This video is literally bringing me to tears, especially the woman who’s discussing cognition. No one has ever understood what I’m trying to say when I’ve explained it almost exactly as she has. No one understands the exhaustion and the fatigue; where sometimes you don’t even know if you’ll make it through your shower or through the store. People think you’re crazy when you’re constantly anxious or when you are alarmed at strange skin irritations with certain temperatures. Im Cuban (well, I was born in NJ) and Cubans always think you’re a hypochondriac. However, no one knows you the way you know yourself. I used to teach Psychology at a college level. Honestly, I don’t think I’m capable anymore; both cognitively and energy-wise. I’m not diagnosed, but it is a suspicion based on MRI and symptoms. My first appointment with a neurologist is in a few days and I’m scared of sounding crazy.
Hi Sandra, I'm sorry you are going through this. What you said reminded me of when I had severe vertigo in 2009 and I was going to multiple specialists to find out what was causing it. I remember the looks I would get from other people watching me try to walk, I looked like I was drunk. And one doctor said something about my having a million dollar workup but all I wanted to do was find out what was causing my vertigo, fix it, and get back to my life. After months of balance therapy I was able to drive and work again. To this day I still have residual vertigo and other symptoms that are making me think I might have MS. Please don't worry about sounding crazy, just advocate for yourself and try to fid a support system, people you can talk to who have your back. I try to tell myself I can't control have other people feel, think, or act but it's still hard for me to accept. I hear what you are saying. I wish you all the best and you are not alone! ; ) 💕
I totally agree! I haven’t been diagnosed yet, but happened to have an mri of my brain due to horrible migraines for nearly 10 years and it came back with lesions and one on my spinal thoracic area. I also just had a spinal tap but next neuro appointment is May. I have moments where My cognitive abilities seem slower than they use to be but nothing very noticeable.. but idk how to explain it..it’s like I know this isn’t how it’s suppose to be but no one understands my worry
@@kidders2010 I'm sorry you're going through that. No one knows you better than YOU. If you feel different than you just might be but it might not be enough of a difference for someone else to see. Trust your gut and don't give up. I hope everything goes well with your appointment. Take care! ; )
I was recently diagnosed after several years of struggling in my profession. I have retired from 25 years as public health professional. People don't comprehend that I have cognitive disability after knowing me my whole life.
I was physically abused as a child and so doctors keep saying it’s just my mental health when I come in for anything for my body. My friends and family are scared it’s ms and doctors are in between something progressive and trauma… it sucks so much
And the worst mom....n my case. A lifetime of depression pins n needles. Isolation. Well I know that while staying n a clinic - gabaphentin made my pain WORSE.FELT LIKE MY LEGS WER TRAMPOLENES EVERYTIME
@@lifewithkaila863 having any kind of documented trauma or mental illness on your chart is basically a scarlet letter that means your symptoms will never be taken seriously until you arrive at the ER practically bleeding out of your eyes. i hate it.
Please please try this it can only help. Do it please!! Young, elderly, even healthy people without this. Start now. th-cam.com/video/ZVqnjAvl8jY/w-d-xo.html My mother has this. If you have severe PTSD please please work with all your doctors and therapists to try to come up with the healthiest plan for you they need to all be on board.
I'm cherishing every moment now after being in the bed for a year. Out of bed 2 months now and I do not miss it. I still have my symptoms physically and cognitively, the only difference is my embracing them and doing what I am able to do and coming up with new ways of achieving what I want to do whereas before I was not very optimistic. I was diagnosed a little over a year ago, and during my down time I found myself. MS affects me but it will not define me. Hugs to all and thank you for this video..
I always thought I was slow. I really struggle to retain new information and I can NEVER tell a story I heard without having to go back because I missed things. I have all of these issues in this video and I suspected it was related to the ms, glad this is validation.
I've always struggles with mood changes and depression. For quite a while I suspected I had bi-polar disorder but deep down I knew that wasn't right. I blamed my depression on my situation outside of MS and never contemplated that it was a symptom of something bigger. I'm also incredibly forgetful and absolutely struggle with computing new information. I think for many of us we become extremely frustrated with ourselves because we can't do what we once did and that's why we get depressed and angry, not to mention the struggle of being in physical pain and feeling numb almost everyday.
I was confirmed to have MS less than a week ago. I showed this video to my loved ones to help them understand what is happening to me and I find it to be really comprehensive and helpful, thank you for this! I am I am wishing everyone all the best 🙏🏾💛🙏🏾
Hi Nicole. I have MS as well and I've found Dr. Aron Booster extremely helpful with videos that help my family and friends to understand MS better as well. Best wishes ❤️
What i'm tired of is constantly having to explain things, explain why I am this way when people clearly have access to knowing that MS patients are like this. The strain of relationships is because I am tired of people not understanding that i'm having issues.
It's like Pain, if they don't have , it's just words to them. There is no teacher like experience. If you can relate it to something similar in their life they might understand it better.
I have spent months investigating best remedy for multiple sclerosis and discovered a fantastic website at Denelle Multi Care (google it if you are interested)
Attica Lundy Cooper I am an MS patient . diagnosed 3 yrs ago. I didn't know many of these things about cognitive difficulties until tonight. People without MS, I would expect to know even less. So I don't look at like having to explain but rather as an opportunity to educate people, even myself, who have little knowledge or understanding of MS. I've found that few do. Even doctors
My college degree is in speech communication; not to toot my horn, but I thought I was a decent public speaker; I also liked to act. In the three years since my diagnosis I witnessed severe erosion of my abilities and find myself reserved to communicate with others. Thanks for sharing this info.
Dave Callahan I find my public speaking is somewhat suffering. I often even have trouble explaining to tech service people on the phone what I want. I also lost about the top third of what was once a fair second tenor singing voice. I'm not going to quit singing, but am trying to adjust to what now can best be described as a slightly off pitch mid baritone with little power.
