In my 63 years, it’s become very clear to me that most doctors have little interest in prevention and prefer to wait until a disease has progressed to the point of being able to satisfy the insurance company where additional tests & treatments are concerned. I’m sure there’s exceptions, but not usually.
🎯 yes! I was told a nephrologist would laugh us out of the office if we showed up asking for help with a sudden, significant & persistent reduction in kidney function because it wasn't bad (enough) yet (in an otherwise healthy appearing young person). Yet when consulting "Dr Google" it said treat kidney disease early to prevent further damage!! What is wrong with doctors today that they aren't interested in the mystery of how to keep one healthy? They aren't interested in finding any causes early on to *prevent* progression of disease? 🤦♀️
@sanddollar252 omg you are so right I have this and a three inch cyst on my brain but they won't do nothing till I get worse they put me on med so I don't get seizures until it does worse they drain the cyst....smh
@@Ms.Candie_ now that's just absurd! What damage could be occurring in the brain while your cyst is deciding what to do next. I'd get a 2nd and 3rd opinion. Sending you lots of luck & hugs!
i have a growing arcnid cyst in the angle between the pons and cerebellum and all they did was an mri every couple of years. well now they are doing it yearly because it's still growing. at first, they said not to be concerned because it wasn't large enough to need any treatment. well, that was almost 6 years ago. it just keeps growing. now they say oh well it's not grown enough. first, the doctors' take was, that if it grows then we'll consider a treatment. Now, it's oh well, it's growing but not large enough to consider treatment. Never mind the symptoms with my vision continually declining and the pain from chronic (5-6 days per week) migraines and pressure just getting increasingly painful each year. they literally were only focus on the IF it starts to grow, and now WHEN it becomes larger ENOUGH. All I want is for them to admit that this mass in my brain needs to be addressed since it is of concern to my vision. I mean living with the pain is awful, but I'd like them to find a course of action that would treat my vision from continuing to decline, even more. At least let me claim partial blindness during parts of my days. i have a feeling that next they well say well you havnt loss ENOUGH vision YET, for it be of a concern for us to consider any type of treatment.
Thank you for this. Got a type 1 CSVD diagnosis from an MRI one year ago, along with high blood sugar, high cholesterol, and obesity. Immediately stopped all added sugars, went whole food, plant based w addition of salmon and eggs. Began a walking program. I Fast 12 hrs overnight. Have gone from a 2x to a L. All blood work in normal range. My memory and multitasking have improved, my arthritis also, and I am happier and more motivated and serene than I have been in decades! Your explanation of this scary issue is so perfect! I watched my mom increase her drinking and take to her chair as she began her decline, and the proactive lifestyle I chose has lessened my fears and shown amazing results! It was so so worth it!
Im so glad I stumbled on this video while looking for answers that my doctors haven't given me. I had my first stroke at 43 and 6 years later a had 6 more strokes in 3 days. I was only diagnosed with white matter disease about 3 months ago and my neurologist doesn't know much about it so I'm trying to find a different one now. It's frustrating that I could have been making better health decisions for the last 10 years if any of my doctors had been able to tell me what was causing my strokes but they were all clueless. In the last 2 years I've been having trouble walking, constantly falling, can't think clearly and have had very little energy and motivation. This disease is devastating and I just feel like my life is over at 53. My heart goes out to everyone dealing with any of these issues. All I can say is take charge of your own health and don't accept "I don't know". If your doctors aren't giving you answers, find a better doctor before it's too late. Much love to ALL!
OR ask you doctor to research it and find out, so they can be of benefit to all the other patients affected over their career. I'd be forwarding this video to your doctor. I actually did that with another issue I had, and spoke to my doctor about it, forwarding the details. He did read it and said he wasn't aware but phoned the chemist while I was with him. They will listen if they're a good doctor. I have to add here, that I'm Australian and am aware our health system and Doctors are not pharmaceutically driven as they seem to be in the US, which I'm guessing you're in.
My Father is also found to be diagnosed with this as he has severe headache all the time & have similar symptoms like low energy, motivation. Can u share ur more experience for us to prevent it further & take precautionary measures prior..
Your exactly right! I'm in the same boat right now. But I do hv 4 autoimmune diseases, 1.Graves disease free 2. Sĵodrens disease 3. Small Fiber POLYNEUROPATHY/ legs feet kill me! 4. Purigo Nodularis recently from a dermatologist, / Skin lesions face & scalp. Recently another MRI showed more white enhancements periventrical area and subcortical area & now brain volume loss 😮🙃 😢. I hv a new neurologist appt January 21st 2024, soon now, been waiting 3 months to get in.m, possibly now MS? Especially since i hv autoimmune disease. Age 61, fairly good health? Besides autoimmune diseases and going down hill now, just feel bad all the time, sometimes 0 energy, I have flares that will land me in bed weeks or 2 to 3 months sometimes. I then hv to restrengthen my self, walk at park ect. I eat healthy, I hv trouble eating though, usually 1 good meal a day, small amounts, my digestive system doesn't work well most if time. Gastroporesis/ paralyzed stomach issues. I eat good protein, organic meat & veggies and organic fruits at night. I don't smoke nor drink. Weight about 120, 5'3. I struggle 🤷♀️ 7 specialist Dr's. 🙃 no help. I only take Metholmazole for my graves disease/ hyperthyroidism, daily 1 pill. I take krill oil, fish oils, ect. Keep my vit D levels up & checked. I try to stay healthy and try to just feel better in general. But it's a daily battle. 😢 i get no help or feed back much from the so called Dr's. 😡 Guess we'll see January 21st what this new Doc neurologist has to day about my new MRI results?? 😢🙃 😡 says a prayer 🙏🏻 for me. It may be MS? No one has said or my reports, about white matter disease, yet?? But it is periventrical area and subcortical areas, like MS, MS also can cause brain volume loss too? 😮 so, is it really MS? Or white matter disease?? Who knows right now 😢🙃??????? Only time will tell all I guess.
I'm 43yrs old and just got diagnosed. Can't think or get words out alot of the times and constant idk what to do feeling. No emotions or being able to take responsibility for my own self. It's frustrating when you've always been a single working providing momma and now a nothing. It needs more awareness for sure. Thank you thank you for this information ❤
I’m 54 years old and going thru the same thing. MRI with and w/o contrast indicated small foci of increased T2 weighted blah blah blah deep in the subcortical white matter.🥴
Your not a nothing. Your everything to your child. I have been there. I am now 58 and got this white matter crap to! It's not b the worse thing that can happen as my brother had a fatal brain tumor. Your.doing the work of 2 parents. Pat yourself on the back !!
Ashley, You are NOT a “nothing”! God made you a miraculous woman who loves her wonderful children, extended family and friends. Read my comment. Our bodies may fail us, but this doesn’t change our importance in this life. Take rest that God has us in His loving hands.❤ Krista
My wife was diagnosed in 2017 with Alzheimer’s 52 years old. Brain scan showed some white matter. She was put on meds to slow progression. I believe today her condition would be called FTD. She had lots of headaches,stress with job and not a very good diet. She loved chocolate and Coke. But she did love to go for walks often. By 2022 she had deteriorated so much I could not properly care for her, and found a good care facility. This is a very devastating disease. Later that year she passed away. I am sharing this information in the hope that it may help others. Thank you Dr. Sullivan for all your work and dedication. 😇
Alzheimer's/certain other dementias are so intertwined with insulin resistance, they're calling it type 3 diabetes. Not that it's a separate type, just should be recognized like retinopathy and kidney/heart disease are to follow diabetes. I'm sorry to hear it
I was just recently advised that I have this after having an MRI of the brain. This video has been so very informative and now I'm not as afraid as I was when I read the report. Thank you for being a blessing
I feel the same way. I don’t feel as afraid anymore after watching your easy to understand video. Your house is beautiful and your skin is as well. May God bless you
Hi Melissa hope your doing good. I've just got my report but can't see neurologist for 8 weeks. Did your report look like this at all as I'm lost as got no answers about it. REPORT: The axial, basal and sylvian cisterns have normal characteristics. The cortical sulci retain their usual conformation. The supra - and infratentorial ventricular system preserves its topography. Multiple punctate hierinthenic lesions in Flai and T2 in the subcortival white matter and appeared microangiopathic. The brainstem does not present signal alterations No restrictive effects are evident in the brain diffusion sequence. ONCLUSION: Microangioopathic lesions Signed: Mariano Magallanes
Excellent talk! What hit me most was the lack of self-initiation. I just refuse, it seems, to do things and it has resulted in my feeling really bad about myself. This causes even more ingrained non-initiation and resulting emotions of guilt and shame. Knowing it's 'not me' but a physical manifestation of my brain it has caused my mental energy level to increase and gets me off my buns and starting to do the things I really want to do. Oh, I'm a 77 yr female with hereditary heart disease and have had 1 heart attack and 2 mild strokes. All I can say is thank you, thank you, thank you!
Thanksto you to this explanation in 1998 I took a brindar MRI the diagnosis was atrophy both parietalwith White matters but I WAS 40 years ols I WAS working with chemicals but no explanationand is Boeing continuos no explanationuntil now I took severas times CT sean and MRI and lastima week I took another because I have pernicious anemia and dizziness it came the same you explanation but the neurologist said it does not mean nothing for him even it was diagnosed microvascular disease but he said no meaning for him is the second one iam pre-diabetic and diagnosed with MAS multiple autoinmune disease alopecia universal hashimoto and pernicious anemia what I can do
@@OscarGarcia-yk6gqOscar, please find another doctor who is willing to engage with you as a patient. They are often hard to find now, but they are out there! I have dealt with multiple issues for many years, and my faith and family have kept me grounded. Yet, when you need medical help, there is no substitute. Look for referrals among those you trust. Do research, read, travel if you must to a University Hospital setting for a specialist. But you cannot expect a stranger to do what you won’t do for yourself. PLEASE, keep up the good fight until you partner up with a great doctor! You will be so happy that you did. God bless you, Oscar! 💗
@@OscarGarcia-yk6gq I can relate. It seems like Drs don’t know what to do with it so they either throw a chemical at it or ignore it as a normal sign of aging. 😢
yeah, and then they just want to throw psych meds down your throat; which, in my observation as a professional, just make everything worse, if not a large contributing factor for many.
I have moderate white matter disease. Everything you have said in this presentation has been helpful. I am 76 and had frequent migraines start up again last spring every day for almost two months. Had the MRI and was diagnosed. My BP varies and is normal while resting. I am a retired RN working in surgery, Long term care and later in my career , did case management, teaching PNs. I have been having frequent falls and need now to focus on my walking---just as you mentioned, My physicians at Vanderbilt are wonderful in helping me. I will start water therapy soon as I love to exercise in the pools. Thank you so much for your lecture. May God Bless you richly for this support. Judy .
I am 69. Had TBI and was found not breathing in 2006. Immediately following I had to start wearing glasses, started having decreased hearing and lost all my nursing knowledge ( I’m a RN) and had no Short term memory so unable to retrain. So in 2009 was put on 100% disabled. Now having extreme dizziness, poor balance, eyes get worse every year, decreased concentration and mental focus, falling & tripping. Now having severe BP fluctuating that got more severe about 3 mos ago( now getting under control.)HX of migraines, urinary incontinance, and lace of initiation. Forget to eat. Question: how fast will I get worse? Is this terminal? My Neurologist said my dead white matter is deep in the Front, top left & right, temples and the pond is not functioning well. THANK YOU for taking time to do your very educational videos. 💕Krista
Krista, my heart goes out to you! I experienced an mBTI 9 months ago and finally found a certified neuro-optometrist who has helped me significantly with my vision, cognition, and proprioception. We still have alot of work to do and ways to go, but it's worth the tiny improvements week to week. I hope you'll consider a neuro-optometry consult. 🙏💖
I am 46 and was diagnosed with white matter disease. I went to my Dr. and asked for testing for early onset Alzheimer's as I have been struggling with my memory and my mom got sick at just 51 years old. He did an MRI and found white matter disease. Thanks for this video. I am anxious to see the neurologist next week.
