Prior to my diagnosis, my general Neuro was unsure. One day in a very honest moment, he turned to me and said " this is MS and you deserve someone that knows what they are doing and has access to the resources you will need moving forward." I have a huge amount of respect for that guy. Young guy only a few years out of residency.
love docs who know what they don't know. that's who I would want taking care of my family! they make excellent colleagues for me to work alongside taking care of our patients with MS together too
I just had a run in with a VA Neurologist that’s extremely proud of the letters behind his name. But he insisted that I have “chronic progressive MS” and that there are NO medications available. I’m diagnosed as RRMS and nobody anywhere has told me that I had progressed. This man is clueless!
Yeah, I believe this. My neurologist went back and forth a couple of times before finally giving a diagnosis of MS. Quite honestly, for purposes of disability award, I am glad she made a decision. But, as far as my personal health and treatment goes, it raises more questions than answers.
I’ve read some articles that are stating that lesions May grow from the inside out. That’s why so many people have clean MRIs and then all of a sudden they have multiple. I’ve heard of it taking up to ten years until someone is diagnosed.
It is amazing to see that you are passionately researching this topic and bringing better quality care for people with chronic illnesses! ❤❤❤ I have tears as I am so grateful! So much suffering and then to be told that you were misdiagnosed...that is devastating! And that the correct care could been given many years before. Thank you so much for your work and compassion!!! ❤❤❤ I am not diagnosed with anything. I hope that I will not be, but some symptoms are quite good indigators that something is going on. Finding about the possibility of being misdiagnosed is very important part of self-advocacy.
I have seen multiple neurologists who were less than knowledgeable about MS. And arrogant on top of it as they did not think I had anything worth contributing to my own treatment. It has caused me a lot of problems. I have seen 2 MS Specialists and one of them actually was. Dr. Roger Cooke at the Spokane WA MS Center was a life changing relief to me after so many years of meeting the wrong doctors and then avoiding doctors as a result. Unfortunately I had to move out of state and I am again avoiding doctors after meeting the wrong ones. You are correct about patients not fitting into a cookie cutter presentation. I have lived a life that most people would not believe and I am misdiagnosed as a person also, lol.
I was diagnosed in 1997 at the age of 21. My lumber puncture showed oligliclonal bands and my mri showed lesions. Initial symptom was optic neutritis, right eye. It wouldn't move right. I have led a very active life up to now. No real symptoms to speak of. Rebif up until 2010. Which I stopped due to career change. I have had, however, borderline vit b12 levels for quite some time. All in th 200-225 pg/ml range. I have been taking oral b12 and it doesn't seem to make any difference. I have the utmost respect for my neurologists but I sometimes feel that maybe something has been missed. Keep up the good work.
Well, maybe you have both?! But definitely if your B12 does not rise and you are supplementing...that should be brought to your Dr. attention. Have you tried B12 supplements which you can spray to your mouth?
@@SatumainenOlento The surplus of Vitamin B12 is automatically eliminated physiologically by the body. Excess vitamin B12 is just as bad as vitamin B12 deficiency! Stop spreading fake science!
I would recommend that doctor's and researchers follow the possibility that MS like many other problems tie back to various autoimmune disorders and hopefully target causation and put a stop to these horrible diseases.🤔. Like my pain, hope doesn't wain.😁
i totally agree with you giving 2 examples as a pathos for your short talk, I referred a case of 46 y F CADASIL" with early vascular dementia classic vasculopathy by MRI" to a consultant of neurology then i found from her later that the diagnosis changed to MS, another case of 19 y M ADEM post-covid referred to another consultant of neurology to be changed to MS " no other later attacks"....on the contrary a 49 F with CIS from 7 years " one attack where she lost one eye" Misdiagnosed as Behçet, and the list goes on & on I am Not a neurologist but a hematologist with a high flow general practice office in Cairo Egypt
Hi Dr Kaisey. Thank you for your UA-cam videos. I love how you present which makes complicated data very accessible. What are your thoughts on continuing with the DMT when you’re over 55 and MRIs have been stable since first diagnosed and started taking DMT (15 years) and no new sx. I’ve heard people can stop them if they’re over 55 (some say 65) and have had stable MRIs for a few years. Would appreciate your input. Thank you.
thanks for you kind words Shan! there's a big study right now called DiscoMS to answer this exact question - discontinuing meds on people over 55 who are stable. Some smaller prior studies seem to indicate that if someone has been stable on their medication for a long time and they're above a certain age (this varies between studies), they usually don't notice changes after stopping the meds. As with most things, it's VERY person-dependent and the decision can only be made with your MS doc.
I'm 68. New onset the fall of 2022. In 12/22 I went to a neuroscience facility at Penn State Hershey in Pa. Dr.Thomas started me on copaxone. Symptoms got worse. I have not been able to walk without assistance. Its been 4 yrs Now on Kesimpta, ampura, bacolfen naltrexone. Haven't completed all in the 1st go. My concern is the age
I have most, if not, all the symptoms of MS. And some symptoms i have had years. Recently had an MRI done. Which showed multiple lesions in my brain. My spine MRI was clear of Leisons. Ive been told from my neurosurgeon that I likely have MS. I had an EMG done which showed Negative for any issuse from my neck. I have been told from a neurologist that they arent in the right location for MS lesions to be. They think it might be somethjng else causing my symptoms. But what else could it be? You stated in your video that not all brains are the same. I am being sent to an actual MS clinic for a second opinion from a MS neurologist. I am really hoping I dont end up losing my eye sight or making my symptoms worse by waiting too long for a diagnosis either :(
Hello! Thank you so very much for all of the work you are doing! I know this was a brief video, but I noticed you never mentioned results of an LP… I always believed that was a big part of confirming an MS diagnosis.
It is part of the diagnostic criteria IF the MRIs and symptom history alone aren't enough to confirm it. And a negative LP does make me think twice about whether someone actually has MS because most people with MS do have positive LP results. But no one test, including LP, is 100% accurate for MS. (I'm working on changing that!)