I use to be so good at presenting info at meetings and trainings but lately I’ve been feeling “off”. I have trouble finding words to eloquently describe things even when it’s clear in my mind but to say it correctly is a different story. When my family makes fun of me for forgetting words or sounding like a complete moron cause I can’t explain myself correctly, I tell them that I have cog fog but they laugh at that too. I’ve told them to look it up and educate themselves. I don’t really care anymore. It’s isolating because I don’t want to talk in social settings anymore. I like being around people but it’s hard to contribute my 2 cents when people are so quick to cut me off and then I forget the point I was trying to make in the first place. What I don’t understand is according to my MRI’s, I don’t have disease progression however I feel like I’m losing my mind slowly but surely. I forget everything...passwords, conversations, plans, etc. I even forget how to get around while driving at times and I’m only 43! It’s terrible
My speech idk. I was a nurse and had to quite right before covid shut down. My memory wasnt working. It sucked so bad. I was very jealous of nurses work.
I hate it because If im talking about a subject I forget information in mid sentence and I can't regain the information right away. So ppl think I'm dumb or that I don't know what I'm talking about. However, there is a small plus side though, ppl tend to talk to me about there problems bcz I don't to talk as much (that part i don't understand) So, there secrets are safe with me? :/ its frustrating and more often than not embarrassing.
gwen joplin AMEN!!! Yes, we are all getting older but...I always think “If they tried to live just ONE DAY in this body...! I’ve got so many autoimmune disorders & I’m working up to surgery #27. I don’t want pity, just don’t associate your forgetting where you parked at Wal-Mart or forgetting to water your roses for 2 days with ANYTHING close to going through anything near what I am, will always be. I just got to keep praying & biting my tongue 🤣!
I have M.S. it does take longer to absorb or retain information. But it can be done, take a lot of notes. This disease changes your life. It can be done.
Excellent informative video. I watched this because a close friend has MS. In an effort to learn more about how to help and understand it. It did a lot, and makes someone who doesn’t live with it realise how difficult it must be for lots of reasons. Thank you 🙏
Its interesting listening to the man at 1.12 speaking. I am in the early stages of my MS journey. I sometimes speak like him and have swallowing problems. I have never heard someone else speak with MS that had speech problems so it was just useful hearing him.
Mood and cognition difficulties can sure test a marriage during this quarantine...thank God for earbuds and a patient husband and an excellent care team! And pasta lol
Okay... so every person is different, and people truly handle it differently. For me 10 years MS, it motivates me. My anger/frustration is put into mainly productive actions. I was told I would be in a wheelchair upon diagnosis... thankfully still walking. I deal with many of the issues pointed out.... Take advantage of the many opportunities MS Society offers. Life isn’t perfect nor easy.... You just have to figure out a way to work with what you are given.
THANK YOU for this film. It has touched upon so much in 30 minutes. I struggle with things and have done for many years. Something that really freaks me is when people finish my sentences for me arrrrrggggghhhhh! I'm not going to be the person I was previously. A single man on my own I will rise again. Gotta learn to do things differently.
I had a spinal tap and MRI, that showed a number of lesions on my brain, 20 years ago at 19 years old after collapsing due to loss of feeling in my legs. One doctor said that I had experienced "mini strokes." The neurologist that I was referred to diagnosed me as having migraines despite the fact that I had never had a migraine at that point. After years of escalating symptoms, I personally requested another MRI that just came back as suggestive of Multiple Sclerosis. Why did a diagnosis take so long?! How much could have been done during that time to slow the progression of this disease? I'm mad, sad, and grateful at the same time. Also, having a health advocate is vitally important.
I've been on antidepressants for a few years.i had decided myself to come of them myself.and I feel so much better .I'm still on the road to recovery. But I'm climbing that ladder to be better person.🤞🤞
Fantastic video. Until now I thought I was about brain dead. Leaving tasks in the middle, constantly losing and forgetting things and those 1 to 3 trips back into the house after trying to leave to retrieve things. Oh and not recognizing people I was just with. I almost forgot 😀 picking things out of. A group like at the grocery store. I feel much better knowing much of my famous absentmindism (is that even a word? It is now.
You’re so right I was tired of being judged by the way I looked in the outside good thing is I was diagnosed But I still get it your attitude I don’t want to say whatever but whatever
Omg yes!!!I often feel literally drunk- I don’t drink- I’ve said omg it’s like I’m slurring n can’t walk straight n if I get pulled over I can’t walk a straight line! My depth perception is shot! My brain freezes n can’t remember my kids names sometimes n I’ve been to 3 diff drs- with lesion in brain lots of white matter, lesions on L4,5 n tons of other damn symptoms. WHY are Drs so damn hesitant to give DX?????😡😡😡😡😡😡
I’m the same. I’ve stopped telling doctors that I feel as if I’m drunk, yet I don’t think they believe I don’t drink. I don’t remember friend’s names & rarely contact my family because they seem embarrassed by my forgetfulness & clumsiness. I’ve been told it’s fibromyalgia, stress, age - anything rather than suggest MS
@@rosinathomas55 yup I e had fibro Sjorgrens Raynauds for years n fibromyalgia is just a word they use cuz they can’t really figure out wtf we have it’s so annoying they don’t listen to us!
I have severe distress, anxiety and depression - even the MS Neurology department think it's just all mental - they think my depression is all in my head - no one seems to get it. I can't focus and it's harder and harder for me to keep up with cognition and learning new information.
Technically depression is "all in our heads" bad joke, but I feel you. I suffer from the same. Fortunately, I have a wonderful health care team at UW MS center who are well equipped to deal with ALL MS symptoms and will bend over backwards to help me.