How old is you mom now? My father also got sick now and he is just 59. My MRI showed white matter disease or microvascular changes at age of 35. I have visited 2 neurologists and they just told me that i am worrying a lot about these MRI findings and it is normal to have them just a part of wear and tear.
Hi there, I’m sorry about your diagnosis, I’m 51 just had an mri yesterday and found moderate white matter with t2 flair, I had a sudden onset of vertigo 14 days ago that keeps me from doing normal daily things and since not getting better doctor ordered mri, I see neurologist Thursday but I am a wreck thinking there’s no help since I can’t even walk a straight line and not feel like everything is spinning. I hope you get answers.❤ This video was informative it I’m still scared.
Thanks for covering this issue so well!!! Your calm and respectful explanation of white matter disease has relieved a concern of mine. Finally getting a CPAP has made a huge difference in my ability to function. Sleep and oxygen are SO important!!! Thanks again. Have a blessed holiday.
I had a dramatic presentation of “numbness” and harsh tingle and clumsiness right arm, leg, then head and neck. Not a stroke. Told it was cerebral small vessel disease. But it’s have continued with many parasthesias, sudden weak feelings, feeling “stoned”, sleeping way too much, episodes sea of brain fog. Illness, “stress”, heat, “overdoing” exercise all case se it to be worse. I have searched and searched for examples in f other people with my symptoms who have small vessel disease and cannot find any examples. I’m 66, this first occurred when I was 60.
I was diagnosed at 55 and I have all those symptoms. I can barely make it across the room before dizziness threatens me with a fall. I'm worried about getting hurt falling. I have trouble remembering things like the alphabets sometimes. You are not alone. My life has become tiny because of the dizziness. Motion sickness medicine Meclizine has helped, maybe it's time to increased the dosage. I watched this video but I'm still devastated, grieving and afraid for my future. I wouldn't wish this on my worst enemy. Symptoms began for me 4 years ago right after thyroid cancer surgery. Its been a steep decline since then. I still have cancer cells in my throat & no thyroid. Can anyone else hear the clock ticking? Sorry my pov is a little negative. This diagnosis just made me feel mortal fragility. And it's still very recent that I was diagnosed. I'm just so tired of devastating news since I recently found out both my heart & my brain are getting too little blood supply. Best Wishes, Everyone.
Unfortunately for me and my family, statins have caused us severe cognitive side effects. My father was told that his episode of being so confused that he sat on a laundry basket and used it as a toilet was dementia and we were told to put him in a nursing home. We asked the doctor to review his medications and found that he had reported problems with confusion when taking statins and had been taken off them but another doctor put him back on them. He was admitted to the hospital and taken off the statins for the final time and eventually regained his memory and ability to take care of himself and his financial matter as normal. However, he said he never felt the same. I hope there will be something else besides statins to help with vascular health for those of us who can't tolerate them.
There is an alternative. I have genetic CYP450 Defects that includes toxic build up of statin medications. Instead I take the rx ezetimibe. It reduces bad cholesterol 25% and has been effective for me.
Statins are bad. A main stream medical relic of the pharma. Plenty of evidence based research solutions are available that have surpassed this form of treatment.
This is why i looked at the comments my jaw dropped when she praised statins and I know for a fact the statins messed up my mother I told her years ago to get off it that it's going to cause her diabetes and dementia guess what I'm dealing with I have to clean up this mess and the rest of my life is ruined caretaking it is 24/7 and at this point taking her off it hasnt helped. Shes w me now in my 1 bdrm apt. She doesnt want to stay in her condo its been 2 yrs nonstop and tge last 3 months, entire summer at my house. The damage these medications do is criminal
Thanks for sharing this. I've been trying to convince my relative to stop theirs since they are declining too. But they won't because they do whatever the docs tell them to. They stopped for a period of time and their cognition and memory restored. Their depression improved. About 6 months later they went back to the doc and the doc asked why they weren't taking them and so my relative went back on them. They don't even need them, their cholesterol is only barely on the the high side
Thank you so much. I was in hospital recently for an unrelated matter. I had an MRI and it said 'advanced cerebral small vessel disease'. No other comments, no recommendations. I've been trying everywhere to make sense of this and have just ended up scared. Thanks to this video I now understand why my ability to multi-task has almost disappeared. Why I just can't be bothered to do the things I like to do and why I need a walking stick these days. Just knowing this would make me depressed, but your comments on getting fitter etc make me hope I can fight this thing. I'm 77 but not out yet!
I'm 38 had a stroke in 2015 my MRI this week showed more white matter this exam than my last. That was the short answer I got over the phone, this video was much more helpful. Thanks
I’m 58 years old was diagnosed with white matter disease plus small chronic vessel ischemia disease, also partially empty sella, so I feel the concern. My first Brain Dr. told me everything was good, but been a nurse yourself you know how to read you tests and lab work, I just think she didn’t care because she wanted to give medication that didn’t fit the diagnosis. So now I m seen a different Dr. in 3 weeks
I’m 57 and I’ve been diagnosed with this among other things and I just want to tell you you were the most informative person I have ever heard thank you so much
I'm young and I have white matter disease. I stumbled across your video and I feel I can trust your information. This has been very informative but not too clinical to understand. My words aren't giving the true emotion behind how happy I am to have found this video. Thank you
Thank you so much for this inspiring video. Three weeks ago I experienced a violent fall in my bathroom that included a hard smack to my forehead, injuring my nose, eyebrow bone, neck, shoulder and many more areas of the body. After going to urgent care I was sent to radiology department for a CT scan. Next thing I know they say severe concussion and mild Microvascular ischemic Disease. I am 67 years old with existing memory deficit for about a year now. This diagnosis totally freaked me out. You have explained this so well, you are so kind to give the good news to me that my daily life habits can help me live the long life I have strived to live. As an artist, I have goals to paint as long as I can stand up and hold a paintbrush in my hand. You have given me so much hope now knowing that I will live to see the days where my collection of art will mean something. I look forward to continuing my daily walking routine and also working out with my PT. Thank you so very much. God bless you. SR Wolf Studio Arts.
I am 65 and just had an MRI. i had a major and minor stroke 10 years ago. I am doing great thanks to the clot busting medication given to me after I was so quickly taken to the hospital. Thankful that my husband knew the signs of stroke and was still home to help me. Physical therapy was a life changer. I am still working and driving again. Recently I noticed having some memory issues and i had fallen a couple of times. So back to the MRI my primary ordered...I saw the report on the portal before getting the call from doctor's office and it was as you described about white matter disease. When i got the call from doctor's office. They said damage from original strokes could be seen but no other stroke indication. Also no sign of early dementia. They said nothing about white matter disease. I stumbled upon your video which had been very helpful because I'm at the "what do i do now" place.
Thank you very much for taking the time to explain this. My wife was recently diagnosed with WMD as a result of scanning for possible balance and other issues. Her diagnosis was mild hyperentsities. She is experiencing minor balance issues, memory, multi tasking and increasing urinary incontinence problems. She is 68 and a smoker who refuses to give it up. At this time she isn't truly convinced the disease is contributing to her problems which I understand. She is scheduled for a sleep study and then some cognitive tests before we follow-up with her neurologist.
LACK OF INITIATION: UK here....tky for this detailed explanation. Post diagnosis i wasn't given much info but given anti platelets, diabetes (T2) med changed, already on statins. BUT...no one has mentioned this lack of initiation issue, and wish they had as it explains a lot of my apathy. Its been bldy hard to even leave my house and if I hadn't broken my shoulder after falling down whole flight of stairs and had to go to A&E (ER) then subsequent trauma clinic and physiotherapy appointments, I doubt I would have. So at least I now know why this apathy is happening. Thank you
Thank you so much for posting this video. My husband has suffered cognitive decline over the past few years and refused to see a neurologist or have an MRI. He finally had an MRI several months ago and the neurologist said he has White Matter Dementia. There is next to no information out there about White matter dementia. All the discussion and research seems to be about Alzheimer’s. Thank you for explaining this disease. I had no idea that stroke is also a risk.
Thank you! for such enlightened information. It is the best explanation I've found about this disease. Gets straight to the point and helps me understand the condition and symptoms of my dad, who has suffered from dementia for over ten years.
Thank you! You answered so many of my questions. I was recently incidentally diagnosed with mild white matter disease. I am 61 and I’m hoping I can move forward and make the lifestyle changes that I need to, to stop the progression. I feel more hopeful after watching your video.
Such good and uplifting advice! I discovered the white matter through an MRI for something else and am very concerned. I'm visiting a neurologist today and have several questions after watching this video. THANK YOU SO MUCH FOR THIS INFORMATION!!
Thank you so much for covering this subject, I am 70 and just was diagnosed a month ago but do not know what stage, you have shared so much more than my primary Doctor, I have been all over the internet researching this disease, since then I have changed my eating mostly trying the Mediterranean diet, he did give me a slip for balancing therapy which is why I kept asking why I don’t walk straight, I finally got to go for a Ct Scan, and that was the result, he said it is nothing that can be done but with God there is always hope, my bloody pressure has lowered since I switched my food intake, I also joined the Y ( I am over weight). Listening to you also have given me hope, thank you for explaining so well and I am sorry for being so long, if you need to add something to me I appreciate it. Thanks again.❤
I was 48 when my MRI showed White Matter there were several white patches; however, the report stated this was "normal". These were clearly formed shapes that were 2-3cm, I am confident this was a stage 2 problem. Since then my physical modalities have progressed; I've addressed this with my Neologist, but the response was referred back to the MRI report. This is extremely frustrating, I realize this will only progress without intervention, and this isn't a concern to my M.D. or N.P. After this video, I understand the only help will be outside of my doctor's office or conventual medicine. Thank you for this informative video.
I echo your experience almost exactly. They either don’t know what to do or don’t want to deal with it. We shouldn’t be searching the internet after paying good $ for insurance…
Thank you for covering this as most primary physicians just blow this off as either migraine induced or age related. I have never had such a concise explanation for what concerned me and still does at the age of 70. I was extremely active as far as hiking and exercise during my 60's but during the pandemic was less active and can tell a difference on many levels. Could you talk about the significance of pulsatile tinnitus as I have developed this in the last year in my left ear and it is driving me crazy!!!
Thank you! I have severe migraines and chronic fatigue, and I was diagnosed with fibromyalgia and I had an MRI done, and it showed that I had small foci of matter , and microvascular ischemia disease, sequela. Neurologist set me up an appointment to see nurse practitioner, and I have questions for him.
I just shared this with my sister. Our mother passed away from the complications of brain atrophy. My sister and I were both informed we have these white spots ( my scan also showed a TIA sometime in my past) but nothing more was told about it to either of us. Thanks for this information. I’m 70 years old and rarely sprout a gray hair, so much for that information. When I was first informed, I resigned to the great possibility that this was inherited especially after learning my sister shows the same thing.
Okay, that answers questions I've had for years! And provides some "what next?" Answers too. Wow. So much here that applies to me and why certain things are happening. Thank you from the bottom of my heart.
I had white matter lesion and doctors dismissed as nothing . They said from migraines which I never had. I have other issues almost that look like MS. But no one takes it seriously. I don’t have high blood pressure. I’m suspecting Lyme infection.
I have white matter disease caused from HBP and non of my Dr's have brought up the use of statins. I am 63 and so glad that I took the time to listen to your program today. Thank You
Wow. After 10 years with a diagnosis of MS I went to a neurologist with a specialty in MS.Surprise! I don't have MS. Thanks for this detailed but understandable explanation of White Matter Disease. I'm still in the "what now, what next" stages. I look forward to learning more from your RUclips channel.
Wow - me, too! I got a diagnosis of MS and last week was told nope not MS - Small vessel disease. I was thrilled to not have MS, but didn't realize this was serious until I accompanied my son to a geneticist and when it came up in the family history that I had this, the doctor looked at me so sadly and gave my a sincere "I am SO sorry". THAT freaked me out.
Thank you! Thank you! ❤️ I'm 61 and having migraines. Just got my results back from my MRI and I have mild white matter disease. I was so happy to come across your video! I'm not so frightened now❣️
I had a grand mall seizure as a kid and was later diagnosed with epilepsy. That was when they did a scan of my brain and found out I had white matter foci hypentensities. I just had a scan recently and the doctor pointed it out. It scared me but learning I've had it since a kid (age 10, I'm now 39), I feel like there's only so much I can do. It's still scary to hear. Thanks for touching on this topic.