@@SourcingProsInc yes, for the things we're using to help with MS diagnosis, the blood and CSF need to be collected around the same time and compared to each other
@ Dr. Kaisey… the LP was needed to make the Dx of MS. And as I was organizing my records I noticed my MS Panel, Serum was canceled because it never made it to the lab. I did contact my old Dr who made the Dx and it is confirmed that it was not done. I left a message in your office to hopefully have a nurse call me. Thank you for Al your videos and keep them coming 👍🏻
I have 2 lesions on the brain, one of them was active when I was diagnosed last year. It caused numbness of my face. Before that, I have never had any neurological symptom in my life. My LP is negative. I started with Tecfidera.
This is actually very depressing. Think of all the people that actually do suffer from terrible ms symptoms half if not all their adult life and the majority actually have been treated wrong all along. Think about the continuing nightmare that altered their entire life negatively.
I have identical OCB in both serum and fluid. Also lesion in periventricular (5mm) and juxtacortical region. VEP also shows delay after Optic neuritis.
I have tingling, burning and pinch and needles sensations all over my body for 3 years. Spasms in small finger in the left hand, migraines, I had a tingling patch on my face where I lost feeling (it’s back to normal now). After head and neck MRI and nerve conduction study my neurologist told me I’m completely fine, no MS. I guess I have to wait for a serious onset to be diagnosed?
I'm not diagnosed because what's the point. Only trouble is they won't treat you. I was having numbness and tingling... I also felt like I had warm running under my skin. My vitiman D was low. I also started taking vitamin B 1 and magnesium. I've been feeling better....🤷 I did hear they might prescribe steroids but if your not diagnosed they won't prescribe anything I assume. I'm going to keep going regardless.
@@haninshuaib7289 I did two MRI's one said it was a stroke the other asked me if anyone said anything about me having MS. I said no, so he dropped it. I have refused anymore MRIs because like I said, what's the point. I'm definitely not interested in a spinal tap. Nope! I hear they have shots, the comments I hear, the side effects aren't good. I don't know. I've been feeling better taking vitamins. D and b1 and magnesium every once in awhile but that causes diarrhea. 😄
I think that MS is a huge group of diseases that show similar phenotypical symptoms and imaging changes in CNS. Until the molecular pathology discover the cause of MS, diagnosis and treatments will suffer greatly and all this will continue to happen. Remember if you hear even remotely that a disease has a criteria for diagnosis then know that its pathophysiology is UNKNOWN.
The 2%, are you saying that neurologists are over diagnosing or under diagnosing MS or both? It more so sounds like you’re saying people are over diagnosed.
How to know if OGC bands are from MS? The number of bands maybe? Or other mark in CSF besides the number and type? I'm asking because my MRI only shows 2 lessions(neither of them enhanced). I have bands (but not the specific number. The report just reads "positive"). Recently I was diagnosed with 3 heart conditions and was put on a pacemaker (after that a lot of my "MS symptons" went away like dizziness and lightheadness). My neuro says the lessions could be also from mini-strokes but that the bands were certain. So, I asked for another lumbar puncture (considering that it could be a lab error from the first time).. But.. are O bands better to diagnosed me?
the lab always has a number, they then extrapolate from that to interpret whether that's a positive or negative result. good luck getting answers! we're developing a central vein sign MRI, it can tell the diff between MS and "mini-strokes"
Thank you for your video, it was very informative. I've been diagnosed with MS however I dont think I have it. The symptoms i experience mirror symptoms of MS but my lumbar puncture was clear and another neurologist told me that the lesions on my brain were not MS related but rather age related. Can you help me pls?
I got diagnosed with lateral MS and I use a wheelchair a lot and everything. And I'm from originally from California, but I'm way moving. My Doctor told me. I'm a full risk and I'm moving back to California. John will cox 😂
I think you're letting neurologists who misdiagnose these patients off too easy. It's not difficult to use the McDonald criteria, and any neurologist unaware of these criteria doesn't deserve to be treating MS patients. This is a life-changing diagnosis, and we deserve better. Not only that, ignoring treatments such as HSCT for MS is just as irresponsible, as it's the only real legitimate treatment that stops progression of the disease in many MS patients. This is research that's available to every American at their fingertips (via the internet). I can use the McDonald criteria myself and know I have MS without any testing whatsoever.
@@onefabknitternz I know myself personally that I can be diagnosed without testing using the McDonald criteria because of my symptoms. I had diplopia, a common symptom of MS, as well as pins and needles and numbness in my leg. These are two different symptoms that occurred at different times. I guess actual MRI evidence is necessary for a formal diagnosis, but my point is that a neurologist shouldn't be making this mistake. The diseases you mention don't seem to embody my symptoms. Not sure how EDs fits into this discussion.
So let me get this straight, you are saying only 2% of those diagnosed by neurologists as having MS actually have MS? All other statistics I've seen say around 20% of those diagnosed with ms are misdiagnosed, that's 80% correctly diagnosed.
nope, i'm not saying it's 2% at all. the video goes in to details. i published one of those studies you're referring to and yes found an 18% misdiagnosis rate.
Hi Dr Kaisey! Your information filled UA-cam’s are immensely helpful, thank you! Wondering if you might be able to do a UA-cam specific to those diagnosed with MS at age 60? Interestingly I was diagnosed w/ pars planitis at 29.
aging and MS is a fascinating and understudied topic! very rare to be diagnosed at that age but not impossible, I have other patients in that boat too. i'll put it on my list of future videos, thanks for the suggestion
@@DrMarwaKaisey Thank you so much for your reply! Perhaps eating a Mediterranean, low salt diet, being physically active, spending time outside in warm sunny cities, and maintaing a healthy weight helped slow my MS progression? 1987, age 29, was perhaps my initial symptom (pars planitis), at age 59, in 2017 (the year I was officially menopausal), I started experiencing a range of more typical MS symptoms (doctors did not suspect MS likely due to my age) and 2021, at age 63, I was diagnosed with MS. Given my age was outside the norm + after reading about the misdiagnosis study that you and Dr Sicotte led, I met with and confirmed my diagnosis with multiple neurologists ... including Dr Sicotte. Today I received the link below that mentions there are 2.5 million people in the world w/ MS + 65 is the current average age of people w/ MS. I know there are many MSers, like me, who will appreciate, benefit and learn from any information you are able to share about aging with MS. Heartfelt thank yous!