I have the same cognitive symptoms that you do and its so hard to deal with.I Have Debilitating Fatigue and Chronic daily Crushing Headaches. I have had MS for almost 13 years. I am very sad and I was 37 when diagnosed, and I am 50 now. I have major Anxiety, and major Depression daily and I don’t know what to do. I totally relate with you,. For sure no one Gets it and that sucks!!!!
These videos are really informative and helpful. I’m trying to start a medical science degree and got diagnosed with MS in the same year haha. All the studying is good neural rehabilitation. I want everyone to know that the brain is plastic and you can recover lost function through hard work and repetition and as this video says using your strengths to aid and deficits. I hope everyone is okay.
The speakers in the video act like we can over come the cognitive challenge. The comment if your arm is hurt you go to the doctor, so if you cognitive ability is messed up you go to the doctor. Its not that simple. One with severe MS cognitive disability cannot just go to the doctor and learn to overcome it.
Actually, you do have to go to your doctor and share your concerns. He/She may order an evaluation with a neuropsychologist, followed by evaluations by the occupation therapist or other professionals that can teach you the specific therapies, methods, routines to overcome your cognitive limitations. I went through the process and it does work.
Same with physical therapy. But some things do help if only maintenance. And sometimes you can be aided by a bit of knowledge from where you least expect it. At least they are on our side and willing to help. Modafinil.
I wish the MS Society would have more info and talks about the really bad stuff that happens with a progressive form (mine is secondary progressive). Late stage symptoms should be talked about and shown. Instead of showing most ppl with MS as doing great, walking, perhaps with cane, rarely in wheelchair…..none bedridden. Instead I’m left to guess….is this MS? I’ve never heard of this or never had or heard of this…. Please help those of us who are bedridden, late stage, being blindsided by new symptoms we don’t know are from MS, because nobody warns us or prepares us for this. Please don’t forget us.
i'm not diagnosed yet, but i am already in a wheelchair, and it's so disheartening seeing all this media about newly diagnosed people with MS and nearly all of them are walking without aids, some of them even active athletes, and the interviewed doctors talking about doing physical therapy and home activities that are impossible for me already. the *only* time i've seen media relating MS patients to wheelchair users was in a research webinar that had a stock photo of a happy wheelchair user in a proper, custom chair, and the slide was some statistics relating wheelchair use to death. like...we could give good, accessible lives if only we had more resources and information to share with one another. other disability communities i've been in are way, way more positive about and welcoming to wheelchair users, bedbound people, and those with similarly severe disabilities or late-stage illnesses. but the organized MS community in my experience so far has been weirdly exclusionary.
This was a great video and it mentioned a lot of symptoms I have. One question I have is, how can a person differentiate between MS and diabetes (I have diabetes) and ADHD, cognitively? I see so many similarities. My physical symptoms = MS (dizziness, sight problems, balance, numbness, pains that come and go and move around. I am not yet diagnosed with either MS nor ADHD and the similarities astound me.
If you have severe PTSD please please work with all your doctors and therapists to try to come up with the healthiest plan for you they need to all be on board.
I am 65 but even at 30 I have been constantly forgetting the common names of things then people too. Some get upset I need a reminder of their name. So I stay away from others and be by myself.
I was diagnosed when I was 28 and I am 36 now. I've went to school during this time and haven't had any memory issues. I had eye issues which went away quickly. I also had sensory symptoms which also went away quickly. I was never on any meds and have recently selected tecfidera and am on week 4. I've been symptom free for 5 or 6 years🤷🏽♀️ not sure why I am getting lucky. The medication is making me sick!!!
@@getintoits2786 good day. I quit the meds as I was more sick on than off. I did approx 3 months of them and decided it was in my best interest to quit. I am not researching my other options as I am in a career where medications are limited. Basically stuck at a spot where I can fly no meds or not fly and be one meds. 🤦🏽♀️🤷🏽♀️
I have MS and I have adapted to avoid conversations and to bluff that I understand when someone is talking to me and I get behind. I fixate on something I don’t understand and I can’t keep following them. My wife gets angry if I interrupt her to ask about something she just said because “if I would let her finish , she would have told me”, but I can’t keep taking in words when I’m stuck and I get a nearly physical panic like I can’t breathe in because I know I’m losing the conversation but I’m in trouble for not knowing the whole thing. I tell her I’m stuck but it just makes her think I don’t care about what she’s saying. Sometimes when my brain is tired, I close my eyes when she comes in the room so she won’t get mad at me or ask me to do something later that I won’t remember. She doesn’t understand how I can be too tired to order food but still go outside and pick up sticks so she can mow. She’ll be angry I didn’t call the power company but I have no idea what the name of it is, so I ask her how. Then she tells me the name and says google it, which I can easily do, but I don’t have any idea what she wants me to ask them. So she tells me, which might sound familiar, but I forget by the time I have a person on the phone.
please, please consider going to couples' therapy with your wife to work on y'all's communication skills. your partner may be assuming you are doing something called "weaponized incompetence" where someone pretends to not know how to do something to get out of the task. but she doesn't realize that she's hurting you by not listening to you and blaming you for things you can't control. no amount of note taking or calendar reminders on your part is going to fix the root cause of your relationship issue. and if you don't address it, it's going to fester and she's going to become more resentful and lash out.