Thank you for the video. I have had 3 MRI’s & 2 CT scans over a nine year period and not once has my doctor or the hospital emergency doctor ever said a thing about them. I had to ask for the reports and CD’s or I wouldn’t even know anything was going on. I had to change my primary doctor of 21 years recently because she retired. I ask My new doctor about the issues that I am having prior to watching your video. She gave me a referral to see a neuropsychologist. Your video will help me prepared with any question I may have after the testing is complete. 4 month wait to get in for the testing. I learned a lot from you video and truly appreciate you for taking the time to make it.
6/6/23: Thank you, Dr. Sullivan for this excellent video! So clear and to the point. I am 81 and a recent CT scan mentioned this white matter issue. And have recent falls, balance issues, multi-tasking difficulty, difficulty starting things, etc. I recently started walking and have a walking buddy in France. We report in by text after our walks. Helps tremendously with motivation. I have also discussed with my sister setting up a buddy system about the healthy eating. That should be a great help in starting it and sticking to it. I’m also going to look online for the balance training that you mentioned. And… I will be sharing your video with my 6 siblings. Can’t thank you enough!
You are the best educator I have heard on this disease. I am a 79 year old retired psychologist and have been diagnosed with small vessel disease. I recently had an MRI and observed the white matter in my neurologists office. She advised what I might do to deter further damage. I have never smoked or consumed alcohol. However, I do not do physical exercise due to a severe balance disorder. I am a chocaholic ! Smile. I am acutely aware I need to get my heart rate up, eat more nutritionally, and destress as my blood pressure is unstable. Again, thank you, as you provided hope that this does not have to be a sentence of severe dementia.
Why do you think many drs neglect to address this? You get the diagnosis and then left to find out what it means. You then need to find a way to minimise the spread and without guidance or referral to a specialist. Am interested to hear you perspective on this.
Thank you so much!! I was diagnosed with vascular dementia by Neurologist. I felt like, well she is the doctor BUT I really wasn’t ever convinced about her diagnosis due to several things as I have trouble with word finding but not with much else. I am 73. Thank you so much for your presentation!! I am going to research this further until I am satisfied it’s a true diagnosis.
I have been experiencing some memory issues for the last 8-10 years (I'm 53 now) which has concerned me enough to wonder if I may experience Alzheimer's disease at some point in my life. I recently found out that I have mild white matter disease and am meeting with a neurologist soon. Thank you for this informative video. It has helped to quell some of my worries and prepared me for my upcoming appointment.
I’m 58 and was just diagnosed with white matter disease. I get nauseous, dizzy, balance issues, brain fog and fatigue. My blood work has markers for Sjogrens and rheumatoid arthritis. How are you doing today? Did you get to see a neurologist? I’m so scared because I live alone and I have a long commute to my job. How will I support myself, if anything should happen to me. It’s my every day question these days. I’m hoping you’re doing well and would love to hear anything that you may be doing that has helped you.
@@sharonthepartyqueen5374 thank you for your message, makes me feel a little less alone. I experience all of the same issues you state as well. It’s very frustrating and worrisome for sure. I did see a neurologist (PA at the office) and she seemed to put me at ease by sharing that WMD is a common aging occurrence even with people my age. Im slightly doubtful still because 53 just seems rather young to me, but I’ll continue to watch my symptoms. I was told there’s no “cure” but that I can look at taking some supplements and helping with diet. Increase Omega 3 was one suggestion. Overall she didn’t seem very concerned, but being our own advocate is paramount. I will absolutely get a second opinion if I notice any increase in issues. Please keep me posted, if you don’t mind, if you learn anything new.
What about Lion's Mane supplements and Ozone Therapy. I'm 63 and I had all kinds of tests to see if I had Parkinson's or early onset Dementia which my mother had. All came out negative. I have a history of Migraines and High Blood Pressure. A few years ago I had some Vertigo that lasted a few months and tinnitus which went away and then came back and I've had for at least two years now. Had the MRI done and the doctor said it's not in my ears, it's in my brain and there is nothing I can do about it. When I recently read the report, it said I had white brain matter disease and that is what has prompted me to research it and found this helpful video. Since I took care of my mother until recently my brain had been on multi task 24/7 since I had to remember all of my mother's stuff, and my own and many times my kids stuff even though they are grown. But I still found myself with memory issues getting worse and that's why I had myself tested. So now that mom is gone, I'm starting to exercise again, and looking into other things. I love to prove medical doctors wrong so, my hope is that I can reverse it because I have a strong will. After breast cancer surgery the doctor told me I would never raise my left arm straight up. I proved him wrong. My dad was told he would never walk well after they removed his varicose veins and they wanted to amputate him in the army, but my dad would walk miles every day. I aim to be like my father. It's a matter or mind over matter. Thanks to this video I will now get a copy of this last MRI and see how many white spots I have.
I am 75 and just received my MRI results today. I went in due to tremors in my hand. I read that I had mild chronic ischemic white matter. The upside is the rest of the brain was good. I had severe migraines from puberty to menopause but no high blood pressure, heart disease, never smoked so was surprised. I do have incontinence and some minor balance issues. I will contact my GP and get a referral to a neurologist but your video was so comprehensive and reassuring at the same time. This type of reaching out from a specialist is not only informative but comforting. Many thanks ❤
Thank you for the very useful information, at 49 years I have just been given the news that I have white matter disease and I wasn't given much more information other than I should be careful and start getting an appointment with the neurologist which didn't help ! Your information did help to clear things and to be more calm, Im quiet healthy, sporty, non smoker, very low wine drinker , low cholesterol, low blood pressure BUT I suffer from migraines and I do stress easy....now I can take this into account in a more calm way so THANK YOU VERY MUCH!
I had a hot on the head that required per my age a CT examination. I got this diagnosis and it scared me. My internist told me that it is quite common in people of my age 76. And a history of chronic hypertension. But I am still concerned so I watch every video that I can to inform me. You and another video has helped to educate me and make me feel better.
Such a wonderful video, thank you. I was diagnosed with WMD following an MRI due to migraine. My MRI indicated microvascular issues in the periventricular area and a history of at least two lacunar infarcts. The neurologist who I met with refused to give me an actual diagnosis until I pinned him down with my own research after seeing my MRI report. Even then, he did not give me any concrete information on what I was dealing with and just told me to take a baby aspirin every morning and call if the headaches got worse. I actually have low blood pressure but have been diagnosed with NIDDM for seventeen years. This was so very helpful, thank you again.
My gosh...the reaction of your Neuro is more common than not. And Neuro Surgeons can be the worst. They have to have so much education but often forget the patient is at level 1 whereas it can be difficult for them to even speak plain English. Not to say there aren't exceptions (which was my experience- thanks God!) You might mention to your insurance coordinator that you need a Neuro who has the patience and ability to talk to you at a reasonable level of intellect. However, remember above all that you are your own best advocate. Keep up your own research but be sure to research the research, so to speak...keep notes, and don't ever be reluctant to call and speak with the Neuro's P.A. verbally or in a message on the portal. A good P.A. will ask the Neuro to confirm what they are about to advise you is correct. I hope all goes well for you! 🙏🏼💖
This video was exactly what I was looking for. I've tried to schedule appointments with multiple Neurologists, but the wait time is several weeks to several months. This video gave me a good understanding of where I'm at and what to expect in the future.
Thank you so much. I found you when I was researching Statins. Exactly what you said, an MRI for another issue showed I have mild white matter disease. I am 74 and see some of those symptoms. I still work and have a active social life but I’m going to up my game after listening to you.
Im 63, had am mri 5 ys ago and white matter disease was diagnosed . No one said anything to me. I never personally read the report . I was 58 then. Now after a fall, i got scanned again and i read the report. It stated tjat there was a progression!!!! WTH!!!??? NOW I am freaking out. Again no one mentioned it. I STARTED CALLING EVERYDOCTOR to find out what was going on. Proof you have to be your own best advocate. Rhis video helped explain alot, and i will keep digging thank you!!
Thank you so much! I'm 40 and recently read that I had "old mild small vessel disease" on my very recent MRI brain scan. Everything I read online scared me, so this made me feel a lot better. Thank you!
I was just shown my MRI. No explanation as you mentioned. Just lost my mom to dementia so I’m pretty sad to hear this is what I might have. But thanks for the tips. I appreciate it. May God bless you.
Enjoy your talks. It stimulates me. I worked in field for 35 years before an accident at work sent me into early retirement. I do enjoy this field an encourage all the youngbpeople in my life. I have had a cva and heart attack. I am a lucky woman. Stress Kills....you are so correct in this. Will enjoy your next conversation.
Thank you Dr Sullivan. I was diagnosed with moderate white matter disease at a younger age than what the text books describe. The team of physicians at the University of California San Francisco are active in providing therapies, life style changes and other support. Dr Sullivans statements are spot on and align with my physicians. I'm fortunate to have found Dr Sullivan on youtube. Her knowledge should be shown to all.
I was just diagnosed. My doc is scheduling me with a neurologist. I believe my cognitive issues are due to Long Covid where it hits the brain with vocabulary and names. Thanks for the informative video. I am fortunate I have low blood pressure and Bradycardia. I am 66 with a 7 year old son. I have lots to live for.
Yes, I had vascular problems in my brain 6 months after I had covid. My MRI showed I have white matter disease, as part of my long covid. I was 50 when I got my diagnosis.
I really feel there's something to this that needs to be addressed. So many people stated they had the worst migraines of their lives with covid and for some that never had them before they didn't go away. Our now 17 yo son had his first migraine with covid at 15 that didn't retract for a year, he's not functioned on the same level since and struggles daily. Mild abnormalities on EEG and imaging but they refuse to acknowledge the potential of this virus. His pediatrician knew a spunky and quick witted kid before this happened and watched him slow down at onset of the virus in the beginning. He's not the same kid and so young for this. They have to know that this virus is affecting the brain long term just in how it presents when people have it actively. I hope they're able to help you with a long term solution ❤
I’m dealing with cognitive issues. Had my MRI come back with chronic micro vascular ischemic change and mild patchy T2 flairs in the subcortical and peri ventricular. This video was helpful in understanding my issues.
Just discovered white matter in my brain which the report says non-specific but may be related to microvascular ischemic changes amongst other etiologies. Thank you for the information that you shared. It gave me some hope and confidence. Going to make appointment Monday morning.
Thank you so much for breaking this down to the layman's term. This has been seen in my brain twice but they never really talk to me about it. I'm 36 years old and I feel like I'm too young to have white matter in my brain . It was tagged as mild, but the information you provided has been very helpful.
Thank you for this! I was diagnosed in my late 20s, which was about 12 years ago. I saw different neurologists. They ran tests, but no answers. Last year, I finally found out that my cholesterol was so high when I was "Morbidly Obese", it caused atherosclerosis inside the blood vessels in my brain. I was put on baby asprin, and my migraines have gotten sooooo much better (less frequent).
You have just described my mother in laws symptoms to a T. Her neurologist has just ordered a MRI. This information , I believe will be very valuable to us as a family. Thank you!
Hello, I'm 37 and the pathologist had mentioned this on my MRI report. I have been having vertigo issues since 2014 and noticed my forgetfulness has been more than just brain fog. I normally have low blood pressure, and not a diabetic and a history of passing out since 2002. I'm hoping my neurologist will take my case seriously. This video is reassuring though.
At Mayo now due to severe vertigo episodes that I’ve had for the last 2 1/2 years. I have experienced the psychological trauma and events in lifestyles that you mentioned and have been given the FND diagnosis. I can’t tell you how relieved I am that finally after 2 1/2 years with tests, MRIs , etc. I now have the information to move forward. Your videos have been amazing and extremely enlightening and so very well accepted. Thank you so much neurologist, etc., that I finally have an answer only here at Mayo😊
Trying to figure out how I can connect with you. I’m a 35 year old with white matter. I am trying to learn more about it because the doctors where I’m at just blow me off and I have symptoms. Your video was the most informative segment that I have seen before. You explained it so much better than articles I have read etc…I do want to learn more about it as a 35 year old with symptoms. I hope you get this.
