, in my memory, have not felt some kind of pain. That day for a few hours I felt relaxed with absolutely no discomfort, pain or vibrations moving through the body. That pretty much let me know something was way wrong. I was diagnosed very late due to years of no insurance. I feel life has no meaning a never found my purpose. But I live on for some unseen reason.
Sounds like sad life me. Try a carnivore diet. Contact Jehovah's Witnesses and study the Bible. These things have helped me. Best wishes for your recovery.
They suck! I know! I've even got a Neuro who is trying to DISPROVE one of the best MS specialists in the state of NJ. Like my guy, I only came back to your hospital bc it's closer & I wanted to discuss options other than Vumerity. I took a freaking Aleeve the other day & thought my esophagus was going to burn out. The American healthcare system is failing us. (Outside of Dr. B). Maybe he should teach a class to other physicians on how not to be an asshole
Thank you for making videos about nmo I had nmo since i was 12 now im 18 living my life going to work i was going to college but it was too stressful for me and i got to focus on my self im getting more treatment soon because they don’t want me to relapse
What a great video i can send people to explain responses to relapses. It is always difficult for me to explain what plex is. Thanks for the informative videos on NMOSD!
I think there is a misconception still about NMOSD attacks being only severe and irreversible. Yes many patients have severe attacks, but there are some cases with mild attacks over years. Also you recover sometimes, especially spinal cord attacks recover pretty markedly (from wheelchair to walking again). Last but not least NMOSD should be divided into AQP4+ , Seronegative and MOG+. F.e. MOG+ has a lot better recovery post attacks (almost similar to MS)
I love your videos- they are a wealth of information. I know you've done several videos on JCV. But can you explain PML risk after becoming JCV+ and not taking medications that put us at a greater risk, such as Tysabri? Should we continue JCV testing? I just tested positive after just 2 Tysabri infusions. I think I'm just done with medications. I don't trust anything anymore. 😔
I refuse to take any DMT that has PML as a possible "fatal brain infection", side affect? GTFO. I've NEVER heard anyone else say anything about your PML & JCV concerns & issue. I'm in a giant support group too. I'm like, "so you guys are just cool with this?" No thanks
You mean it feels like the tendons are ripping off the bones & someone is smashing your legs in with a sledge hammer right? I'm not sure about heaviness. Sometimes I feel like I forgot how to walk or something. Usually when I'm in the middle of trying to cross the street downtown lol fml
Your videos are amazing I need an M.S doctor that actually listens. I experience extreme fatigue and focus and he. Won’t give me adder-all or Ritalin. Modafinil doesn’t work.
You have to see either a psychiatrist for medication management (apparently they don't talk to you anymore. They just give you drugs) or try getting into pain management (all full). I couldn't even believe it when my MS specialist wouldn't even prescribe Lyrica or Gabapentin. I'm like ???
Thank you Dr. Boster I’m going through this now my ocrevus isn’t working this time it’s been almost 2 months I’m getting optic neuritis, dizzy , nausea , pain , I’m going to do a steroid infusion next week . I hope the infusion helps. I’ve noticed my body hasn’t been responding as well as it use to with the ocrevus . I wonder why? I’ve had so much going with my body recently.
I was diagnosed with MS in 1991. My Neurologist has tested me about 3 times for NMOSD, with results coming back borderline each time. What would you recommend for someone with these results?!? Thanks Arron ❤
Great video. I am an MS neurologist and often inform patients of your channel to educate themselves😊 I recall in one of your videos you would have low threshold to treat even a isolated sensory relapse. I recently came across this in discussion with other colleagues in patient with actively enhancing cervical cord lesion and reportedly only sensory symptoms (I didn’t see her initially). She was not given steroids and discharged without completion of brain scan which eventually showed multiple lesions including brain stem. She was severely anxious. After I spoke to her she was getting worse and thus gave her steroids and started on DMT. So im wondering if you would give steroids in such a situation as there is the argument that steroids will not impact long term disability? Thank you!