Structural plasticity!!! I love it when I hysterically start laughing in an empty hallway/room with people...they have no idea what’s going on or what’s going to happen, as far as their anxiety goes, I’m the joker! And I think eating and forgetting that I ate food in less than 3 seconds is hilarious
Hi Abby,, start taking extra vit D3 also pre and probiotics. Eating fermented foods helps very much. Also eating salmon and other good fats. MS starts in the gut although too many ms doctors don't even take this into consideration. I have chronic progressive MS and using the above foods has really helped memory N moods swingings,, and all other ms issues. Aloha
@@ottaviazeffilini5813 I have ms 3 years since diagnosis on tysabri when you say fermented foods do you mean alcohol because I drink heaps of that and I seem to be fine at the moment touch wood lol not gonna let it get me
@@kurtkurt8938 dear Kurt, I used gin when I was young to help with leg pains but after 40 yes with this stupid I’ve come to find-in time drinking alcohol will turn bite you back hard! it will not be fine. Be kinder yourself please. Fermented foods as Kim Chee ,sauerkraut, it’s easy to ferment almost any vegetable,, google it and start feeling better. Aloha
EVERYTHING i have is THIS! WHAT IS THIS?! Just SO MANY SYMPTOMS! I used to be able to know EVERYONE ' S NAME, WHERE they were FROM - ALL of it! And now?--It's like JUST what this guy SAID! I KNOW the answer - but just can't PLACE it anymore! And DONT even get me started on the PAIN part!
So much Pain and the Pharmaceutical Companies are always changing and therefore the Generics tend not to work with my system, I just don’t know how to deal with this!
My goodness, I have so many of these symptoms and life issues. I was diagnosed with ‘severe’ Fibromyalgia in 2016, but my symptoms have got a lot worse since. Now I wonder if what I have is MS? Are there key differences between Fibromyalgia and MS? I am just 60 years of age, last week.
I have the same issue. Recently, I was due for spinal surgery, until the surgeon noticed worrying signals and referred me to a neurologist. Because I’d been diagnosed with severe fibromyalgia many years previously, I’d had MRIs where they noticed lesions in my brain, but they chose not to tell me. Instead, I was led to believe it was down to fibromyalgia. My mobility is now incredibly slow and laboured, pain is off the scale, cognition is worstening, in fact everything is just too difficult, I’m becoming more of a recluse, yet still no one has said it’s MS. I’m waiting to see a neuro psychologist, but feel this is almost a way to to dismiss my fears. My symptoms are like a tick-list of MS. I’m 69, live alone and have tried to push myself through this, yet still the symptoms worsten. When, all those years ago, the doctor said I ‘probably’ had fibromyalgia, it’s never been questioned. Any new difficulties are put down to fibro. I wish I’d never had that diagnosis, perhaps the doctors would consider MS more seriously. Until they do, I can’t get any real help.
My fatigue, mood changes and anxiety recently caused me to end a relationship. I literally can not cope with having a partner in my life and it's not fair to the partner either.
I hate when people find out (because I keep it to myself [and this is one of the reasons why]) and are dumbfounded about ... “Why do you still work then?? All you have to do is go down and sign up for social security!” 🙄😡
My family member has a lot of mood issues. short temper, cognitive issues. and anger! She will perceive something either didn’t happen or she thinks it did and that will be the truth even if it’s not! Often creating problems with others! It’s frustrating how do you handle this!!!
my family could have written this post. to answer your question of how to handle it, i would i'd tell my family: actually listen to me. i'm angry and short-tempered not because i have a neurodegenrative disability, but because my family is ignoring my disability-specific needs, is isolating, coddling, and exploiting me, and then victim-blaming me when i try to set basic, healthy boundaries. ask yourself sincerely, what is your family member saying that you aren't listening to. look past the anger. anger is an expression of overdue injustice. be honest with yourself, and face the power imbalance that you have over your disabled family member.
I do explode I would be you know at my love ones... My MS had been debilitating.. My back hurts all the time .. sitting or laying relieves the pain standing for 5 mins is soo painful takes my breath away.. I'm don't know if it's my age Im so forgetful sometimes I have a time of clarity... and hold a intelligent conversation.. I just zone out when I'm forgetful ... I'm just in the moment.
This has bring light of what my symptoms are! Now as i am watching this i know Now that im not alone i find my self in pain all the time my legs and arms are numb and hurting i also forget things from on second to another and i cant make up a cohering sentence 😢 my pain is the worse symptoms i also have had migrains since i was in junior high they told me it was due to vision issues which i thought it was true
Suggestion; updating the MS Connection webnairs shown on MS Society National website. For example, some webnairs are 9-10 years old & research has advanced in MS information. Especially racial inequality in health care systems.
I find it so hard to express what is there in my mind , to form proper sentences, ….it’s so painful beacause writing was my strongest pursuit and now I can’t make sense with two sentences
I’m still able to express myself on paper, it’s speaking the words that I can’t do. Because I can write, it’s presumed I’m ok. What no-one realises is how long it takes me to edit and re-edit everything, even a text. I can see my mistakes on paper, but can’t get the words out of my mouth.
Hello, my name is Julian, I am from Buenos Aires, Argentina. And I have MS, but the thing is that this is great and I´d love if this could have spanish subtitules to show it to my family and close ones. Thanks for uploading it, thumbs up, for sure
Omg i have MS and its been and every thing that this video is showing it prove it and we can't give up I remember want to create tie my shoe and I started crying not knowing what the hell is going on I tried Copaxone Aubagio and many more medicines and still going on but its what you have around you If its good and your happy its good .
i always had learning problems, and. i forget things quickly, and now i notice i talk really quick and or my sentences dont make sense or some times i mumble with out even noticing it
Can ms start with bad shoulder.arm.and neck pain. Sometimes tingling in fingers for short time. Feel I loos my balance when I standing still. Long vision sometimes I have to focus in I wear glasses. Can anyone advise
I have MS and I definitely have those symptoms. I first knew something was wrong when my right arm went numb and my feet. That went away, but then I had trouble walking and decided to go to the hospital where I was admitted and later diagnosed with MS. Please go see a doctor.
I have MS and some other issues. I suffered from anxiety and depression prior too my DX of MS . It only has gotten worse. My fatigue is horrible & with my other symptoms I don't get out of bed most days. It's hard as a single mom. No close family. Now no true friends either. No doctor has helped me with any of it. I feel extremely hopeless,bc the one thing I had was my intelligence. Now my memory is so bad & I can't process thoughts to make decisions. I get so frustrated! I need a good doctor...Any suggestions? I would like to know what meds Ann Marie in the video helped her too. God bless.