(Sorry -malfunction!) Anyway, plz post your resources & info resources. It will be of immense help to many writing in. I am a retired ( 20 yrs ago) RN. Never worked in Neurology but I have the benefit of knowing how to speak’Medicine’ ka solid nursing background. I get my info from . My tip is one that’s served me throughout my life: be curious. Ask Questions . Take notes. Seek out knowledgeable ppl. If they don’t have the answer , ask for suggestions on how you can get it. Public libraries have editions of “Dummy Books”. Enlist librarians to find appropriate material.
The brain structures have some pretty fancy names. Our community college has foldable study guides- they help to visualize and process the new information. Hoping this encouragement is helpful and clear. W
I am English and live in France. Hence it’s quite difficult to fully understand MRI results. My first one was this week and I was shocked by the result. I am in my 70s and quite fit considering but this last winter I have been unwell with fatigue and sleep problems and this has resulted in lack of exercise, weight gain and increased tinnitus and pressure in my head. I haven’t spoken to my doctor about this as I wanted to gather information rather than panic. My diagnosis is Fazekas3 which sounds severe to me but I am prepared to tackle it head on (forgive the pun). Thank you for your clear explanation it will help me in my discussions with my doctor. We tend to have a mixed French/English conversation when complicated matters are involved.
Thanks for the video, i currently am 19 years of age. Back in 2016 there were found 15 «non-spesific white matter lesions» i think that’s the correct translation from norwegian at least. Never got informed what it is, how it affects me or how to treat it. All i hear and read is that it’s very uncommon for young people, and seeing as i’m quite young i do not know if i need to worry.
I you have symptoms, it’s not unspecific. I’m amazed how unprofessional physicians can be. If you did this MRI, it’s because you feel there’s something wrong with you.
@@moxanation73Yeah i came in for a certain reason, and they didn’t think these lesions were the reason for the symptoms i came in for so they just ignored it.
@@kaspersalomonsen3617 Same for me. My anomalies on my MRIs or my Sjögren (an auto-immune disease) are never the cause of my persistent headaches but they’re totally unable to find a cause either. And believe me, I went to all the hospitals in Paris… Sad. My life is ruined, I’m only 50 (but a wreck since 2016) and nobody cares. I will never work again. The number of years to be diagnosed for known diseases is huge, it’s often between 5 and 10 years (Lupus, Sjögren, multiple sclerosis and so many others). We’re always to fat, to thin, couch patatoes, pill poppers, movie actors, attention seekers…
I just have to say you are truly a god sent angel for each and everyone of us worried about this condition . The crazy thing is my daughter was born with periventricular leukomalaysia and now here I am at 45 (I think) & it’s now showing up in my life
Thank you very much. Great presentation excellent easy to hear and understand you. I am 70 continuing study of neurology regarding my own diagnosis and wife's brain surgeries for tumor surgeries. I have brain stem injuries pons and trigeminal nerves right side of head and face. Had been quadriplegic for 2 years after hit from behind in 1991. Was unable to speak until therapy. Was able after that to earn a JD and pass bar exams. Recent surgery confirmed brain stem injuries. Interesting experience living like this. I was an Electro mechanical engineer before injury so I find neurology to be somewhat familiar logic wise. Had another neurosurgery 5 months ago to relieve compressed spinal cord at c7. God bless you Doctor for encouraging me with your teaching.
Thank you Dr Sullivan for this wonderful presentation. I am 68 and I recently had a brain MRI with and without contrast. There are multiple small deep, pericallosal and subcortical white matter signal hyperintensities in the corona radiata and centrum semiovale bilaterally. There is minimal diffuse atrophy. I have a follow up appointment in a couple of weeks. Your presentation was very helpful in explaining what may be going on with my brain. Hopefully my doctor will address these issues. Thanks again!
Thank you so much for such a clear and informative video. My MRI stated bilateral chronic white matter small vessel ischemic changes. No mention of mild, moderate or severe. Also mentioned Fazekas 1. I haven't met with my neurologist yet, but feel better prepared to ask questions thanks to your video. I'm starting improving my brain health today!
almost 2 years ago I had a cerebral infarction, instead of recovering well I felt increasingly tired, had problems with my memory and reading and writing went less and less. I got an MRI and was totally surprised by the results, I turned out to have extensive white matter abnormality and extensive research was done in the past 1.5 years. A new MRI was done 3 months ago and the white matter abnormality appeared to have expanded and I also appeared to have had 2 new small cerebral infarctions. no cause has been found, not genetic, no high blood pressure, no high sugar value. I just turned 50, my children are 13 and 15 years old, I don't have a partner and I'm exhausted, my short term memory is gone and I can't do all my hobbies anymore, my left side is weak and walking is very changing, reading and writing is very difficult and working is no longer possible. I walk the dog 4 to 5 times every day and go to physio, I also go to daytime activities, but sometimes it feels like I'm just sitting out my time, last week I had my 4th cerebral infarction and the neurologist doesn't know how he can help me other than blood thinners and pain meds i feel hopeless sometimes
You sound exactly like me. I have cerebral small vessel disease, age 55 and have had two strokes despite normal weight, regular BP, sugar, cholesterol, etc. I too now have difficulty with my walking/gait, fatigue, balance, depression, etc. I am devastated.
@@mariablohm3140 I’m so sorry! 🥺! That must feel hopeless. I’m 75 and I have some of these symptoms too. You’re so young maybe see a different neurologist..one that can offer hope..? Sending a hug! 🤗🌹
This was excellent! Thank You so Much! I do have a question though. If spikes in blood pressure cause small vessel damage in the brain how is it possible that exercise, which causes a blood pressure spike, cannot also damage the small vessels? For this reason, I am fearful of strenuous exercise, and no one has been able to clearly answer this question for me. Thank You!
This video was so very informative. I was diagnosed two years ago with White matter disease at 52. I just had an MRI this week to see if it has progressed as I've had a pretty severe headache. I learned more in this video than I learned at my neurologist. I will be seeking a new neurologist as I now know there is more treatment and care available. Thank you so very much.
Like the previous comment, I, also seem to refuse to do certain things that never made me feel hesitant before. Sometimes, distraction is my only strategy. If I can put a podcast on speaker, I can engage in these activities (like washing dishes) without any difficulty. It doesn't help my motivation any if I misplace my speaker, though. I thought I was just getting pathological bored. Thanks for this video. Correctly identifying is huge!
Just received the report from my MRI taken yesterday. This is what it says, “There are a few tiny foci of T2 FLAIR hyperintensity scattered throughout the white matter which are nonspecific, possibly sequela of migraines or minimal/early chronic microvascular ischemia”. I have a follow up with my neurologist on 2/15, and I’m hope he tells me that is nothing major and can easily be treatment, and I can live a long healthy life, because I’m only 40. I’m praying to God! Anyways, this was the most informative video I’ve found so far. Thank you for posting this!!
Same here, 4 years ago I was 27, and the mri had almost the exact same findings as yours. Luckily, my 3-months long migraine disappeared on its own miraculously after the mri and the neurologist visit. Now 4 years passed by, I have no headache and neurological symptoms at all.
Thank you! Your White Matter episode explained the disease brilliantly. Amlopdipine was prescribed for my husband, 85 years old with vascular dementia (MRI also said White Matter) shrinking brain. He has very high blood pressure. I'm seeing big improvements with Amlodipine medicine, his Dr said it will help reduce his BP & also help with blood flow to brain. Working for both issues. This is a miracle drug for us and our dementia journey.
@@vishalkasotia6703 HI! Yes my husband is doing well. And yes his first brain CT scan showed infarcts or mini strokes. Amlodipine has lowered his BP as well as improved some short-term memory. Also he's taking 5mg of Lexapro, he's not combative & no anxiety, sleeping through the night. Both drugs have helped him & saved me. Best luck with your journey. If you're dealing with dementia, you might find RUclips channel "Dementia Care Blazer " helpful.
Dr Sullivan, The way you explained this entire video was perfect. You are so smart and knowledgeable. I want to thank you for sharing this very important information and video with us. I have never seen a video where the grey matter was explained in such great detail. I will share it with family and friends. When my mom was in her early 40’s she was diagnosed with grey matter. She also had a history of mini strokes then. She had been on Coumadin and then switched to eliquis for many years. She was not a smoker and she did not have hbp. It was actually always on the low side instead. However, she did suffer from migraines and asthma a lot. Now she has atrophy of the brain and dementia. She will be 84 next week. What I find so confusing is that during the day her condition is so much better than in the evenings. Even though it’s the same brain. I know there is what they call sundown dementia. I just find it very confusing that it’s so much more worse in the evening hours and after sundown. I couldn’t sleep and I’m glad I stumbled upon this video. I will check out more of your videos as well.
In my 63 years, it’s become very clear to me that most doctors have little interest in prevention and prefer to wait until a disease has progressed to the point of being able to satisfy the insurance company where additional tests & treatments are concerned. I’m sure there’s exceptions, but not usually.
🎯 yes! I was told a nephrologist would laugh us out of the office if we showed up asking for help with a sudden, significant & persistent reduction in kidney function because it wasn't bad (enough) yet (in an otherwise healthy appearing young person). Yet when consulting "Dr Google" it said treat kidney disease early to prevent further damage!! What is wrong with doctors today that they aren't interested in the mystery of how to keep one healthy? They aren't interested in finding any causes early on to *prevent* progression of disease? 🤦♀️
THAT'S BCOS THE SICKER AND SICKER YOU CAN BECOME OR THEY CAN MAKE YOU, THEY MAKE MOOOOORE MONEY
@sanddollar252 omg you are so right I have this and a three inch cyst on my brain but they won't do nothing till I get worse they put me on med so I don't get seizures until it does worse they drain the cyst....smh
@@Ms.Candie_ now that's just absurd! What damage could be occurring in the brain while your cyst is deciding what to do next. I'd get a 2nd and 3rd opinion. Sending you lots of luck & hugs!
i have a growing arcnid cyst in the angle between the pons and cerebellum and all they did was an mri every couple of years. well now they are doing it yearly because it's still growing. at first, they said not to be concerned because it wasn't large enough to need any treatment. well, that was almost 6 years ago. it just keeps growing. now they say oh well it's not grown enough. first, the doctors' take was, that if it grows then we'll consider a treatment. Now, it's oh well, it's growing but not large enough to consider treatment. Never mind the symptoms with my vision continually declining and the pain from chronic (5-6 days per week) migraines and pressure just getting increasingly painful each year. they literally were only focus on the IF it starts to grow, and now WHEN it becomes larger ENOUGH. All I want is for them to admit that this mass in my brain needs to be addressed since it is of concern to my vision. I mean living with the pain is awful, but I'd like them to find a course of action that would treat my vision from continuing to decline, even more. At least let me claim partial blindness during parts of my days. i have a feeling that next they well say well you havnt loss ENOUGH vision YET, for it be of a concern for us to consider any type of treatment.
Thank you for this. Got a type 1 CSVD diagnosis from an MRI one year ago, along with high blood sugar, high cholesterol, and obesity. Immediately stopped all added sugars, went whole food, plant based w addition of salmon and eggs. Began a walking program. I Fast 12 hrs overnight. Have gone from a 2x to a L. All blood work in normal range. My memory and multitasking have improved, my arthritis also, and I am happier and more motivated and serene than I have been in decades! Your explanation of this scary issue is so perfect! I watched my mom increase her drinking and take to her chair as she began her decline, and the proactive lifestyle I chose has lessened my fears and shown amazing results! It was so so worth it!
WOW. Impressive. Kudos to You.
Most encouraging. Thank You.
Excellent! Keep up the good work!
Great job! You are on the right tract for quality of life.