@@kathys8701 it's such an important and under-studied topic! these days, most people with MS die from the same things the rest of us die from: heart disease and cancer. so focusing on decreasing risks of these through a heart-healthy lifestyle and routine cancer screenings are as important for people with MS as they age as for anyone else!
MS is Strong SOLUTION FLGHTING FOR TREATMENT CAUSE OF THE SYMPTOMS OF SO CALLED MULTIPLE SCLEROSIS!!! Apparantly nothing else matters critical Healthcare research facilitate collaboration defining the path forward establishing the understanding and treatment of CCSVI! #CCSVI
Multiple Sclerosis is Strong SOLUTION FLGHTING FOR TREATMENT CAUSE OF THE SYMPTOMS OF SO CALLED MULTIPLE SCLEROSIS!!! Apparantly nothing else matters critical Healthcare research facilitate collaboration defining the path forward establishing the understanding and treatment of Neurovascular disease CCSVI organizing unified clarity in Science knowledge and progress! #CCSVI So happens CCSVI is a MINIMALLY INVASIVE TREATABLE Congenital Science Confirmed Recognized Medical Condition studies show causative factor so called Multiple Sclerosis and role/part 43 other so called Neurological Afflictions Including Migraines, Asperger Autism, Dementia/Alzheimer's, Aphasia, Optic Neuritis, Tinnitus, Transverse Myelitis, Parkinson's Disease, Lyme Disease, Meniers Syndrome, Varricose Vein and Thyroid issues ect., Ect., ECT.! As much the unproven autoimmune theory so called MS is being referred to as a slow Stroke! Apparantly nothing else matters critical Healthcare research facilitate collaboration defining the path forward establishing the understanding and treatment of Neurovascular disease organizing unified clarity in Science knowledge and progress! #CCSVI Multiple Sclerosis is strong and you often need help. Make you be worthy of this help, don't stand in a corner complaining, do your part! 💪 #Symptoms often ease/DISAPPEAR Facilitate Collaboration Neurovascular Disease Research! #CCSVI FB Group: MultipleStenosisSociety t.co/YYPIA4tRuM So happens, to mention apparently, Neurogenesis and Homeostasis, are often side effects of Venous Angioplasty treating CCSVI!! Who Knew?? Save Healthcare $ Facilitate Research & Establish Venous Cerebrospinal Blood Flow Treatment/s, as Baseline Primary Care Optionl Treating Neurovascular Disease! Many feel/know #CCSVI is a recognized Medical condition Science confirmed causative factor MS SymptoMS role/part 43 Other So Called Neurological Afflictions studies show! Apparently 1 in 4 cut back on necessities to be able to afford medications! '“To be effective, our health care system needs restructuring to focus on prevention and addressing root causes of disease. Overcoming this challenge is the greatest hurdle facing public health today. It has little to do with science or with technology, but rather with regulation and public policy."' Supplying Oxygen & Nutrients to Every Cell in the Body, Blood & Circulation including activity and exercise ARE Building Blocks of life, having made yourself what you are functioning today! #CCSVI is a congenital Science confirmed recognized Medical condition established causative factor MS & role/part 43 other so called Neurological afflictions studies show! #CCSVI Venous Hypertension >microbleedings >iron >inflammation >free radicals >neurodegeneration #multiplesclerosis M.S. - Mystery Solved Mysterious Autoimmunity = CCSVI Neurodegeneration M.S. - Mystery Solved Mysterious Autoimmunity = CCSVI Neurodegeneration Keep in mind! Also venous hypertension ➡️ impaired CSF absorption ➡️ reduced G Lymphatic drainage ➡️ interstitial peptides accumulation ➡️ neuro inflammation #CCSVI Who Knew?? #BloodFlowMatters Supplying Oxygen and Nutrients to every Cell along with clearing toxic brain waste, what is the role of CCSVI Venous Hypertension and proper/improved Cerebrospinal flow, impacting neurological symptoms regulating mood and cognitive Senescene Psych issues? #CCSVI #BloodFlowMatters With age, blood flow to the brain decreases b/c blood vessels produce less nitric oxide, a gas that expands blood vessel walls. Such disruptions contribute to changes in cognitive function that occur with age. #Exercise increases nitric oxide & boosts blood flow to the brain. #Urgent #BloodFlowMatters Keep in mind! Arteries are nothing without a Heart, and a Heart is nothing without Veins! Treatment improving Arterial Circulation is permitted and common, all treatments that improves Circulation in Veins are not widely available. #CCSVI Horizontal sleeping causes Reflux of De-Oxygenized blood towards the stenosed Hypoxic brain, which after years results in MS Sleeping is a Silent threat to mankind! Keep in mind! Arteries are nothing without a Heart, and a Heart is nothing without Veins! Treatment improving Arterial Circulation is permitted and common, all treatments that improves Circulation in Veins are not widely available. #CCSVI Help facilitate Neurovascular Disease Research Best chance for longevity quality of life depends on availability Neurovascular Disease Research Collaboration. '“When we age, one of the common things that happens within our brain is that the blood vessels do become compromised in part because of chronic conditions,” it is said. “And when that occurs in normal aging, what happens within the brain is … silent strokes.”' As much CCSVI has been Scientifically established to have a role/part in 43 so Neurological afflictions including Dementia and so called MS 'There is evidence to suggest COVID-19 impacts the same blood vessels that feed the brain. If the virus is damaging those vessels, which could speed up aging, this, in turn, means some survivors might be at risk of getting early-onset dementia.' Time for Learning Science #BloodFlowMatters Apparantly nothing else matters critical Healthcare So happens CCSVI a TREATABLE Congenital Science Confirmed Recognized Med Condition STUDIES show causative factor so called Multiple Sclerosis & role/part 43 other SO called Neurological