Hi there. I was diagnosed with ms at the age of 14. Now I'm 28. Doing yoga and meditation has helped me. I have also done one session of past life regression therapy and I'm yet to go for second session. Regression therapy have been proven to cure some medically incurable diseases. These are alternatives which are effective for ms based on my experience. I am also a medical graduate. It is not some delusional thing that I'm talking. It works. I stopped taking medications due to the side effects. U can google on Brian Weiss. He is a psychiatrist who has cured patients with hypnosis for past life regression.
Is it M.S? Lupus? Lyme? They did an "ANA" test on me 15 yrs ago.The Rheumatologist said QUOTE-"I WILL NOT DIAGNOSE YOU WITH LUPUS"(tho my test came out "in the middle"-whatever THAT meant)! So- WHAT WRONG WITH ME? Is it LUPUS? LYME? M.S.? W.T.F.? And WHY WONT they give me a SPECIFIC DIAGNOSIS?!
On symptoms that i never though it was serious is the fact that my legs never seem to rest i have to move them every second i do this so unconditionally that i don’t really notice it anymore unless i pay attention and then it gets annoying 😢 also depresion is bad i find my self feeling worthless and cry for No Reason sometimes find myself hiding so my husband doesn’t judge me
I have MS and I have pretty horrible cognitive problems. My line manager at work isn't very understanding and doesn't cut me any kind of breaks - I'm struggling to keep my head above water and my boss wants to know how many laps I'm going to do today. I have had suicidal thoughts, I think the only reason I haven't acted on them is because I need to be there for my father. When he dies, I'm pretty sure that that will be my time to end this farce. I can't think of a reason why I shouldn't - and logically, if you aren't enjoying life and the future is grim why shouldn't i end it? It's my life.
+DukeOfChirk You obviously need to adjust your life to your means. In what world do you expect a handicap to be able to keep up with non? Simplify your life- everything in it- get your costs down as little as possible. Live in a trailer if that's what it takes. You are battling- going against the stream- you need to find a way to go with it. Look at Stephan Hawking- he has had ALS for 40 years! most people die within 5 or so years. Its because he is celebrated by living in his mind- he is perfectly in tune- this must be the reason he has survived. tune in- don't try to live the race- live the best you can.
Good evening my beautiful fellow MS survivor. One of the certain things about life is that it changes. If you are having troubles and going through a bad season, it will change.....Be patient, wait on the change.In the meantime, I send you my Strength, love and peace. Very Best Life Begin! SJ
It's truly barbaric and immoral, isn't it? No, I can't imagine...and I can't imagine that there would be some who would take away our healthcare because we have so-called "pre-existing conditions"...
@@midsummermadness558 , I am so sorry to hear that. It's my hope that the situation can and will change, that people's health - their very lives - will once again be valued in the U.S., as they are in other industrialized countries.
@@emilywallachsuissa1491 I am so sorry you are suffering this way. I hope soon that they can bring in single payer healthcare for all. 13 years is way too long.
Yeah, I'd like to swim and go to the gym. I've been swimming once in 2020, and that was pretty uncomfortable bc it was an outdoor pool (all indoor pools being closed at the time), and it was unheated. ... And the last time I was at the gym was on November 1st. Then, the gym closed. It was been two and a half months and I am so sick and tired of the government's reaction to this thing!
Um Maria Reyes, who are you? Are you a doctor? Better yet, do you have the exact same issues i have with my MS? Because you went thru a process that has worked for you, does NOT mean that it will work for everyone. More importantly you should know this if you have MS. Not all MS is the same!
I’m so tired of trying to explain why I don’t relate -understand people at times in stead of saying oh I understand they think I’m slow or need to be in a medical home just give me time to understand gezze it’s not easy for me it’s frustrating for me too
Mri never confirmed it while positive with Babinski and Hoffmann signs. This condition has influenced my health, my mood and if course myboerson m. Thisbisbthe worst
+Tanya Asbreuk As an Engineer, I'm more used to the expression 'metal fatigue', but since I was diagnosed with MS (at age 54) mental fatigue is more important to me.
Quiet Hilarious How People Respond To Stuff All People...These Things Become Trying While They Laugh & Hurt Feelings Of Things Happening . MS is a real trying condition
I suspect that I my be suffering from MS and is waiting for an appointment with a neurologist. The physical discomfort I can tolerate at this stage. But losing R20 000 ($1, 144.97) in a year's time by leaving either my money or my bank card in the ATM, or losing purse with money and card, getting a R2000 fine for not having my drivers license on me because I lost it 2 days ago are all things that makes life so hard. I listened to the people with MS and how they describe their cognitive difficulties and mood disturbances and it sounds so familiar. I pray to God that I am wrong and dont have MS. I have so much admiration for these patient's courage and how they deal with life.
Go to a neurologist and find out, Gary. There are medications that can help prevent the progress of the disease. In my opinion and experience, it's better to know so you can do something about it.
I was diagnosed with MS, but I feel like after watching this video on human behaviour "changes" due to MS, I think EVERYONE has MS. My friends and family do the same stuff.
I would like to know more about CBT therapy . I would like to know more about this therapy. I went from having lesion to not having lesion. I also stop wetting my diapers. Okay, At first I notice that sweating I was not doing, so I used cooling vest to get me to the point where I sweat. Then I also found that music therapy and art therapy was good. I also brought a cubbi to get my exercise in house. I'm excited now my exercise will be an adult tricycle. My goal is to be able to walk without assistance. I walk with two poles. This allows me to keep my balance. I'm taking my first baby steps. I find that my hearing is much better. Sounds of radio, television, and even nature sounds irritate me. But I push through these problems. I also find that looking at funny or comedy shows, also help. I find that releasing endorphins helps in releasing stress. Mostly my stress is brought on by family members. I thank for information on CBT therapy.