Idaho here. I have MS and I've had an attack on my Optic Nerve with partial blindess. Would I be a candidate for NMO testing? Thank you. Very informative.
My uncle was diagnosed with this after one month. He is currently still in ICU on a breathing tube. He just received his first treatment, and they are waiting to see if this works. My question is what are we to be looking for as results of the treatment working and how long will it take?
i have 2 MRI’s in a few weeks (here in Columbus, coincidentally enough) to see if i have or don’t have a neurological condition. my symptoms line up with MS. is it normal for symptoms to come and go (numbness, tingling, dead weight feeling….all on one side). sometimes they last for weeks and sometimes it comes in waves throughout the day. i’ll feel symptom free for a few hours, it comes back, goes away, comes back, etc….
Is NMO the same as CIS or Transverse Myelitis? Can MNO be misdiagnosed as MS? Is PLEX similar to IVIG? When does IVIG come in? Sorry so many questions! 😅
I so wish I lived near Columbus!!!
Dr Bostor you are amazing !! I say this every video!!!
Wow, thank you!
Watching your videos is my top most priority. Great work doctor .
Wow, thanks
Thank you for treating patients with urgency that are having NMO relapses and understanding that a relapse means a therapy is not working. By moving to plex when steroids are not working you are acting to prevent further or worsened disability and outcomes. THANK YOU. We need more educated NMO experts like you in the world. Much appreciation for your video content and your expertise.
❤❤
I am not even diagnosed with MS but had lived with symptoms for a few years now..listened to your live stream on New Years.p.s. I'm a human being😊
You are the BEST!!!!!!!
I had a stroke 3 yrs ago.
So many weird symptoms since then.
New MRI 3 wks ago is suggesting MS. I see Dr Lackey, Chief Professor of DUKE Neurology at Duke Clinic, Durham, NC. I see him in 2 days. The MRI report tells a lot about lesions, white matter, etc.
Says suspicious for MS. I'm not sure what to expect. I am 50 yrs old. Thank you so so so much for sharing in such detail the information you do.
Since the stroke I have so many random, weird diagnosis. Psudobulsbar (sp).. I take Neudexta. (I heard you talk about this in another video)
I just found your channel. You will become my favorite channel!! I love your personality!.. Your excitement!
Keep it up!!!
Im really glad that I found your channel! My husband is 56, was diagnosed October 2022 with PPMS. He has had problems since 2017 and 2020 an MRI showed a developing demyelinating disease, but we didn't find this out until 2022. Most of his "relapses" have been mild but April 7th he went into the hospital, I thought he had a stroke! He could barely speak, slurred, left side did not work AT ALL! He was admitted for a week and administered 5 days of IV steroids. He was discharged into rehab hospital, for 3 weeks, they did another 5 days of IV steroids and then put him on oral steroids. He still can barely walk, he uses a wheelchair, walks about 50 feet with a walker. He's now in PT/OT/ST twice a week for 12 weeks! He does have a follow up with his MS neurologist in Little Rock next month! It's the scariest thing that we have been through since his diagnosis! Your content, the way you explain things, make it easier for us to understand about what is happening, why it's happening and what he is feeling! Thank you so much!!!
💙💙
Thanks a lot for addressing our issues ❤ I hope there will be more upcoming videos on your channel regarding Nmosd besides ms.
Thank you! Those lines for PLEX scare me the most out the whole ordeal
Nice video. I have also tried solumedrol and PLEX for an inpatient with a severe NMO attack. I have also had some success with cyclophosphamide in very severe NMO attacks resistant to steroids and PLEX.
I've used Rituxan when a severe attack is resistant to Solumedrol and PLEX inpatient, which worked well in a few patients.