You’ve done an amazing job. Your testimony was inspiring. Big congratulations to you! 🎉🎉🎉
👏🏻👏🏻👏🏻👍🤩
Im so glad I stumbled on this video while looking for answers that my doctors haven't given me. I had my first stroke at 43 and 6 years later a had 6 more strokes in 3 days. I was only diagnosed with white matter disease about 3 months ago and my neurologist doesn't know much about it so I'm trying to find a different one now. It's frustrating that I could have been making better health decisions for the last 10 years if any of my doctors had been able to tell me what was causing my strokes but they were all clueless. In the last 2 years I've been having trouble walking, constantly falling, can't think clearly and have had very little energy and motivation. This disease is devastating and I just feel like my life is over at 53. My heart goes out to everyone dealing with any of these issues. All I can say is take charge of your own health and don't accept "I don't know". If your doctors aren't giving you answers, find a better doctor before it's too late. Much love to ALL!
OR ask you doctor to research it and find out, so they can be of benefit to all the other patients affected over their career.
I'd be forwarding this video to your doctor. I actually did that with another issue I had, and spoke to my doctor about it, forwarding the details. He did read it and said he wasn't aware but phoned the chemist while I was with him. They will listen if they're a good doctor. I have to add here, that I'm Australian and am aware our health system and Doctors are not pharmaceutically driven as they seem to be in the US, which I'm guessing you're in.
My Father is also found to be diagnosed with this as he has severe headache all the time & have similar symptoms like low energy, motivation.
Can u share ur more experience for us to prevent it further & take precautionary measures prior..
Your exactly right! I'm in the same boat right now. But I do hv 4 autoimmune diseases, 1.Graves disease free 2. Sĵodrens disease 3. Small Fiber POLYNEUROPATHY/ legs feet kill me! 4. Purigo Nodularis recently from a dermatologist, / Skin lesions face & scalp. Recently another MRI showed more white enhancements periventrical area and subcortical area & now brain volume loss 😮🙃 😢. I hv a new neurologist appt January 21st 2024, soon now, been waiting 3 months to get in.m, possibly now MS? Especially since i hv autoimmune disease. Age 61, fairly good health? Besides autoimmune diseases and going down hill now, just feel bad all the time, sometimes 0 energy, I have flares that will land me in bed weeks or 2 to 3 months sometimes. I then hv to restrengthen my self, walk at park ect. I eat healthy, I hv trouble eating though, usually 1 good meal a day, small amounts, my digestive system doesn't work well most if time. Gastroporesis/ paralyzed stomach issues. I eat good protein, organic meat & veggies and organic fruits at night. I don't smoke nor drink. Weight about 120, 5'3. I struggle 🤷♀️ 7 specialist Dr's. 🙃 no help. I only take Metholmazole for my graves disease/ hyperthyroidism, daily 1 pill. I take krill oil, fish oils, ect. Keep my vit D levels up & checked. I try to stay healthy and try to just feel better in general. But it's a daily battle. 😢 i get no help or feed back much from the so called Dr's. 😡 Guess we'll see January 21st what this new Doc neurologist has to day about my new MRI results?? 😢🙃 😡 says a prayer 🙏🏻 for me. It may be MS? No one has said or my reports, about white matter disease, yet?? But it is periventrical area and subcortical areas, like MS, MS also can cause brain volume loss too? 😮 so, is it really MS? Or white matter disease?? Who knows right now 😢🙃??????? Only time will tell all I guess.
I'm 43yrs old and just got diagnosed. Can't think or get words out alot of the times and constant idk what to do feeling. No emotions or being able to take responsibility for my own self. It's frustrating when you've always been a single working providing momma and now a nothing. It needs more awareness for sure. Thank you thank you for this information ❤
Same here. I also have horrible brain fog, and at times I get disassociation attacks.
me? i simply dont care anymore. about anything
I’m 54 years old and going thru the same thing. MRI with and w/o contrast indicated small foci of increased T2 weighted blah blah blah deep in the subcortical white matter.🥴
Your not a nothing. Your everything to your child. I have been there. I am now 58 and got this white matter crap to! It's not b the worse thing that can happen as my brother had a fatal brain tumor. Your.doing the work of 2 parents. Pat yourself on the back !!
Ashley, You are NOT a “nothing”! God made you a miraculous woman who loves her wonderful children, extended family and friends. Read my comment. Our bodies may fail us, but this doesn’t change our importance in this life. Take rest that God has us in His loving hands.❤ Krista
My wife was diagnosed in 2017 with Alzheimer’s 52 years old. Brain scan showed some white matter. She was put on meds to slow progression. I believe today her condition would be called FTD. She had lots of headaches,stress with job and not a very good diet. She loved chocolate and Coke. But she did love to go for walks often. By 2022 she had deteriorated so much I could not properly care for her, and found a good care facility. This is a very devastating disease. Later that year she passed away. I am sharing this information in the hope that it may help others. Thank you Dr. Sullivan for all your work and dedication. 😇
You are most welcome. It's a very difficult set of diseases for many reasons.
Alzheimer's/certain other dementias are so intertwined with insulin resistance, they're calling it type 3 diabetes. Not that it's a separate type, just should be recognized like retinopathy and kidney/heart disease are to follow diabetes.
I'm sorry to hear it
My deepest condolences to you🤲🏼🙏🏼🤲🏼🙏🏼🙇🏻♀️
I'm so sorry. 🙏🏻
I was just recently advised that I have this after having an MRI of the brain. This video has been so very informative and now I'm not as afraid as I was when I read the report. Thank you for being a blessing
You are welcome!
I feel the same way. I don’t feel as afraid anymore after watching your easy to understand video. Your house is beautiful and your skin is as well. May God bless you
That's wonderful, thank you for sharing!
Hi Melissa hope your doing good. I've just got my report but can't see neurologist for 8 weeks. Did your report look like this at all as I'm lost as got no answers about it. REPORT:
The axial, basal and sylvian cisterns have normal characteristics. The cortical sulci retain their usual conformation. The supra
- and infratentorial ventricular system preserves its topography.
Multiple punctate hierinthenic lesions in Flai and T2 in the subcortival white matter and appeared microangiopathic.
The brainstem does not present signal alterations
No restrictive effects are evident in the brain diffusion sequence.
ONCLUSION:
Microangioopathic lesions
Signed: Mariano Magallanes
@MikeyIvers bit confusing but doesn't sound too bad no white matter degeneration
Excellent talk! What hit me most was the lack of self-initiation. I just refuse, it seems, to do things and it has resulted in my feeling really bad about myself. This causes even more ingrained non-initiation and resulting emotions of guilt and shame. Knowing it's 'not me' but a physical manifestation of my brain it has caused my mental energy level to increase and gets me off my buns and starting to do the things I really want to do. Oh, I'm a 77 yr female with hereditary heart disease and have had 1 heart attack and 2 mild strokes. All I can say is thank you, thank you, thank you!
You are welcome, Beverly! Keep trying!
Thanksto you to this explanation in 1998 I took a brindar MRI the diagnosis was atrophy both parietalwith White matters but I WAS 40 years ols I WAS working with chemicals but no explanationand is Boeing continuos no explanationuntil now I took severas times CT sean and MRI and lastima week I took another because I have pernicious anemia and dizziness it came the same you explanation but the neurologist said it does not mean nothing for him even it was diagnosed microvascular disease but he said no meaning for him is the second one iam pre-diabetic and diagnosed with MAS multiple autoinmune disease alopecia universal hashimoto and pernicious anemia what I can do
@@OscarGarcia-yk6gqOscar, please find another doctor who is willing to engage with you as a patient. They are often hard to find now, but they are out there! I have dealt with multiple issues for many years, and my faith and family have kept me grounded. Yet, when you need medical help, there is no substitute. Look for referrals among those you trust. Do research, read, travel if you must to a University Hospital setting for a specialist. But you cannot expect a stranger to do what you won’t do for yourself. PLEASE, keep up the good fight until you partner up with a great doctor! You will be so happy that you did. God bless you, Oscar! 💗
@@OscarGarcia-yk6gq I can relate. It seems like Drs don’t know what to do with it so they either throw a chemical at it or ignore it as a normal sign of aging. 😢
yeah, and then they just want to throw psych meds down your throat; which, in my observation as a professional, just make everything worse, if not a large contributing factor for many.
i watched like 10 videos on this condition and this one is the only one that explained it to me properly. thank you
That's quite the compliment, thank you!
I have moderate white matter disease. Everything you have said in this presentation has been helpful. I am 76 and had frequent migraines start up again last spring every day for almost two months. Had the MRI and was diagnosed. My BP varies and is normal while resting. I am a retired RN working in surgery, Long term care and later in my career , did case management, teaching PNs. I have been having frequent falls and need now to focus on my walking---just as you mentioned, My physicians at Vanderbilt are wonderful in helping me. I will start water therapy soon as I love to exercise in the pools. Thank you so much for your lecture. May God Bless you richly for this support. Judy
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May God bless you richly too🙏🏼🤲🏼😇
I am 69. Had TBI and was found not breathing in 2006. Immediately following I had to start wearing glasses, started having decreased hearing and lost all my nursing knowledge ( I’m a RN) and had no Short term memory so unable to retrain. So in 2009 was put on 100% disabled. Now having extreme dizziness, poor balance, eyes get worse every year, decreased concentration and mental focus, falling & tripping. Now having severe BP fluctuating that got more severe about 3 mos ago( now getting under control.)HX of migraines, urinary incontinance, and lace of initiation. Forget to eat.
Question: how fast will I get worse? Is this terminal?
My Neurologist said my dead white matter is deep in the Front, top left & right, temples and the pond is not functioning well. THANK YOU for taking time to do your very educational videos. 💕Krista
Krista, my heart goes out to you! I experienced an mBTI 9 months ago and finally found a certified neuro-optometrist who has helped me significantly with my vision, cognition, and proprioception. We still have alot of work to do and ways to go, but it's worth the tiny improvements week to week. I hope you'll consider a neuro-optometry consult. 🙏💖
🌹
The days I don’t want to exercise are the days I MUST
I am 46 and was diagnosed with white matter disease. I went to my Dr. and asked for testing for early onset Alzheimer's as I have been struggling with my memory and my mom got sick at just 51 years old. He did an MRI and found white matter disease. Thanks for this video. I am anxious to see the neurologist next week.
How old is you mom now? My father also got sick now and he is just 59. My MRI showed white matter disease or microvascular changes at age of 35. I have visited 2 neurologists and they just told me that i am worrying a lot about these MRI findings and it is normal to have them just a part of wear and tear.
Hi there, I’m sorry about your diagnosis, I’m 51 just had an mri yesterday and found moderate white matter with t2 flair, I had a sudden onset of vertigo 14 days ago that keeps me from doing normal daily things and since not getting better doctor ordered mri, I see neurologist Thursday but I am a wreck thinking there’s no help since I can’t even walk a straight line and not feel like everything is spinning. I hope you get answers.❤ This video was informative it I’m still scared.
How are you now
How did you go.i have wmd also but went for mri as having dizziness / woozy head .head pressure foggy head .
Thanks for covering this issue so well!!! Your calm and respectful explanation of white matter disease has relieved a concern of mine. Finally getting a CPAP has made a huge difference in my ability to function. Sleep and oxygen are SO important!!! Thanks again. Have a blessed holiday.
That's wonderful Debbie!
I appreciate your kind words, Debbie.
I had a dramatic presentation of “numbness” and harsh tingle and clumsiness right arm, leg, then head and neck. Not a stroke. Told it was cerebral small vessel disease.
But it’s have continued with many parasthesias, sudden weak feelings, feeling “stoned”, sleeping way too much, episodes sea of brain fog. Illness, “stress”, heat, “overdoing” exercise all case se it to be worse.
I have searched and searched for examples in f other people with my symptoms who have small vessel disease and cannot find any examples. I’m 66, this first occurred when I was 60.
I was diagnosed at 55 and I have all those symptoms. I can barely make it across the room before dizziness threatens me with a fall. I'm worried about getting hurt falling. I have trouble remembering things like the alphabets sometimes. You are not alone. My life has become tiny because of the dizziness. Motion sickness medicine Meclizine has helped, maybe it's time to increased the dosage. I watched this video but I'm still devastated, grieving and afraid for my future. I wouldn't wish this on my worst enemy. Symptoms began for me 4 years ago right after thyroid cancer surgery. Its been a steep decline since then. I still have cancer cells in my throat & no thyroid. Can anyone else hear the clock ticking? Sorry my pov is a little negative. This diagnosis just made me feel mortal fragility. And it's still very recent that I was diagnosed. I'm just so tired of devastating news since I recently found out both my heart & my brain are getting too little blood supply. Best Wishes, Everyone.