My ex gf has ms her mood swings changed minute by minute, had to write everything down. Think it's got worse as the last 2 years since we broke she's been on and off in contact with me and used blow up for no reason nasty, blowing up at me for sleeping with other women. Emotions all over the place. Recently heard a rumour now she's suffering signs of depression. Horrible for her and to be on the receiving end. I'm away from her now, would I go back. Label me a bad guy but doubtful I would put myself into that life again.
I have 2 lesions on my brain and swelling blood vessels according to an MRI. I had a spinal tap and was diagnosed with MS recently. Now I am determined to learn more about it, get treated, and find out how I can successfully live with it. I'm scared, but I refuse to let it conquer me. I hope the best for you as well as strength and courage to help you get through.
Hello, I was afraid as you are when I was first diagnosed. Went through a number of medications , until one restored my walkin, paired with prayer and faith. Tysabri paired with a dose pack of salumedrol. It's an absolute miracle!!
there is no cure for MS as of yet. there are several pretty good *treatments* that are backed by peer-reviewed research, and some emerging research about possible preventatives like an EBV vaccine, but no cures yet. do not believe any snake-oil salesmen peddling their diets or essential oils.
My personal research is it starts from a virus and ends up autoimmune. They need to learn how to detox viruses. Not sure it will happen since pharma likes to get paid bro!
My neighbor said she has arthritis n she can do soooo much...why cant i? Should i put heavy bricks on legs n tell her walk 😂 Its no joke when u walk n have balance problems n try n do normal things that u forget what to do next😢
The sad thing is I had an MRI and the Dr still sed they didn't see anything and weren't sure WHY my legs went so numb COMPLETELY NUMB: I lost all feeling, THAT I cudnt walk. R THEY DUMB N CALIFORNIA OR JUST ACTING DUMB TO MILK THE MEDICAL INSURANCE????.... ALSO IVE ALWAYS HAD THE PINS N NEEDLES SINCE MY 1ST PREGNANCY BACK N 1998. I HAD 5 KIDS N ALL NUMBNESS N MY HANDS & up my ARM ALTERNATING BOTH SIDES,DURING PREGNANCIES. TO THE POINT OF BANGING MY HANDS AGAINST THE WALLS CUZ IT WAS SEVERELY PAINFUL. IF ONLY ID SEEN A DR. EARLY ON. MABY ......IDK. IM SURE IT HAD ALOT TO DO WITH DEPRESSION. MY DAUGHTER COMMITED SUICIDE THIS YEAR N MAY.2 WKS LATER - MY NCS SHUT DOWN. I WAS ALSO CRYING SMOKING LOTS OF CIGS, OVER HEATING N MY GARAGE ALOT. B4 THE FINAL STRAW SO ...YES DEPRESSION & HEAT, MABY VITAMIN B DEFICIENTCY. ALONG WITH TRAGEDY. IM SURE IVE HAD IT YRS. BT THEZ LAST EVENTS TOOK ME DOWN. SO THANK U UTUBE FOR THE INFO OF MY DIAGNOSES. BY DOCTORS ON UTUBE VIDEOS. SHEEESH.
This video is literally bringing me to tears, especially the woman who’s discussing cognition. No one has ever understood what I’m trying to say when I’ve explained it almost exactly as she has. No one understands the exhaustion and the fatigue; where sometimes you don’t even know if you’ll make it through your shower or through the store. People think you’re crazy when you’re constantly anxious or when you are alarmed at strange skin irritations with certain temperatures. Im Cuban (well, I was born in NJ) and Cubans always think you’re a hypochondriac. However, no one knows you the way you know yourself. I used to teach Psychology at a college level. Honestly, I don’t think I’m capable anymore; both cognitively and energy-wise. I’m not diagnosed, but it is a suspicion based on MRI and symptoms. My first appointment with a neurologist is in a few days and I’m scared of sounding crazy.
Hi Sandra, I'm sorry you are going through this. What you said reminded me of when I had severe vertigo in 2009 and I was going to multiple specialists to find out what was causing it. I remember the looks I would get from other people watching me try to walk, I looked like I was drunk. And one doctor said something about my having a million dollar workup but all I wanted to do was find out what was causing my vertigo, fix it, and get back to my life. After months of balance therapy I was able to drive and work again. To this day I still have residual vertigo and other symptoms that are making me think I might have MS. Please don't worry about sounding crazy, just advocate for yourself and try to fid a support system, people you can talk to who have your back. I try to tell myself I can't control have other people feel, think, or act but it's still hard for me to accept. I hear what you are saying. I wish you all the best and you are not alone! ; ) 💕
I totally agree! I haven’t been diagnosed yet, but happened to have an mri of my brain due to horrible migraines for nearly 10 years and it came back with lesions and one on my spinal thoracic area. I also just had a spinal tap but next neuro appointment is May. I have moments where My cognitive abilities seem slower than they use to be but nothing very noticeable.. but idk how to explain it..it’s like I know this isn’t how it’s suppose to be but no one understands my worry
@@kidders2010 I'm sorry you're going through that. No one knows you better than YOU. If you feel different than you just might be but it might not be enough of a difference for someone else to see. Trust your gut and don't give up. I hope everything goes well with your appointment. Take care! ; )
Well you don't sound crazy, you sound like the bot I call Mr imagination
I was recently diagnosed after several years of struggling in my profession. I have retired from 25 years as public health professional. People don't comprehend that I have cognitive disability after knowing me my whole life.
The sad thing… without an MRI to confirm, all of these symptoms are just chalked up to a bad attitude or being a bad person
🤭🤭🤭🤭
They told me I had “dry eyes” for the longest time. Diagnosed a year ago.