Thank you for explaining this. I'm seeking a diagnosis of what I suspect to be MS but it's been hard for doctors to take me seriously and it doesn't help that my symptoms were absent (AGAIN) both times I went to my neurolgist. I've been sent to an orthopedist that looked at my neck and basically told me without even running blood tests that I'm probably just defficient in magnesium and B12. My neurologist told me to take pickle juice for my reoccurring cramps and that didn't work. Every specialist so far has started out by telling me they don't understand why I'm there which is so frustrating. The one thing that finally got the rheumatologist's attention was lacey patterns all over my arms and legs ("mottled skin") that I now realize is almost always present. I've read that's rarely associated with MS but I've already been tested for Lupus and I don't have it. Have you ever seen someone with MS have livedo reticularis as an MS symptom? -PS - Not even my family seemed concerned about me until I went through a period of 3 weeks where I had trouble walking. PSS - Sorry for the long post.
Can relate..the neurologist I talked to said maybe I just need someone to talk to..lol..psychiatrist..he was partially correct
You do get fed up with people thinking you are a bit mad. ❤️
Thanks for sharing info about NMO Dr. B. I was tested for NMO during my MS diagnostic journey because my main symptom at the time was vision loss. Thankfully, the AQP4 antibody test was negative, but my MS left me legally blind in my right eye.
My neuro doctor is giving me imuran as my regular meds starting today. Been taking steroids for 2wks but small dose
Appreciate NMO issues.
The day after Ocravis infusion I walk well for a day or two. After that things go back to not knowing how I’ll feel at any given moment, or if I can make it to the kitchen and back to my room with a glass of water. I almost wish I could take steroids on a more regular basis. Once, about 20 years ago, I was handed a joint laced with opium. I never, in my memory, have not felt some kind of pain. That day for a few hours I felt relaxed with absolutely no discomfort, pain or vibrations moving through the body. That pretty much let me know something was way wrong. I was diagnosed very late due to years of no insurance. I feel life has no meaning a never found my purpose. But I live on for some unseen reason.
Sounds like sad life me. Try a carnivore diet. Contact Jehovah's Witnesses and study the Bible. These things have helped me. Best wishes for your recovery.
Can you explain more on what NMOSD is. Does this go along with MS, or is it something totally different. Can you have both ?
I wish you were my neurologist! My Dr barely sends 10 minutes with me! 😢
They suck! I know! I've even got a Neuro who is trying to DISPROVE one of the best MS specialists in the state of NJ. Like my guy, I only came back to your hospital bc it's closer & I wanted to discuss options other than Vumerity. I took a freaking Aleeve the other day & thought my esophagus was going to burn out. The American healthcare system is failing us. (Outside of Dr. B). Maybe he should teach a class to other physicians on how not to be an asshole
Thank you for making videos about nmo I had nmo since i was 12 now im 18 living my life going to work i was going to college but it was too stressful for me and i got to focus on my self im getting more treatment soon because they don’t want me to relapse
❤❤ good luck with everything
What a great video i can send people to explain responses to relapses. It is always difficult for me to explain what plex is. Thanks for the informative videos on NMOSD!
Excellent video Doc- easy to understand- and a great resource to share with others.
have a great week.
#StrongerTogether
Thank you kindly
What makes you choose between 3 or 5 days of steroids?? I only got 3 days with ON and new MS diagnosis.
I hope you know how important you are to us. Your videos are so valuable. Thank you❤️❤️❤️
HI from Israel thanks for the interesting video
I think there is a misconception still about NMOSD attacks being only severe and irreversible. Yes many patients have severe attacks, but there are some cases with mild attacks over years. Also you recover sometimes, especially spinal cord attacks recover pretty markedly (from wheelchair to walking again). Last but not least NMOSD should be divided into AQP4+ , Seronegative and MOG+. F.e. MOG+ has a lot better recovery post attacks (almost similar to MS)
Your videos are great i am making year project about ms and your videos really help me🧠💖
Thank you Dr Boster awesome video as always brilliantly explained and informative! 🔥🔥❤️🔥🔥🔥
I love your videos- they are a wealth of information. I know you've done several videos on JCV. But can you explain PML risk after becoming JCV+ and not taking medications that put us at a greater risk, such as Tysabri? Should we continue JCV testing? I just tested positive after just 2 Tysabri infusions. I think I'm just done with medications. I don't trust anything anymore. 😔
I refuse to take any DMT that has PML as a possible "fatal brain infection", side affect? GTFO. I've NEVER heard anyone else say anything about your PML & JCV concerns & issue. I'm in a giant support group too. I'm like, "so you guys are just cool with this?" No thanks
Thank you Dr. Boster! That was a great presentation!!!!