Afflictions Incl. Migraines, Asperger Autism Dementia/Alzheimer's Aphasia Optic Neurtis Tinnitus Transverse Myelitis Ect! facilitate collaboration defining the path forward establishing the understanding and treatment of Neurovascular disease organizing unified clarity in Science knowledge and progress! Critical Healthcare Research addressing Neurovascular/Cardiovascular Disease including Heart & Brain function Amygdala Dopamine/Serotonin related Mental Health Depression Vascular Disease issues! #anxiety #VascularDepressionConsensus FB Group: MultipleStenosisSociety t.co/7JNmFD7W4l Apparently What is the role of CCSVI Venous Hypertension and proper/improved Cerebrospinal Blood flow Impacting circulation and homeostasis balance? #CCSVI #BloodFlowMatters #spasticity #perfusion Horizontal sleeping causes Reflux of De-Oxygenized blood towards the stenosed Hypoxic brain CCSVI is Science Confirmed Recognized Medical Condition STUDIES show causative factor MS Varicose Veins Fatigue Atrophy Inflammatiion Thyroid issues Covid-19 Heart function matters Cramps Mental Health problems Bowel & Bladder affairs insomnia Senescene Psych unusual behavior! Studies have shown that mostly ineffective often harmful or poorly tolerated Pharmaceuticals that 'TREAT' so called Multiple Sclerosis (M$) $20-40Billion W/a B/yr industry! Living with the Symptoms of Multiple Sclerosis is torturous tortuous tumultuous utter misery! Chronic Cerebrospinal Venous Insufficiency CCSVI/Neurovascular Disease CCSVI is a Treatable Congenital Scientifically Confirmed Recognized Medical Condition, Established Causative Factor in Multiple Sclerosis SymptoMS, AND plays a part 43 other so called Neurological afflictions! CCSVI may be impacting yourself right now and you are unaware! #CCSVI Apparently the Sooner a Person Receives Venous Angioplasty for Treatment of CCSVI! best possibility eliminating cause of MS Symptoms and easing or disappearing! So Called Multiple Sclerosis is more important to some than others Pharmacists, The M$ Society, Neurologists 'so called MS experts', Cane Manufacturing, Scooter and Power Chairs companies, etc Etc ETC So Called Multiple Sclerosis (MS) is/HAS been a MYSTERIOUS elusive UNPROVEN Autoimmune THEORY solely based on SYMPTOMS! STUDIES show Pharmaceuticals That 'TREAT' so called MS only 20-40% Effective DO NOT slow Progression of the Disease Often have Harsh Corrosive Side Effects sometimes DEATH! #CCSVI So Called Multiple Sclerosis (MS) is/HAS been a RUBBISH UNPROVEN Autoimmune THEORY Based Solely on SYMPTOMS! #CCSVI Venous Hypertensiono >microbleedings >iron >free radicals >neurodegeneration #multiplesclerosis M.S. - Mystery Solved Mysterious Autoimmunity = CCSVI Hypertension M.S. - Mystery Solved Mysterious Autoimmunity = CCSVI Neurodegeneration Keep in mind! Also venous hypertension ➡️ impaired CSF absorption ➡️ reduced G Lymphatic drainage ➡️ interstitial peptides accumulation ➡️ neuro inflammation #CCSVI So happens, to mention apparently, Neurogenesis and Homeostasis, are often side effects of Venous Angioplasty treating CCSVI!! Apparently sooner treatment best possiblity Symptoms easing or disappearing. 1/1 #CriticalHealthcare_Research #CCSVI Neurogenesis is the process by which new neurons are formed in the brain. Neurogenesis is crucial when an embryo is developing, but also continues in certain brain regions after birth and throughout our lifespan. qbi.uq.edu.au › brain-basic Homeostasis is an internal feedback system that stabilizes and balances our body's chemistry, so that our organs work smoothly and efficiently with each other. Sickness is the disruption of homeostasis, which doctors treat with medicine.Oct 20, 2016 www.bmj.com› bmj.i5643 Blowing the Whistle on Corrupt Pharmaceutical Industry by Gwen Osen FB Group: MultipleStenosisSociety facebook.com/share/p/TbJW3Q5QhycMSgkv/?mibextid=oFDknk Critical Healthcare Research addressing Neurovascular/Cardiovascular Disease including Heart & Brain function Amygdala Dopamine/Serotonin related Mental Health Depression Vascular Disease issues! #anxiety #VascularDepressionConsensus bmcmedicine.biomedcentral.com/articles/10.1186/s12916-016-0720-5
@@DrMarwaKaisey thanks. I’ve asked my neurologist to run a scan on me to confirm. I’ve gotten some of the MS symptoms including serious digestive issues. I’m hoping I get a clear pass. Even with b12 at good levels I still get the vibration in my legs and don’t feel a fly or an ant in my arms or legs.
@@DrMarwaKaisey I was just diagnosed with MS with 1 lesion. I do have a positive LP with oligoclonal bands. How could I get this diagnosis with 1 lesion my doctor said that using multiple lesions as criteria is outdated.
Prior to my diagnosis, my general Neuro was unsure. One day in a very honest moment, he turned to me and said " this is MS and you deserve someone that knows what they are doing and has access to the resources you will need moving forward." I have a huge amount of respect for that guy. Young guy only a few years out of residency.
love docs who know what they don't know. that's who I would want taking care of my family! they make excellent colleagues for me to work alongside taking care of our patients with MS together too
I just had a run in with a VA Neurologist that’s extremely proud of the letters behind his name. But he insisted that I have “chronic progressive MS” and that there are NO medications available. I’m diagnosed as RRMS and nobody anywhere has told me that I had progressed. This man is clueless!
Yeah, I believe this. My neurologist went back and forth a couple of times before finally giving a diagnosis of MS. Quite honestly, for purposes of disability award, I am glad she made a decision. But, as far as my personal health and treatment goes, it raises more questions than answers.
I’ve read some articles that are stating that lesions May grow from the inside out. That’s why so many people have clean MRIs and then all of a sudden they have multiple. I’ve heard of it taking up to ten years until someone is diagnosed.