I was physically abused as a child and so doctors keep saying it’s just my mental health when I come in for anything for my body. My friends and family are scared it’s ms and doctors are in between something progressive and trauma… it sucks so much
And the worst mom....n my case. A lifetime of depression pins n needles. Isolation. Well I know that while staying n a clinic - gabaphentin made my pain WORSE.FELT LIKE MY LEGS WER TRAMPOLENES EVERYTIME
@@lifewithkaila863 having any kind of documented trauma or mental illness on your chart is basically a scarlet letter that means your symptoms will never be taken seriously until you arrive at the ER practically bleeding out of your eyes. i hate it.
A family member at an ms patient must have unlimited patience. I love my mom no matter what.
+RoastBeefTaco it would certainly help. Unfortunately, it isn't a given, that's for sure. :-o
Then u r very lucky coz i have no emotional support. Moreover i m being tortured as if i m a burden
Your mom is very lucky! Educate yourself and others, will help your mom as well!
I'm very lucky also to have such a supportive family!
Please please try this it can only help. Do it please!! Young, elderly, even healthy people without this. Start now.
th-cam.com/video/ZVqnjAvl8jY/w-d-xo.html
My mother has this.
If you have severe PTSD please please work with all your doctors and therapists to try to come up with the healthiest plan for you they need to all be on board.
@@PoojaKumari-il3oy you aren’t alone Pooja
I'm cherishing every moment now after being in the bed for a year. Out of bed 2 months now and I do not miss it. I still have my symptoms physically and cognitively, the only difference is my embracing them and doing what I am able to do and coming up with new ways of achieving what I want to do whereas before I was not very optimistic. I was diagnosed a little over a year ago, and during my down time I found myself. MS affects me but it will not define me. Hugs to all and thank you for this video..
Bless you and all that u do!
God bless you !! I wish you all the best!!!!!!
Hugs back to you!!
I always thought I was slow. I really struggle to retain new information and I can NEVER tell a story I heard without having to go back because I missed things. I have all of these issues in this video and I suspected it was related to the ms, glad this is validation.
I've always struggles with mood changes and depression. For quite a while I suspected I had bi-polar disorder but deep down I knew that wasn't right. I blamed my depression on my situation outside of MS and never contemplated that it was a symptom of something bigger. I'm also incredibly forgetful and absolutely struggle with computing new information. I think for many of us we become extremely frustrated with ourselves because we can't do what we once did and that's why we get depressed and angry, not to mention the struggle of being in physical pain and feeling numb almost everyday.
I was confirmed to have MS less than a week ago. I showed this video to my loved ones to help them understand what is happening to me and I find it to be really comprehensive and helpful, thank you for this! I am I am wishing everyone all the best 🙏🏾💛🙏🏾
Hi Nicole. I have MS as well and I've found Dr. Aron Booster extremely helpful with videos that help my family and friends to understand MS better as well. Best wishes ❤️
What i'm tired of is constantly having to explain things, explain why I am this way when people clearly have access to knowing that MS patients are like this. The strain of relationships is because I am tired of people not understanding that i'm having issues.
this is me. i wish people at my job understood.
It's like Pain, if they don't have , it's just words to them. There is no teacher like experience. If you can relate it to something similar in their life they might understand it better.
YES!
I have spent months investigating best remedy for multiple sclerosis and discovered a fantastic website at Denelle Multi Care (google it if you are interested)
Attica Lundy Cooper I am an MS patient . diagnosed 3 yrs ago. I didn't know many of these things about cognitive difficulties until tonight. People without MS, I would expect to know even less. So I don't look at like having to explain but rather as an opportunity to educate people, even myself, who have little knowledge or understanding of MS. I've found that few do. Even doctors
This made me cry. Everything I've been struggling with got brought up here.
My college degree is in speech communication; not to toot my horn, but I thought I was a decent public speaker; I also liked to act. In the three years since my diagnosis I witnessed severe erosion of my abilities and find myself reserved to communicate with others. Thanks for sharing this info.
Dave Callahan I find my public speaking is somewhat suffering. I often even have trouble explaining to tech service people on the phone what I want. I also lost about the top third of what was once a fair second tenor singing voice. I'm not going to quit singing, but am trying to adjust to what now can best be described as a slightly off pitch mid baritone with little power.
Dave Callahan : I want to hang around with people but I don't want to talk anymore . I know that I don't make much sense anymore when I say things
I use to be so good at presenting info at meetings and trainings but lately I’ve been feeling “off”. I have trouble finding words to eloquently describe things even when it’s clear in my mind but to say it correctly is a different story. When my family makes fun of me for forgetting words or sounding like a complete moron cause I can’t explain myself correctly, I tell them that I have cog fog but they laugh at that too. I’ve told them to look it up and educate themselves. I don’t really care anymore. It’s isolating because I don’t want to talk in social settings anymore. I like being around people but it’s hard to contribute my 2 cents when people are so quick to cut me off and then I forget the point I was trying to make in the first place. What I don’t understand is according to my MRI’s, I don’t have disease progression however I feel like I’m losing my mind slowly but surely. I forget everything...passwords, conversations, plans, etc. I even forget how to get around while driving at times and I’m only 43! It’s terrible
My speech idk. I was a nurse and had to quite right before covid shut down. My memory wasnt working. It sucked so bad. I was very jealous of nurses work.
Wow - could be me
I REALLY WISH MY LOVED ONES WOULD WATCH THIS AND UNDERSTAND AND ACTUALLY SHOW SOME INTEREST IN WHAT IM GOING THRU.
I hate when people will say oh ya that happens to me to its just us getting old
I hate it because If im talking about a subject I forget information in mid sentence and I can't regain the information right away. So ppl think I'm dumb or that I don't know what I'm talking about. However, there is a small plus side though, ppl tend to talk to me about there problems bcz I don't to talk as much (that part i don't understand) So, there secrets are safe with me? :/ its frustrating and more often than not embarrassing.