Thank you Dr B
Can you do a video on why people jave heaviness in their legs?
Same here
You mean it feels like the tendons are ripping off the bones & someone is smashing your legs in with a sledge hammer right? I'm not sure about heaviness. Sometimes I feel like I forgot how to walk or something. Usually when I'm in the middle of trying to cross the street downtown lol fml
Your videos are amazing I need an M.S doctor that actually listens. I experience extreme fatigue and focus and he. Won’t give me adder-all or Ritalin. Modafinil doesn’t work.
You have to see either a psychiatrist for medication management (apparently they don't talk to you anymore. They just give you drugs) or try getting into pain management (all full). I couldn't even believe it when my MS specialist wouldn't even prescribe Lyrica or Gabapentin. I'm like ???
😮😮😮 I hope someone comes up with a cure and 'PLEX' becomes a chapter in the history books. 🤢😭 Very educational though. Thank you.
Thank you Dr. Boster I’m going through this now my ocrevus isn’t working this time it’s been almost 2 months I’m getting optic neuritis, dizzy , nausea , pain , I’m going to do a steroid infusion next week . I hope the infusion helps. I’ve noticed my body hasn’t been responding as well as it use to with the ocrevus . I wonder why? I’ve had so much going with my body recently.
Try the carnivore diet.
Thank you sir.
Thank you so much for sharing this information 😊
I was diagnosed with MS in 1991. My Neurologist has tested me about 3 times for NMOSD, with results coming back borderline each time. What would you recommend for someone with these results?!? Thanks Arron ❤
I am what feels like a flare. Its a bad one. But because my mri doesn't show anything new. I was blown off. No one will listen
Im sorry this happening to you i hope u find a doctor that can help you
Great video. I am an MS neurologist and often inform patients of your channel to educate themselves😊 I recall in one of your videos you would have low threshold to treat even a isolated sensory relapse. I recently came across this in discussion with other colleagues in patient with actively enhancing cervical cord lesion and reportedly only sensory symptoms (I didn’t see her initially). She was not given steroids and discharged without completion of brain scan which eventually showed multiple lesions including brain stem. She was severely anxious. After I spoke to her she was getting worse and thus gave her steroids and started on DMT. So im wondering if you would give steroids in such a situation as there is the argument that steroids will not impact long term disability? Thank you!
Thanks Dr B
Idaho here. I have MS and I've had an attack on my Optic Nerve with partial blindess. Would I be a candidate for NMO testing?
Thank you.
Very informative.
My uncle was diagnosed with this after one month. He is currently still in ICU on a breathing tube. He just received his first treatment, and they are waiting to see if this works. My question is what are we to be looking for as results of the treatment working and how long will it take?
How do you diagnose NMOSD? Is it with an MRI looking for lesions the same as for MS? I’m confused?
By the way I’m from England.
i have 2 MRI’s in a few weeks (here in Columbus, coincidentally enough) to see if i have or don’t have a neurological condition. my symptoms line up with MS. is it normal for symptoms to come and go (numbness, tingling, dead weight feeling….all on one side). sometimes they last for weeks and sometimes it comes in waves throughout the day. i’ll feel symptom free for a few hours, it comes back, goes away, comes back, etc….
(those symptoms amongst others)
Is NMO the same as CIS or Transverse Myelitis? Can MNO be misdiagnosed as MS? Is PLEX similar to IVIG? When does IVIG come in? Sorry so many questions! 😅
So are both attacks only 1 day in duration? I was hospitalized for 2 weeks for mynattack bc it kept going for longer than 1 day
Living the sfbay area and cannot find ms doctor. Only neurologist which are useless.