It is amazing to see that you are passionately researching this topic and bringing better quality care for people with chronic illnesses! ❤❤❤ I have tears as I am so grateful!
So much suffering and then to be told that you were misdiagnosed...that is devastating! And that the correct care could been given many years before.
Thank you so much for your work and compassion!!! ❤❤❤
I am not diagnosed with anything. I hope that I will not be, but some symptoms are quite good indigators that something is going on. Finding about the possibility of being misdiagnosed is very important part of self-advocacy.
I have seen multiple neurologists who were less than knowledgeable about MS. And arrogant on top of it as they did not think I had anything worth contributing to my own treatment. It has caused me a lot of problems. I have seen 2 MS Specialists and one of them actually was. Dr. Roger Cooke at the Spokane WA MS Center was a life changing relief to me after so many years of meeting the wrong doctors and then avoiding doctors as a result. Unfortunately I had to move out of state and I am again avoiding doctors after meeting the wrong ones.
You are correct about patients not fitting into a cookie cutter presentation. I have lived a life that most people would not believe and I am misdiagnosed as a person also, lol.
I was diagnosed in 1997 at the age of 21. My lumber puncture showed oligliclonal bands and my mri showed lesions. Initial symptom was optic neutritis, right eye. It wouldn't move right. I have led a very active life up to now. No real symptoms to speak of.
Rebif up until 2010. Which I stopped due to career change.
I have had, however, borderline vit b12 levels for quite some time. All in th 200-225 pg/ml range. I have been taking oral b12 and it doesn't seem to make any difference.
I have the utmost respect for my neurologists but I sometimes feel that maybe something has been missed. Keep up the good work.
Well, maybe you have both?! But definitely if your B12 does not rise and you are supplementing...that should be brought to your Dr. attention.
Have you tried B12 supplements which you can spray to your mouth?
@@SatumainenOlento The surplus of Vitamin B12 is automatically eliminated physiologically by the body. Excess vitamin B12 is just as bad as vitamin B12 deficiency! Stop spreading fake science!
I would recommend that doctor's and researchers follow the possibility that MS like many other problems tie back to various autoimmune disorders and hopefully target causation and put a stop to these horrible diseases.🤔. Like my pain, hope doesn't wain.😁
i totally agree with you giving 2 examples as a pathos for your short talk, I referred a case of 46 y F CADASIL" with early vascular dementia classic vasculopathy by MRI" to a consultant of neurology then i found from her later that the diagnosis changed to MS, another case of 19 y M ADEM post-covid referred to another consultant of neurology to be changed to MS " no other later attacks"....on the contrary a 49 F with CIS from 7 years " one attack where she lost one eye" Misdiagnosed as Behçet, and the list goes on & on
I am Not a neurologist but a hematologist with a high flow general practice office in Cairo Egypt
wowwww all stories from a hematology office? wild!
Hi Dr Kaisey. Thank you for your UA-cam videos. I love how you present which makes complicated data very accessible. What are your thoughts on continuing with the DMT when you’re over 55 and MRIs have been stable since first diagnosed and started taking DMT (15 years) and no new sx. I’ve heard people can stop them if they’re over 55 (some say 65) and have had stable MRIs for a few years. Would appreciate your input. Thank you.
thanks for you kind words Shan! there's a big study right now called DiscoMS to answer this exact question - discontinuing meds on people over 55 who are stable. Some smaller prior studies seem to indicate that if someone has been stable on their medication for a long time and they're above a certain age (this varies between studies), they usually don't notice changes after stopping the meds. As with most things, it's VERY person-dependent and the decision can only be made with your MS doc.
@@DrMarwaKaisey thanks very much :)
I'm 68. New onset the fall of 2022. In 12/22 I went to a neuroscience facility at Penn State Hershey in Pa. Dr.Thomas started me on copaxone. Symptoms got worse. I have not been able to walk without assistance. Its been 4 yrs
Now on Kesimpta, ampura, bacolfen naltrexone. Haven't completed all in the 1st go. My concern is the age
I have most, if not, all the symptoms of MS. And some symptoms i have had years. Recently had an MRI done. Which showed multiple lesions in my brain. My spine MRI was clear of Leisons. Ive been told from my neurosurgeon that I likely have MS. I had an EMG done which showed Negative for any issuse from my neck.
I have been told from a neurologist that they arent in the right location for MS lesions to be. They think it might be somethjng else causing my symptoms. But what else could it be? You stated in your video that not all brains are the same.
I am being sent to an actual MS clinic for a second opinion from a MS neurologist.
I am really hoping I dont end up losing my eye sight or making my symptoms worse by waiting too long for a diagnosis either :(
Many videos say ms lesions can technically be anywhere .
Hello! Thank you so very much for all of the work you are doing! I know this was a brief video, but I noticed you never mentioned results of an LP… I always believed that was a big part of confirming an MS diagnosis.
It is part of the diagnostic criteria IF the MRIs and symptom history alone aren't enough to confirm it. And a negative LP does make me think twice about whether someone actually has MS because most people with MS do have positive LP results. But no one test, including LP, is 100% accurate for MS. (I'm working on changing that!)
Thank you so much for your response Dr. Kaisey!
@@DrMarwaKaisey the CSF needs to be compared to serum correct to be final?
@@SourcingProsInc yes, for the things we're using to help with MS diagnosis, the blood and CSF need to be collected around the same time and compared to each other
@ Dr. Kaisey… the LP was needed to make the Dx of MS. And as I was organizing my records I noticed my MS Panel, Serum was canceled because it never made it to the lab. I did contact my old Dr who made the Dx and it is confirmed that it was not done. I left a message in your office to hopefully have a nurse call me. Thank you for Al your videos and keep them coming 👍🏻
I have 2 lesions on the brain, one of them was active when I was diagnosed last year. It caused numbness of my face. Before that, I have never had any neurological symptom in my life. My LP is negative. I started with Tecfidera.
good luck!