Unfortunately for me and my family, statins have caused us severe cognitive side effects. My father was told that his episode of being so confused that he sat on a laundry basket and used it as a toilet was dementia and we were told to put him in a nursing home. We asked the doctor to review his medications and found that he had reported problems with confusion when taking statins and had been taken off them but another doctor put him back on them. He was admitted to the hospital and taken off the statins for the final time and eventually regained his memory and ability to take care of himself and his financial matter as normal. However, he said he never felt the same. I hope there will be something else besides statins to help with vascular health for those of us who can't tolerate them.
Something similar happened to my friend's father. Best of luck to your father and you.
There is an alternative. I have genetic CYP450 Defects that includes toxic build up of statin medications. Instead I take the rx ezetimibe. It reduces bad cholesterol 25% and has been effective for me.
Statins are bad. A main stream medical relic of the pharma. Plenty of evidence based research solutions are available that have surpassed this form of treatment.
This is why i looked at the comments my jaw dropped when she praised statins and I know for a fact the statins messed up my mother I told her years ago to get off it that it's going to cause her diabetes and dementia guess what I'm dealing with I have to clean up this mess and the rest of my life is ruined caretaking it is 24/7 and at this point taking her off it hasnt helped. Shes w me now in my 1 bdrm apt. She doesnt want to stay in her condo its been 2 yrs nonstop and tge last 3 months, entire summer at my house. The damage these medications do is criminal
Thanks for sharing this. I've been trying to convince my relative to stop theirs since they are declining too. But they won't because they do whatever the docs tell them to. They stopped for a period of time and their cognition and memory restored. Their depression improved. About 6 months later they went back to the doc and the doc asked why they weren't taking them and so my relative went back on them. They don't even need them, their cholesterol is only barely on the the high side
Thank you so much. I was in hospital recently for an unrelated matter. I had an MRI and it said 'advanced cerebral small vessel disease'. No other comments, no recommendations. I've been trying everywhere to make sense of this and have just ended up scared. Thanks to this video I now understand why my ability to multi-task has almost disappeared. Why I just can't be bothered to do the things I like to do and why I need a walking stick these days. Just knowing this would make me depressed, but your comments on getting fitter etc make me hope I can fight this thing. I'm 77 but not out yet!
I was just diagnosed with White Matter disease. You’ve given me back hope, thank you🙏🏻❤️
I'm so glad.
Yay Kathy!
I'm 38 had a stroke in 2015 my MRI this week showed more white matter this exam than my last. That was the short answer I got over the phone, this video was much more helpful. Thanks
My son now 45 has had progressive white matter disease since age 32. He also has other medical issues. Do wish you the best with peace and happiness.
Tony supposedly the white matter damage is irreversible but yours got better
Whats ur next step?
Great video. It is a shame that this stuff is not talked about in highschool health class. Our daily behaviours are vital long term.
Carnivore also should be taught in school... proper human diet dr ken berry...shocking and oxalates - sally norton...wow 😢
So true, Linda!
I’m 58 years old was diagnosed with white matter disease plus small chronic vessel ischemia disease, also partially empty sella, so I feel the concern. My first Brain Dr. told me everything was good, but been a nurse yourself you know how to read you tests and lab work, I just think she didn’t care because she wanted to give medication that didn’t fit the diagnosis. So now I m seen a different Dr. in 3 weeks
I’m 57 and I’ve been diagnosed with this among other things and I just want to tell you you were the most informative person I have ever heard thank you so much
I'm young and I have white matter disease. I stumbled across your video and I feel I can trust your information. This has been very informative but not too clinical to understand. My words aren't giving the true emotion behind how happy I am to have found this video. Thank you
What caused it ? What treatment do you follow?
Good luck and best wishes
I’m 42yr old in have white matter show up on mri i always feel confused and severe headache and panic hopefully I make it
I'm new diagnosed. I'm unclear as to what is next. I see the specialists again in 2 weeks.
@@soldier2152 Im praying for us both.
@@lilianehuddleston9363 Hi. Thanks for replying. I'm newly diagnosed so specialist are weighing in now. I go back in 2 weeks.
Thank you so much for this inspiring video. Three weeks ago I experienced a violent fall in my bathroom that included a hard smack to my forehead, injuring my nose, eyebrow bone, neck, shoulder and many more areas of the body. After going to urgent care I was sent to radiology department for a CT scan. Next thing I know they say severe concussion and mild Microvascular ischemic Disease. I am 67 years old with existing memory deficit for about a year now. This diagnosis totally freaked me out. You have explained this so well, you are so kind to give the good news to me that my daily life habits can help me live the long life I have strived to live. As an artist, I have goals to paint as long as I can stand up and hold a paintbrush in my hand. You have given me so much hope now knowing that I will live to see the days where my collection of art will mean something. I look forward to continuing my daily walking routine and also working out with my PT. Thank you so very much.
God bless you. SR Wolf Studio Arts.
I am 65 and just had an MRI. i had a major and minor stroke 10 years ago. I am doing great thanks to the clot busting medication given to me after I was so quickly taken to the hospital. Thankful that my husband knew the signs of stroke and was still home to help me. Physical therapy was a life changer. I am still working and driving again. Recently I noticed having some memory issues and i had fallen a couple of times. So back to the MRI my primary ordered...I saw the report on the portal before getting the call from doctor's office and it was as you described about white matter disease. When i got the call from doctor's office. They said damage from original strokes could be seen but no other stroke indication. Also no sign of early dementia. They said nothing about white matter disease. I stumbled upon your video which had been very helpful because I'm at the "what do i do now" place.
Thank you very much for taking the time to explain this. My wife was recently diagnosed with WMD as a result of scanning for possible balance and other issues. Her diagnosis was mild hyperentsities. She is experiencing minor balance issues, memory, multi tasking and increasing urinary incontinence problems. She is 68 and a smoker who refuses to give it up. At this time she isn't truly convinced the disease is contributing to her problems which I understand. She is scheduled for a sleep study and then some cognitive tests before we follow-up with her neurologist.
LACK OF INITIATION: UK here....tky for this detailed explanation. Post diagnosis i wasn't given much info but given anti platelets, diabetes (T2) med changed, already on statins. BUT...no one has mentioned this lack of initiation issue, and wish they had as it explains a lot of my apathy.
Its been bldy hard to even leave my house and if I hadn't broken my shoulder after falling down whole flight of stairs and had to go to A&E (ER) then subsequent trauma clinic and physiotherapy appointments, I doubt I would have. So at least I now know why this apathy is happening.
Thank you
Thank you so much for posting this video. My husband has suffered cognitive decline over the past few years and refused to see a neurologist or have an MRI. He finally had an MRI several months ago and the neurologist said he has White Matter Dementia. There is next to no information out there about White matter dementia. All the discussion and research seems to be about Alzheimer’s. Thank you for explaining this disease. I had no idea that stroke is also a risk.
Thank you! for such enlightened information. It is the best explanation I've found about this disease. Gets straight to the point and helps me understand the condition and symptoms of my dad, who has suffered from dementia for over ten years.
That makes my day, thank you for sharing.
Thank you! You answered so many of my questions. I was recently incidentally diagnosed with mild white matter disease. I am 61 and I’m hoping I can move forward and make the lifestyle changes that I need to, to stop the progression. I feel more hopeful after watching your video.
Yay!
Such good and uplifting advice! I discovered the white matter through an MRI for something else and am very concerned. I'm visiting a neurologist today and have several questions after watching this video. THANK YOU SO MUCH FOR THIS INFORMATION!!
Thank you so much for covering this subject, I am 70 and just was diagnosed a month ago but do not know what stage, you have shared so much more than my primary Doctor, I have been all over the internet researching this disease, since then I have changed my eating mostly trying the Mediterranean diet, he did give me a slip for balancing therapy which is why I kept asking why I don’t walk straight, I finally got to go for a Ct Scan, and that was the result, he said it is nothing that can be done but with God there is always hope, my bloody pressure has lowered since I switched my food intake, I also joined the Y ( I am over weight). Listening to you also have given me hope, thank you for explaining so well and I am sorry for being so long, if you need to add something to me I appreciate it. Thanks again.❤
You got this! Keep going in the right direction and it will pay off!
I was 48 when my MRI showed White Matter there were several white patches; however, the report stated this was "normal". These were clearly formed shapes that were 2-3cm, I am confident this was a stage 2 problem. Since then my physical modalities have progressed; I've addressed this with my Neologist, but the response was referred back to the MRI report. This is extremely frustrating, I realize this will only progress without intervention, and this isn't a concern to my M.D. or N.P. After this video, I understand the only help will be outside of my doctor's office or conventual medicine. Thank you for this informative video.
I’m 42yr old and I have white matter I feel confused and panic all the time hopefully I will make it
@@soldier2152did u ever have a concussion? Also thyroid and hormones can cause your issues. Get a full panel thyroid test not just tsh and t3
I echo your experience almost exactly. They either don’t know what to do or don’t want to deal with it. We shouldn’t be searching the internet after paying good $ for insurance…
@@joemurphy710same…going on a year now with no answers
Thank you for covering this as most primary physicians just blow this off as either migraine induced or age related. I have never had such a concise explanation for what concerned me and still does at the age of 70. I was extremely active as far as hiking and exercise during my 60's but during the pandemic was less active and can tell a difference on many levels. Could you talk about the significance of pulsatile tinnitus as I have developed this in the last year in my left ear and it is driving me crazy!!!
Thank you! I have severe migraines and chronic fatigue, and I was diagnosed with fibromyalgia and I had an MRI done, and it showed that I had small foci of matter , and microvascular ischemia disease, sequela. Neurologist set me up an appointment to see nurse practitioner, and I have questions for him.
Me too! Sjogrens and rheumatoid arthritis came up as markers in my blood as well.
I just shared this with my sister. Our mother passed away from the complications of brain atrophy. My sister and I were both informed we have these white spots ( my scan also showed a TIA sometime in my past) but nothing more was told about it to either of us. Thanks for this information. I’m 70 years old and rarely sprout a gray hair, so much for that information. When I was first informed, I resigned to the great possibility that this was inherited especially after learning my sister shows the same thing.
Iam 54 was so stresaed when the doctor said i had ischemic changes on my mri . I enjoyed your video thankyou
Okay, that answers questions I've had for years! And provides some "what next?" Answers too. Wow. So much here that applies to me and why certain things are happening. Thank you from the bottom of my heart.
You are so welcome, Esther!
I had white matter lesion and doctors dismissed as nothing . They said from migraines which I never had. I have other issues almost that look like MS. But no one takes it seriously. I don’t have high blood pressure. I’m suspecting Lyme infection.
Get a 🧬 test done! My father has Lesions from Fabry Disease. Which is 🧬
My question is, are migraines occurring because of the lack blood supply or are migraines causing the damage to the brain?
What a blessing you are Dr. !!
I have white matter disease caused from HBP and non of my Dr's have brought up the use of statins. I am 63 and so glad that I took the time to listen to your program today. Thank You
Just diagnosed due to crushing headaches getting worse over 2 years, now migraines.
First video I've ever looked at was yours! Thank you!
I also have the small vessel disease, which they say is mild plus I now have the headaches.
Wow. After 10 years with a diagnosis of MS I went to a neurologist with a specialty in MS.Surprise! I don't have MS.
Thanks for this detailed but understandable explanation of White Matter Disease. I'm still in the "what now, what next" stages. I look forward to learning more from your RUclips channel.
Awesome, Tina. Glad you are here!
OMG I'm the same!
@@teresagreisman161
Not the most fun club to be a part of, but it’s ours.
Wow - me, too! I got a diagnosis of MS and last week was told nope not MS - Small vessel disease. I was thrilled to not have MS, but didn't realize this was serious until I accompanied my son to a geneticist and when it came up in the family history that I had this, the doctor looked at me so sadly and gave my a sincere "I am SO sorry". THAT freaked me out.