This is actually very depressing. Think of all the people that actually do suffer from terrible ms symptoms half if not all their adult life and the majority actually have been treated wrong all along. Think about the continuing nightmare that altered their entire life negatively.
this is why i do the research i do, it was spurred by meeting several of these people.
@@DrMarwaKaisey ❤❤❤ So important work! Thank you so much!!! ❤❤❤
I have identical OCB in both serum and fluid. Also lesion in periventricular (5mm) and juxtacortical region. VEP also shows delay after Optic neuritis.
In fact I think of new four letter and five letter words to describe a mess? MS
I have tingling, burning and pinch and needles sensations all over my body for 3 years. Spasms in small finger in the left hand, migraines, I had a tingling patch on my face where I lost feeling (it’s back to normal now). After head and neck MRI and nerve conduction study my neurologist told me I’m completely fine, no MS. I guess I have to wait for a serious onset to be diagnosed?
I'm not diagnosed because what's the point.
Only trouble is they won't treat you.
I was having numbness and tingling... I also felt like I had warm running under my skin.
My vitiman D was low.
I also started taking vitamin B 1 and magnesium. I've been feeling better....🤷 I did hear they might prescribe steroids but if your not diagnosed they won't prescribe anything I assume. I'm going to keep going regardless.
Did you do spine mri ?
@@haninshuaib7289 I did two MRI's one said it was a stroke the other asked me if anyone said anything about me having MS. I said no, so he dropped it.
I have refused anymore MRIs because like I said, what's the point. I'm definitely not interested in a spinal tap. Nope!
I hear they have shots, the comments I hear, the side effects aren't good. I don't know. I've been feeling better taking vitamins. D and b1 and magnesium every once in awhile but that causes diarrhea. 😄
@@human-qp1mf the mri you did were both for the brain or for the brain and spine ?
@@haninshuaib7289 just my brain.
I think that MS is a huge group of diseases that show similar phenotypical symptoms and imaging changes in CNS. Until the molecular pathology discover the cause of MS, diagnosis and treatments will suffer greatly and all this will continue to happen. Remember if you hear even remotely that a disease has a criteria for diagnosis then know that its pathophysiology is UNKNOWN.
The 2%, are you saying that neurologists are over diagnosing or under diagnosing MS or both? It more so sounds like you’re saying people are over diagnosed.
both. overdiagnosis is easier to study rigorously than delayed diagnosis, so there's a little more data on that
How to know if OGC bands are from MS? The number of bands maybe? Or other mark in CSF besides the number and type?
I'm asking because my MRI only shows 2 lessions(neither of them enhanced). I have bands (but not the specific number. The report just reads "positive").
Recently I was diagnosed with 3 heart conditions and was put on a pacemaker (after that a lot of my "MS symptons" went away like dizziness and lightheadness).
My neuro says the lessions could be also from mini-strokes but that the bands were certain. So, I asked for another lumbar puncture (considering that it could be a lab error from the first time)..
But.. are O bands better to diagnosed me?
the lab always has a number, they then extrapolate from that to interpret whether that's a positive or negative result. good luck getting answers! we're developing a central vein sign MRI, it can tell the diff between MS and "mini-strokes"
Thank you for your video, it was very informative. I've been diagnosed with MS however I dont think I have it. The symptoms i experience mirror symptoms of MS but my lumbar puncture was clear and another neurologist told me that the lesions on my brain were not MS related but rather age related. Can you help me pls?
Great Video! Thank you very much. What do you think Mavenclad or kesimpta First line high active ms , 6 Month After diagnosis. Thanks from germany!
I was misdiagnosed for over 30 years. Despite the fact that my mother has MS!
oh no!
What did you have or what was the issue?
They don't even describe Miley and Leslie and anymore is called atrophy and it is in my cerebellum as well as eating my corpus callosum
I got diagnosed with lateral MS and I use a wheelchair a lot and everything. And I'm from originally from California, but I'm way moving. My Doctor told me. I'm a full risk and I'm moving back to California. John will cox 😂
How’s can we get the CAVS MRI testing?
locations, contact info, and eligibility criteria are here: clinicaltrials.gov/ct2/show/NCT04495556
Don't they typically send someone to get an mri that usually diagnose s it because it will show lesions
Other stuff can cause lesions
I think you're letting neurologists who misdiagnose these patients off too easy. It's not difficult to use the McDonald criteria, and any neurologist unaware of these criteria doesn't deserve to be treating MS patients. This is a life-changing diagnosis, and we deserve better. Not only that, ignoring treatments such as HSCT for MS is just as irresponsible, as it's the only real legitimate treatment that stops progression of the disease in many MS patients. This is research that's available to every American at their fingertips (via the internet). I can use the McDonald criteria myself and know I have MS without any testing whatsoever.
Can I ask how tou would know with no testing? So many other conditions overlap , NMO , mog , MG , EDs as a start
@@onefabknitternz I know myself personally that I can be diagnosed without testing using the McDonald criteria because of my symptoms. I had diplopia, a common symptom of MS, as well as pins and needles and numbness in my leg. These are two different symptoms that occurred at different times. I guess actual MRI evidence is necessary for a formal diagnosis, but my point is that a neurologist shouldn't be making this mistake. The diseases you mention don't seem to embody my symptoms. Not sure how EDs fits into this discussion.
So let me get this straight, you are saying only 2% of those diagnosed by neurologists as having MS actually have MS? All other statistics I've seen say around 20% of those diagnosed with ms are misdiagnosed, that's 80% correctly diagnosed.
nope, i'm not saying it's 2% at all. the video goes in to details. i published one of those studies you're referring to and yes found an 18% misdiagnosis rate.