@@nyetgale
Now I’m looking at my 4 kids & 10 grandkids & wonder what’s in store for them…
Thank you! Thank you! ❤️ I'm 61 and having migraines. Just got my results back from my MRI and I have mild white matter disease. I was so happy to come across your video! I'm not so frightened now❣️
I had a grand mall seizure as a kid and was later diagnosed with epilepsy. That was when they did a scan of my brain and found out I had white matter foci hypentensities. I just had a scan recently and the doctor pointed it out. It scared me but learning I've had it since a kid (age 10, I'm now 39), I feel like there's only so much I can do. It's still scary to hear. Thanks for touching on this topic.
I have it also. Do you mind if we share numbers. I have questions
I'm 39 and facing the same issue.can anyone suggest the to - do s as of now please
Pls reply
@@USMarineCorp95pls reply
Thank you for the video. I have had 3 MRI’s & 2 CT scans over a nine year period and not once has my doctor or the hospital emergency doctor ever said a thing about them. I had to ask for the reports and CD’s or I wouldn’t even know anything was going on. I had to change my primary doctor of 21 years recently because she retired. I ask My new doctor about the issues that I am having prior to watching your video. She gave me a referral to see a neuropsychologist. Your video will help me prepared with any question I may have after the testing is complete. 4 month wait to get in for the testing. I learned a lot from you video and truly appreciate you for taking the time to make it.
6/6/23: Thank you, Dr. Sullivan for this excellent video! So clear and to the point. I am 81 and a recent CT scan mentioned this white matter issue. And have recent falls, balance issues, multi-tasking difficulty, difficulty starting things, etc. I recently started walking and have a walking buddy in France. We report in by text after our walks. Helps tremendously with motivation. I have also discussed with my sister setting up a buddy system about the healthy eating. That should be a great help in starting it and sticking to it. I’m also going to look online for the balance training that you mentioned. And… I will be sharing your video with my 6 siblings. Can’t thank you enough!
You are the best educator I have heard on this disease. I am a 79 year old retired psychologist and have been diagnosed with small vessel disease. I recently had an MRI and observed the white matter in my neurologists office. She advised what I might do to deter further damage. I have never smoked or consumed alcohol. However, I do not do physical exercise due to a severe balance disorder. I am a chocaholic ! Smile. I am acutely aware I need to get my heart rate up, eat more nutritionally, and destress as my blood pressure is unstable. Again, thank you, as you provided hope that this does not have to be a sentence of severe dementia.
That's an incredible compliment, Laurie. Thank you.
Why do you think many drs neglect to address this? You get the diagnosis and then left to find out what it means. You then need to find a way to minimise the spread and without guidance or referral to a specialist. Am interested to hear you perspective on this.
Thank you so much!! I was diagnosed with vascular dementia by Neurologist. I felt like, well she is the doctor BUT I really wasn’t ever convinced about her diagnosis due to several things as I have trouble with word finding but not with much else. I am 73.
Thank you so much for your presentation!! I am going to research this further until I am satisfied it’s a true diagnosis.
Very informative, to the point, yet calming to us sufferers.
Thankyou.
I have been experiencing some memory issues for the last 8-10 years (I'm 53 now) which has concerned me enough to wonder if I may experience Alzheimer's disease at some point in my life. I recently found out that I have mild white matter disease and am meeting with a neurologist soon. Thank you for this informative video. It has helped to quell some of my worries and prepared me for my upcoming appointment.
I’m 58 and was just diagnosed with white matter disease. I get nauseous, dizzy, balance issues, brain fog and fatigue. My blood work has markers for Sjogrens and rheumatoid arthritis. How are you doing today? Did you get to see a neurologist? I’m so scared because I live alone and I have a long commute to my job. How will I support myself, if anything should happen to me. It’s my every day question these days. I’m hoping you’re doing well and would love to hear anything that you may be doing that has helped you.
@@sharonthepartyqueen5374 thank you for your message, makes me feel a little less alone. I experience all of the same issues you state as well. It’s very frustrating and worrisome for sure. I did see a neurologist (PA at the office) and she seemed to put me at ease by sharing that WMD is a common aging occurrence even with people my age. Im slightly doubtful still because 53 just seems rather young to me, but I’ll continue to watch my symptoms. I was told there’s no “cure” but that I can look at taking some supplements and helping with diet. Increase Omega 3 was one suggestion. Overall she didn’t seem very concerned, but being our own advocate is paramount. I will absolutely get a second opinion if I notice any increase in issues. Please keep me posted, if you don’t mind, if you learn anything new.
What about Lion's Mane supplements and Ozone Therapy. I'm 63 and I had all kinds of tests to see if I had Parkinson's or early onset Dementia which my mother had. All came out negative. I have a history of Migraines and High Blood Pressure. A few years ago I had some Vertigo that lasted a few months and tinnitus which went away and then came back and I've had for at least two years now. Had the MRI done and the doctor said it's not in my ears, it's in my brain and there is nothing I can do about it. When I recently read the report, it said I had white brain matter disease and that is what has prompted me to research it and found this helpful video. Since I took care of my mother until recently my brain had been on multi task 24/7 since I had to remember all of my mother's stuff, and my own and many times my kids stuff even though they are grown. But I still found myself with memory issues getting worse and that's why I had myself tested. So now that mom is gone, I'm starting to exercise again, and looking into other things. I love to prove medical doctors wrong so, my hope is that I can reverse it because I have a strong will. After breast cancer surgery the doctor told me I would never raise my left arm straight up. I proved him wrong. My dad was told he would never walk well after they removed his varicose veins and they wanted to amputate him in the army, but my dad would walk miles every day. I aim to be like my father. It's a matter or mind over matter. Thanks to this video I will now get a copy of this last MRI and see how many white spots I have.
I am 75 and just received my MRI results today. I went in due to tremors in my hand. I read that I had mild chronic ischemic white matter. The upside is the rest of the brain was good.
I had severe migraines from puberty to menopause but no high blood pressure, heart disease, never smoked so was surprised. I do have incontinence and some minor balance issues.
I will contact my GP and get a referral to a neurologist but your video was so comprehensive and reassuring at the same time. This type of reaching out from a specialist is not only informative but comforting. Many thanks ❤
Brilliant. How fortunate are your patients.
Thank you for the very useful information, at 49 years I have just been given the news that I have white matter disease and I wasn't given much more information other than I should be careful and start getting an appointment with the neurologist which didn't help ! Your information did help to clear things and to be more calm, Im quiet healthy, sporty, non smoker, very low wine drinker , low cholesterol, low blood pressure BUT I suffer from migraines and I do stress easy....now I can take this into account in a more calm way so THANK YOU VERY MUCH!
I had a hot on the head that required per my age a CT examination. I got this diagnosis and it scared me. My internist told me that it is quite common in people of my age 76. And a history of chronic hypertension. But I am still concerned so I watch every video that I can to inform me. You and another video has helped to educate me and make me feel better.
I was just diagnosed today with white matter disease. I am 44. Thanks for the video.
Love this. Thanks. I just had an MRI and have mild white matter disease. So what you say is spot on. I need to exercise more. So thanks!
Such a wonderful video, thank you. I was diagnosed with WMD following an MRI due to migraine. My MRI indicated microvascular issues in the periventricular area and a history of at least two lacunar infarcts. The neurologist who I met with refused to give me an actual diagnosis until I pinned him down with my own research after seeing my MRI report. Even then, he did not give me any concrete information on what I was dealing with and just told me to take a baby aspirin every morning and call if the headaches got worse. I actually have low blood pressure but have been diagnosed with NIDDM for seventeen years. This was so very helpful, thank you again.
My gosh...the reaction of your Neuro is more common than not. And Neuro Surgeons can be the worst. They have to have so much education but often forget the patient is at level 1 whereas it can be difficult for them to even speak plain English. Not to say there aren't exceptions (which was my experience- thanks God!) You might mention to your insurance coordinator that you need a Neuro who has the patience and ability to talk to you at a reasonable level of intellect. However, remember above all that you are your own best advocate. Keep up your own research but be sure to research the research, so to speak...keep notes, and don't ever be reluctant to call and speak with the Neuro's P.A. verbally or in a message on the portal. A good P.A. will ask the Neuro to confirm what they are about to advise you is correct. I hope all goes well for you! 🙏🏼💖
@@Good-DaySunshine thanks! I have an appointment with the neuro PA next Thursday!
How old are you?? What treatment you new neuro prescribed?? I am 35 and have same issue.
I'm 72. No new medication, continued baby aspirin daily. @@Hi22213
This video was exactly what I was looking for. I've tried to schedule appointments with multiple Neurologists, but the wait time is several weeks to several months. This video gave me a good understanding of where I'm at and what to expect in the future.
I'm so glad, Rob.
Thank you so much. I found you when I was researching Statins. Exactly what you said, an MRI for another issue showed I have mild white matter disease. I am 74 and see some of those symptoms. I still work and have a active social life but I’m going to up my game after listening to you.
Thank you so much for this very important information. You have an excellent way of explaining these complicated issues. 💕
You are so welcome!
Im 63, had am mri 5 ys ago and white matter disease was diagnosed . No one said anything to me. I never personally read the report . I was 58 then. Now after a fall, i got scanned again and i read the report. It stated tjat there was a progression!!!! WTH!!!??? NOW I am freaking out. Again no one mentioned it. I STARTED CALLING EVERYDOCTOR to find out what was going on. Proof you have to be your own best advocate. Rhis video helped explain alot, and i will keep digging thank you!!
Thank you so much! I'm 40 and recently read that I had "old mild small vessel disease" on my very recent MRI brain scan. Everything I read online scared me, so this made me feel a lot better. Thank you!
I was just shown my MRI. No explanation as you mentioned. Just lost my mom to dementia so I’m pretty sad to hear this is what I might have. But thanks for the tips. I appreciate it. May God bless you.
Enjoy your talks. It stimulates me. I worked in field for 35 years before an accident at work sent me into early retirement. I do enjoy this field an encourage all the youngbpeople in my life. I have had a cva and heart attack. I am a lucky woman. Stress Kills....you are so correct in this. Will enjoy your next conversation.
Thank you Dr Sullivan.
I was diagnosed with moderate white matter disease at a younger age than what the text books describe.
The team of physicians at the University of California San Francisco are active in providing therapies, life style changes and other support.
Dr Sullivans statements are spot on and align with my physicians.
I'm fortunate to have found Dr Sullivan on youtube. Her knowledge should be shown to all.
Very kind of you, thank you!
I was just diagnosed. My doc is scheduling me with a neurologist. I believe my cognitive issues are due to Long Covid where it hits the brain with vocabulary and names. Thanks for the informative video. I am fortunate I have low blood pressure and Bradycardia. I am 66 with a 7 year old son. I have lots to live for.
Yes, I had vascular problems in my brain 6 months after I had covid. My MRI showed I have white matter disease, as part of my long covid. I was 50 when I got my diagnosis.
@@jjohnstone9920 are you having any symptoms?
I really feel there's something to this that needs to be addressed. So many people stated they had the worst migraines of their lives with covid and for some that never had them before they didn't go away. Our now 17 yo son had his first migraine with covid at 15 that didn't retract for a year, he's not functioned on the same level since and struggles daily. Mild abnormalities on EEG and imaging but they refuse to acknowledge the potential of this virus. His pediatrician knew a spunky and quick witted kid before this happened and watched him slow down at onset of the virus in the beginning. He's not the same kid and so young for this. They have to know that this virus is affecting the brain long term just in how it presents when people have it actively. I hope they're able to help you with a long term solution ❤
I’m dealing with cognitive issues. Had my MRI come back with chronic micro vascular ischemic change and mild patchy T2 flairs in the subcortical and peri ventricular. This video was helpful in understanding my issues.
Just discovered white matter in my brain which the report says non-specific but may be related to microvascular ischemic changes amongst other etiologies. Thank you for the information that you shared. It gave me some hope and confidence. Going to make appointment Monday morning.
I keep coming back to her video because she calms me down. Thank you.
Amen. Me too❤
Thank you so much for breaking this down to the layman's term. This has been seen in my brain twice but they never really talk to me about it. I'm 36 years old and I feel like I'm too young to have white matter in my brain . It was tagged as mild, but the information you provided has been very helpful.