Hi Dr Kaisey! Your information filled UA-cam’s are immensely helpful, thank you! Wondering if you might be able to do a UA-cam specific to those diagnosed with MS at age 60? Interestingly I was diagnosed w/ pars planitis at 29.
aging and MS is a fascinating and understudied topic! very rare to be diagnosed at that age but not impossible, I have other patients in that boat too. i'll put it on my list of future videos, thanks for the suggestion
@@DrMarwaKaisey Thank you so much for your reply! Perhaps eating a Mediterranean, low salt diet, being physically active, spending time outside in warm sunny cities, and maintaing a healthy weight helped slow my MS progression? 1987, age 29, was perhaps my initial symptom (pars planitis), at age 59, in 2017 (the year I was officially menopausal), I started experiencing a range of more typical MS symptoms (doctors did not suspect MS likely due to my age) and 2021, at age 63, I was diagnosed with MS. Given my age was outside the norm + after reading about the misdiagnosis study that you and Dr Sicotte led, I met with and confirmed my diagnosis with multiple neurologists ... including Dr Sicotte. Today I received the link below that mentions there are 2.5 million people in the world w/ MS + 65 is the current average age of people w/ MS. I know there are many MSers, like me, who will appreciate, benefit and learn from any information you are able to share about aging with MS. Heartfelt thank yous!
@@kathys8701 it's such an important and under-studied topic! these days, most people with MS die from the same things the rest of us die from: heart disease and cancer. so focusing on decreasing risks of these through a heart-healthy lifestyle and routine cancer screenings are as important for people with MS as they age as for anyone else!
MS is Strong
SOLUTION FLGHTING FOR TREATMENT CAUSE OF THE SYMPTOMS OF SO CALLED MULTIPLE SCLEROSIS!!!
Apparantly nothing else matters critical Healthcare research facilitate collaboration defining the path forward establishing the understanding and treatment of CCSVI! #CCSVI
Multiple Sclerosis is Strong
SOLUTION FLGHTING FOR TREATMENT CAUSE OF THE SYMPTOMS OF SO CALLED MULTIPLE SCLEROSIS!!!
Apparantly nothing else matters critical Healthcare research facilitate collaboration defining the path forward establishing the understanding and treatment of Neurovascular disease CCSVI organizing unified clarity in Science knowledge and progress! #CCSVI
So happens CCSVI is a MINIMALLY INVASIVE TREATABLE Congenital Science Confirmed Recognized Medical Condition studies show causative factor so called Multiple Sclerosis and role/part 43 other so called Neurological Afflictions Including Migraines, Asperger Autism, Dementia/Alzheimer's, Aphasia, Optic Neuritis, Tinnitus, Transverse Myelitis, Parkinson's Disease, Lyme Disease, Meniers Syndrome, Varricose Vein and Thyroid issues ect., Ect., ECT.!
As much the unproven autoimmune theory so called MS is being referred to as a slow Stroke!
Apparantly nothing else matters critical Healthcare research facilitate collaboration defining the path forward establishing the understanding and treatment of Neurovascular disease organizing unified clarity in Science knowledge and progress! #CCSVI
Multiple Sclerosis is strong and you often need help.
Make you be worthy of this help, don't stand in a corner complaining, do your part! 💪
#Symptoms often ease/DISAPPEAR
Facilitate Collaboration Neurovascular Disease Research! #CCSVI
FB Group: MultipleStenosisSociety
t.co/YYPIA4tRuM
So happens, to mention apparently, Neurogenesis and Homeostasis, are often side effects of Venous Angioplasty treating CCSVI!!
Who Knew??
Save Healthcare $ Facilitate Research & Establish Venous Cerebrospinal Blood Flow Treatment/s, as Baseline Primary Care Optionl Treating Neurovascular Disease! Many feel/know #CCSVI is a recognized Medical condition Science confirmed causative factor MS SymptoMS role/part 43 Other So Called Neurological Afflictions studies show!
Apparently 1 in 4 cut back on necessities to be able to afford medications!
'“To be effective, our health care system needs restructuring to focus on prevention and addressing root causes of disease. Overcoming this challenge is the greatest hurdle facing public health today. It has little to do with science or with technology, but rather with regulation and public policy."'
Supplying Oxygen & Nutrients to Every Cell in the Body, Blood & Circulation including activity and exercise ARE Building Blocks of life, having made yourself what you are functioning today! #CCSVI is a congenital Science confirmed recognized Medical condition established causative factor MS & role/part 43 other so called Neurological afflictions studies show!
#CCSVI
Venous Hypertension
>microbleedings
>iron
>inflammation
>free radicals
>neurodegeneration
#multiplesclerosis
M.S. - Mystery Solved
Mysterious Autoimmunity
= CCSVI Neurodegeneration
M.S. - Mystery Solved
Mysterious Autoimmunity
= CCSVI Neurodegeneration
Keep in mind!
Also venous hypertension ➡️ impaired CSF absorption ➡️ reduced G Lymphatic drainage ➡️ interstitial peptides accumulation ➡️ neuro inflammation #CCSVI
Who Knew??
#BloodFlowMatters
Supplying Oxygen and Nutrients to every Cell along with clearing toxic brain waste, what is the role of CCSVI Venous Hypertension and proper/improved Cerebrospinal flow, impacting neurological symptoms regulating mood and cognitive Senescene Psych issues? #CCSVI #BloodFlowMatters
With age, blood flow to the brain decreases b/c blood vessels produce less nitric oxide, a gas that expands blood vessel walls. Such disruptions contribute to changes in cognitive function that occur with age. #Exercise increases nitric oxide & boosts blood flow to the brain.
#Urgent #BloodFlowMatters
Keep in mind! Arteries are nothing without a Heart, and a Heart is nothing without Veins! Treatment improving Arterial Circulation is permitted and common, all treatments that improves Circulation in Veins are not widely available. #CCSVI
Horizontal sleeping causes Reflux of De-Oxygenized blood towards the stenosed Hypoxic brain, which after years results in MS
Sleeping is a Silent threat to mankind!
Keep in mind! Arteries are nothing without a Heart, and a Heart is nothing without Veins! Treatment improving Arterial Circulation is permitted and common, all treatments that improves Circulation in Veins are not widely available. #CCSVI
Help facilitate Neurovascular Disease Research
Best chance for longevity quality of life depends on availability Neurovascular Disease Research Collaboration.
'“When we age, one of the common things that happens within our brain is that the blood vessels do become compromised in part because of chronic conditions,” it is said. “And when that occurs in normal aging, what happens within the brain is … silent strokes.”'
As much CCSVI has been Scientifically established to have a role/part in 43 so Neurological afflictions including Dementia and so called MS
'There is evidence to suggest COVID-19 impacts the same blood vessels that feed the brain. If the virus is damaging those vessels, which could speed up aging, this, in turn, means some survivors might be at risk of getting early-onset dementia.'
Time for Learning Science #BloodFlowMatters
Apparantly nothing else matters critical Healthcare So happens CCSVI a TREATABLE Congenital Science Confirmed Recognized Med Condition STUDIES show causative factor so called Multiple Sclerosis & role/part 43 other SO called Neurological Afflictions Incl. Migraines, Asperger Autism Dementia/Alzheimer's Aphasia Optic Neurtis Tinnitus Transverse Myelitis Ect! facilitate collaboration defining the path forward establishing the understanding and treatment of Neurovascular disease organizing unified clarity in Science knowledge and progress!
Critical Healthcare Research addressing Neurovascular/Cardiovascular Disease including Heart & Brain function Amygdala Dopamine/Serotonin related Mental Health Depression Vascular Disease issues! #anxiety
#VascularDepressionConsensus
FB Group: MultipleStenosisSociety
t.co/7JNmFD7W4l
Apparently What is the role of CCSVI Venous Hypertension and proper/improved Cerebrospinal Blood flow Impacting circulation and homeostasis balance? #CCSVI #BloodFlowMatters #spasticity #perfusion
Horizontal sleeping causes Reflux of De-Oxygenized blood towards the stenosed Hypoxic brain
CCSVI is Science Confirmed Recognized Medical Condition STUDIES show causative factor MS Varicose Veins Fatigue Atrophy Inflammatiion Thyroid issues Covid-19 Heart function matters Cramps Mental Health problems Bowel & Bladder affairs insomnia Senescene Psych unusual behavior!
Studies have shown that mostly ineffective often harmful or poorly tolerated Pharmaceuticals that 'TREAT' so called Multiple Sclerosis (M$) $20-40Billion W/a B/yr industry!
Living with the Symptoms of Multiple Sclerosis is torturous tortuous tumultuous utter misery!
Chronic Cerebrospinal Venous Insufficiency CCSVI/Neurovascular Disease
CCSVI is a Treatable Congenital Scientifically Confirmed Recognized Medical Condition, Established Causative Factor in Multiple Sclerosis SymptoMS, AND plays a part 43 other so called Neurological afflictions!
CCSVI may be impacting yourself right now and you are unaware! #CCSVI
Apparently the Sooner a Person Receives Venous Angioplasty for Treatment of CCSVI! best possibility eliminating cause of MS Symptoms and easing or disappearing!
So Called Multiple Sclerosis is more important to some than others Pharmacists, The M$ Society, Neurologists 'so called MS experts', Cane Manufacturing, Scooter and Power Chairs companies, etc Etc ETC
So Called Multiple Sclerosis (MS) is/HAS been a MYSTERIOUS elusive UNPROVEN Autoimmune THEORY solely based on SYMPTOMS!
STUDIES show Pharmaceuticals That 'TREAT' so called MS only 20-40% Effective DO NOT slow Progression of the Disease Often have Harsh Corrosive Side Effects sometimes DEATH! #CCSVI
So Called Multiple Sclerosis (MS) is/HAS been a RUBBISH UNPROVEN Autoimmune THEORY Based Solely on SYMPTOMS!
#CCSVI
Venous Hypertensiono
>microbleedings
>iron
>free radicals
>neurodegeneration
#multiplesclerosis
M.S. - Mystery Solved
Mysterious Autoimmunity
= CCSVI Hypertension
M.S. - Mystery Solved
Mysterious Autoimmunity
= CCSVI Neurodegeneration
Keep in mind!
Also venous hypertension ➡️ impaired CSF absorption ➡️ reduced G Lymphatic drainage ➡️ interstitial peptides accumulation ➡️ neuro inflammation #CCSVI
So happens, to mention apparently, Neurogenesis and Homeostasis, are often side effects of Venous Angioplasty treating CCSVI!!
Apparently sooner treatment best possiblity Symptoms easing or disappearing.
1/1 #CriticalHealthcare_Research #CCSVI
Neurogenesis is the process by which new neurons are formed in the brain. Neurogenesis is crucial when an embryo is developing, but also continues in certain brain regions after birth and throughout our lifespan.
qbi.uq.edu.au › brain-basic
Homeostasis is an internal feedback system that stabilizes and balances our body's chemistry, so that our organs work smoothly and efficiently with each other. Sickness is the disruption of homeostasis, which doctors treat with medicine.Oct 20, 2016
www.bmj.com› bmj.i5643
Blowing the Whistle on Corrupt Pharmaceutical Industry by Gwen Osen
FB Group: MultipleStenosisSociety
facebook.com/share/p/TbJW3Q5QhycMSgkv/?mibextid=oFDknk
Critical Healthcare Research addressing Neurovascular/Cardiovascular Disease including Heart & Brain function Amygdala Dopamine/Serotonin related Mental Health Depression Vascular Disease issues! #anxiety
#VascularDepressionConsensus
bmcmedicine.biomedcentral.com/articles/10.1186/s12916-016-0720-5
Is it possible to get MS despite no lesions?
no. 'sclerosis' means scars or lesions. so you need multiple lesions to have MS :)
@@DrMarwaKaisey thanks. I’ve asked my neurologist to run a scan on me to confirm. I’ve gotten some of the MS symptoms including serious digestive issues. I’m hoping I get a clear pass. Even with b12 at good levels I still get the vibration in my legs and don’t feel a fly or an ant in my arms or legs.
@@mytravls good luck!
@@DrMarwaKaisey I was just diagnosed with MS with 1 lesion. I do have a positive LP with oligoclonal bands. How could I get this diagnosis with 1 lesion my doctor said that using multiple lesions as criteria is outdated.
98% can't be an accurate number!
and yet sadly it is!
I need help. Very little money. Reach out to me and help me. Thank you.