Same here
I just sent you a virtual hug!!! This has calmed me down
Thank you for this video. I'm a 37 yr female. I was diagnosed w/mild sleep apena. I'm going to take this condition more serious.
Thank you for this! I was diagnosed in my late 20s, which was about 12 years ago. I saw different neurologists. They ran tests, but no answers. Last year, I finally found out that my cholesterol was so high when I was "Morbidly Obese", it caused atherosclerosis inside the blood vessels in my brain. I was put on baby asprin, and my migraines have gotten sooooo much better (less frequent).
You have just described my mother in laws symptoms to a T. Her neurologist has just ordered a MRI. This information , I believe will be very valuable to us as a family. Thank you!
Hello, I'm 37 and the pathologist had mentioned this on my MRI report. I have been having vertigo issues since 2014 and noticed my forgetfulness has been more than just brain fog. I normally have low blood pressure, and not a diabetic and a history of passing out since 2002. I'm hoping my neurologist will take my case seriously.
This video is reassuring though.
One of the best communicator's i've ever heard and, I'm a public speaker. Great topic and excellent information! I subscribed and shared! Thanks.
At Mayo now due to severe vertigo episodes that I’ve had for the last 2 1/2 years. I have experienced the psychological trauma and events in lifestyles that you mentioned and have been given the FND diagnosis. I can’t tell you how relieved I am that finally after 2 1/2 years with tests, MRIs , etc. I now have the information to move forward. Your videos have been amazing and extremely enlightening and so very well accepted. Thank you so much neurologist, etc., that I finally have an answer only here at Mayo😊
Trying to figure out how I can connect with you. I’m a 35 year old with white matter. I am trying to learn more about it because the doctors where I’m at just blow me off and I have symptoms. Your video was the most informative segment that I have seen before. You explained it so much better than articles I have read etc…I do want to learn more about it as a 35 year old with symptoms. I hope you get this.
Nk, I found out
(Sorry -malfunction!)
Anyway, plz post your resources & info resources. It will be of immense help to many writing in.
I am a retired ( 20 yrs ago) RN. Never worked in Neurology but I have the benefit of knowing how to speak’Medicine’ ka solid nursing background. I get my info from . My tip is one that’s served me throughout my life: be curious. Ask Questions . Take notes. Seek out knowledgeable ppl. If they don’t have the answer , ask for suggestions on how you can get it.
Public libraries have editions of “Dummy Books”. Enlist librarians to find appropriate material.
The brain structures have some pretty fancy names. Our community college has foldable study guides- they help to visualize and process the new information.
Hoping this encouragement is helpful and clear.
W
I too have ishemaic changed in brain at age of 35. Is white matter and ischemaic changed same?
I am English and live in France. Hence it’s quite difficult to fully understand MRI results. My first one was this week and I was shocked by the result. I am in my 70s and quite fit considering but this last winter I have been unwell with fatigue and sleep problems and this has resulted in lack of exercise, weight gain and increased tinnitus and pressure in my head. I haven’t spoken to my doctor about this as I wanted to gather information rather than panic. My diagnosis is Fazekas3 which sounds severe to me but I am prepared to tackle it head on (forgive the pun). Thank you for your clear explanation it will help me in my discussions with my doctor. We tend to have a mixed French/English conversation when complicated matters are involved.
Thanks for the video, i currently am 19 years of age. Back in 2016 there were found 15 «non-spesific white matter lesions» i think that’s the correct translation from norwegian at least. Never got informed what it is, how it affects me or how to treat it. All i hear and read is that it’s very uncommon for young people, and seeing as i’m quite young i do not know if i need to worry.
I you have symptoms, it’s not unspecific. I’m amazed how unprofessional physicians can be. If you did this MRI, it’s because you feel there’s something wrong with you.
@@moxanation73Yeah i came in for a certain reason, and they didn’t think these lesions were the reason for the symptoms i came in for so they just ignored it.
@@kaspersalomonsen3617 Same for me. My anomalies on my MRIs or my Sjögren (an auto-immune disease) are never the cause of my persistent headaches but they’re totally unable to find a cause either. And believe me, I went to all the hospitals in Paris… Sad.
My life is ruined, I’m only 50 (but a wreck since 2016) and nobody cares. I will never work again.
The number of years to be diagnosed for known diseases is huge, it’s often between 5 and 10 years (Lupus, Sjögren, multiple sclerosis and so many others). We’re always to fat, to thin, couch patatoes, pill poppers, movie actors, attention seekers…
Did you ever experience depression?
@@AhmadSarwary-c5q To some degree yes
Thank u so much for ur education of our health 😊
I wonder is something as simple as Vit B3 aka Niacin (the flushing type) would help. It is well know to vaso-dilate the small capillaries.
I know B1 is great for your brain, and being low and it can cause all kinds of problems with your brain
I just have to say you are truly a god sent angel for each and everyone of us worried about this condition . The crazy thing is my daughter was born with periventricular leukomalaysia and now here I am at 45 (I think) & it’s now showing up in my life
Thank you very much. Great presentation excellent easy to hear and understand you. I am 70 continuing study of neurology regarding my own diagnosis and wife's brain surgeries for tumor surgeries. I have brain stem injuries pons and trigeminal nerves right side of head and face. Had been quadriplegic for 2 years after hit from behind in 1991. Was unable to speak until therapy. Was able after that to earn a JD and pass bar exams. Recent surgery confirmed brain stem injuries. Interesting experience living like this. I was an Electro mechanical engineer before injury so I find neurology to be somewhat familiar logic wise. Had another neurosurgery 5 months ago to relieve compressed spinal cord at c7. God bless you Doctor for encouraging me with your teaching.
Thank you Dr Sullivan for this wonderful presentation. I am 68 and I recently had a brain MRI with and without contrast. There are multiple small deep, pericallosal and subcortical white matter signal hyperintensities in the corona radiata and centrum semiovale bilaterally. There is minimal diffuse atrophy. I have a follow up appointment in a couple of weeks. Your presentation was very helpful in explaining what may be going on with my brain. Hopefully my doctor will address these issues. Thanks again!
Thank you! I have watched at least 20 videos on this subject and no one make it more clear then you! Thank you so much!
Thank you Glen! That's quite a compliment!
Thank you so much for such a clear and informative video. My MRI stated bilateral chronic white matter small vessel ischemic changes. No mention of mild, moderate or severe. Also mentioned Fazekas 1. I haven't met with my neurologist yet, but feel better prepared to ask questions thanks to your video. I'm starting improving my brain health today!
almost 2 years ago I had a cerebral infarction, instead of recovering well I felt increasingly tired, had problems with my memory and reading and writing went less and less. I got an MRI and was totally surprised by the results, I turned out to have extensive white matter abnormality and extensive research was done in the past 1.5 years. A new MRI was done 3 months ago and the white matter abnormality appeared to have expanded and I also appeared to have had 2 new small cerebral infarctions. no cause has been found, not genetic, no high blood pressure, no high sugar value. I just turned 50, my children are 13 and 15 years old, I don't have a partner and I'm exhausted, my short term memory is gone and I can't do all my hobbies anymore, my left side is weak and walking is very changing, reading and writing is very difficult and working is no longer possible. I walk the dog 4 to 5 times every day and go to physio, I also go to daytime activities, but sometimes it feels like I'm just sitting out my time, last week I had my 4th cerebral infarction and the neurologist doesn't know how he can help me other than blood thinners and pain meds i feel hopeless sometimes
You looked at sauna? Or at the least 20 min as hot as you can handle hot baths. Checkout Dr Rhonda Patrick
@@Peshur thank you
You sound exactly like me. I have cerebral small vessel disease, age 55 and have had two strokes despite normal weight, regular BP, sugar, cholesterol, etc. I too now have difficulty with my walking/gait, fatigue, balance, depression, etc. I am devastated.
@@mariablohm3140 I’m so sorry! 🥺! That must feel hopeless.
I’m 75 and I have some of these symptoms too. You’re so young maybe see a different neurologist..one that can offer hope..? Sending a hug! 🤗🌹
Have you received any new options or suggestions? I found out that I have had more tiny strokes than they can count and am ridiculously fatigued.
This was excellent! Thank You so Much! I do have a question though. If spikes in blood pressure cause small vessel damage in the brain how is it possible that exercise, which causes a blood pressure spike, cannot also damage the small vessels? For this reason, I am fearful of strenuous exercise, and no one has been able to clearly answer this question for me. Thank You!
I have same fears & questions that you do...
This video was so very informative. I was diagnosed two years ago with White matter disease at 52. I just had an MRI this week to see if it has progressed as I've had a pretty severe headache. I learned more in this video than I learned at my neurologist. I will be seeking a new neurologist as I now know there is more treatment and care available. Thank you so very much.
What was the result of your second mri ? Did you ever get covid ?
Like the previous comment, I, also seem to refuse to do certain things that never made me feel hesitant before. Sometimes, distraction is my only strategy. If I can put a podcast on speaker, I can engage in these activities (like washing dishes) without any difficulty. It doesn't help my motivation any if I misplace my speaker, though. I thought I was just getting pathological bored. Thanks for this video. Correctly identifying is huge!
Thank, in the midst of getting diagnosed, need all the info I can get! You are very easy to understand, and you don’t talk too fast!
Thanks Lorraine!
Just received the report from my MRI taken yesterday. This is what it says, “There are a few tiny foci of T2 FLAIR hyperintensity scattered throughout the white matter which are nonspecific, possibly sequela of migraines or minimal/early chronic microvascular ischemia”. I have a follow up with my neurologist on 2/15, and I’m hope he tells me that is nothing major and can easily be treatment, and I can live a long healthy life, because I’m only 40. I’m praying to God! Anyways, this was the most informative video I’ve found so far. Thank you for posting this!!
I hope you were able to get some answers. Please post an update about your follow-up appointment.
Same here, I’m only 24 and pregnant just finding this out. What did your neurologist say?
Same here, 4 years ago I was 27, and the mri had almost the exact same findings as yours. Luckily, my 3-months long migraine disappeared on its own miraculously after the mri and the neurologist visit. Now 4 years passed by, I have no headache and neurological symptoms at all.
Yup i got moderate early onset çhronic ischemic wmd. At 28. 30 now.
64 yr old male MRI saw white matter disease. Very formative very helpful video thank you very much I appreciate you.
Thank you! Your White Matter episode explained the disease brilliantly. Amlopdipine was prescribed for my husband, 85 years old with vascular dementia (MRI also said White Matter) shrinking brain. He has very high blood pressure. I'm seeing big improvements with Amlodipine medicine, his Dr said it will help reduce his BP & also help with blood flow to brain. Working for both issues. This is a miracle drug for us and our dementia journey.
@Betty segarra,hi is your husband doing okay , does.he have lacunar infarcts ?
@@vishalkasotia6703 HI! Yes my husband is doing well. And yes his first brain CT scan showed infarcts or mini strokes. Amlodipine has lowered his BP as well as improved some short-term memory. Also he's taking 5mg of Lexapro, he's not combative & no anxiety, sleeping through the night. Both drugs have helped him & saved me. Best luck with your journey. If you're dealing with dementia, you might find RUclips channel "Dementia Care Blazer " helpful.
@@vishalkasotia6703vishal bhai kya apko bhi issue hai aisa?
Dr Sullivan, The way you explained this entire video was perfect. You are so smart and knowledgeable. I want to thank you for sharing this very important information and video with us. I have never seen a video where the grey matter was explained in such great detail. I will share it with family and friends. When my mom was in her early 40’s she was diagnosed with grey matter. She also had a history of mini strokes then. She had been on Coumadin and then switched to eliquis for many years. She was not a smoker and she did not have hbp. It was actually always on the low side instead. However, she did suffer from migraines and asthma a lot. Now she has atrophy of the brain and dementia. She will be 84 next week. What I find so confusing is that during the day her condition is so much better than in the evenings. Even though it’s the same brain. I know there is what they call sundown dementia. I just find it very confusing that it’s so much more worse in the evening hours and after sundown. I couldn’t sleep and I’m glad I stumbled upon this video. I will check out more of your videos as well.
MRI Gadolinium, which is a heavy metal is now under scrutiny for brain retention in the microvascular regions.