Me to. It's called ignorance.
gwen joplin AMEN!!! Yes, we are all getting older but...I always think “If they tried to live just ONE DAY in this body...! I’ve got so many autoimmune disorders & I’m working up to surgery #27. I don’t want pity, just don’t associate your forgetting where you parked at Wal-Mart or forgetting to water your roses for 2 days with ANYTHING close to going through anything near what I am, will always be. I just got to keep praying & biting my tongue 🤣!
What's funny is before I knew I had MS...I told myself this when I was experiencing symptoms.
Yeah, but you're not that old, and they compare having to get a blood transfusion to getting a paper cut
This is an eye opening presentation of the evolution of symptoms of MS.
I have M.S. it does take longer to absorb or retain information. But it can be done, take a lot of notes. This disease changes your life. It can be done.
Excellent informative video. I watched this because a close friend has MS. In an effort to learn more about how to help and understand it. It did a lot, and makes someone who doesn’t live with it realise how difficult it must be for lots of reasons.
Thank you 🙏
thank you for trying to learn about what your friend is going through
Its interesting listening to the man at 1.12 speaking. I am in the early stages of my MS journey. I sometimes speak like him and have swallowing problems. I have never heard someone else speak with MS that had speech problems so it was just useful hearing him.
Mood and cognition difficulties can sure test a marriage during this quarantine...thank God for earbuds and a patient husband and an excellent care team! And pasta lol
Okay... so every person is different, and people truly handle it differently. For me 10 years MS, it motivates me. My anger/frustration is put into mainly productive actions. I was told I would be in a wheelchair upon diagnosis... thankfully still walking. I deal with many of the issues pointed out.... Take advantage of the many opportunities MS Society offers.
Life isn’t perfect nor easy.... You just have to figure out a way to work with what you are given.
Tj Negrete-Carranza happy for you 🙏🏽❤️
THANK YOU for this film. It has touched upon so much in 30 minutes. I struggle with things and have done for many years.
Something that really freaks me is when people finish my sentences for me arrrrrggggghhhhh! I'm not going to be the person I was previously. A single man on my own I will rise again. Gotta learn to do things differently.
Ann Marie is amazing. So brave and strong. I will try to face MS like her.
I had a spinal tap and MRI, that showed a number of lesions on my brain, 20 years ago at 19 years old after collapsing due to loss of feeling in my legs. One doctor said that I had experienced "mini strokes." The neurologist that I was referred to diagnosed me as having migraines despite the fact that I had never had a migraine at that point. After years of escalating symptoms, I personally requested another MRI that just came back as suggestive of Multiple Sclerosis. Why did a diagnosis take so long?! How much could have been done during that time to slow the progression of this disease? I'm mad, sad, and grateful at the same time.
Also, having a health advocate is vitally important.
I've been on antidepressants for a few years.i had decided myself to come of them myself.and I feel so much better .I'm still on the road to recovery. But I'm climbing that ladder to be better person.🤞🤞
Fantastic video. Until now I thought I was about brain dead. Leaving tasks in the middle, constantly losing and forgetting things and those 1 to 3 trips back into the house after trying to leave to retrieve things. Oh and not recognizing people I was just with. I almost forgot 😀 picking things out of. A group like at the grocery store.
I feel much better knowing much of my famous absentmindism (is that even a word? It is now.
I am so impressed with this video. It made me think about what I've been doing to myself and what I can do.
You’re so right I was tired of being judged by the way I looked in the outside good thing is I was diagnosed But I still get it your attitude I don’t want to say whatever but whatever
You were able to talk about so much information on ms in this video that haven't been in some other videos. I shared this. Thank you so much!
Omg yes!!!I often feel literally drunk- I don’t drink- I’ve said omg it’s like I’m slurring n can’t walk straight n if I get pulled over I can’t walk a straight line! My depth perception is shot! My brain freezes n can’t remember my kids names sometimes n I’ve been to 3 diff drs- with lesion in brain lots of white matter, lesions on L4,5 n tons of other damn symptoms. WHY are Drs so damn hesitant to give DX?????😡😡😡😡😡😡
I’m the same. I’ve stopped telling doctors that I feel as if I’m drunk, yet I don’t think they believe I don’t drink. I don’t remember friend’s names & rarely contact my family because they seem embarrassed by my forgetfulness & clumsiness. I’ve been told it’s fibromyalgia, stress, age - anything rather than suggest MS
@@rosinathomas55 yup I e had fibro Sjorgrens Raynauds for years n fibromyalgia is just a word they use cuz they can’t really figure out wtf we have it’s so annoying they don’t listen to us!
I have severe distress, anxiety and depression - even the MS Neurology department think it's just all mental - they think my depression is all in my head - no one seems to get it.
I can't focus and it's harder and harder for me to keep up with cognition and learning new information.
God bless you and help you. I hope you find the people you need to to understand and support you in your struggle soon.
See another doctor!
Technically depression is "all in our heads" bad joke, but I feel you. I suffer from the same. Fortunately, I have a wonderful health care team at UW MS center who are well equipped to deal with ALL MS symptoms and will bend over backwards to help me.
Oh my gosh! It is all in your head, in the horrid spots MS makes in there. Depression and the roller-coaster are NORMAL for us!
I have the same cognitive symptoms that you do and its so hard to deal with.I Have Debilitating Fatigue and Chronic daily Crushing Headaches. I have had MS for almost 13 years. I am very sad and I was 37 when diagnosed, and I am 50 now. I have major Anxiety, and major Depression daily and I don’t know what to do. I totally relate with you,. For sure no one Gets it and that sucks!!!!
These videos are really informative and helpful. I’m trying to start a medical science degree and got diagnosed with MS in the same year haha. All the studying is good neural rehabilitation. I want everyone to know that the brain is plastic and you can recover lost function through hard work and repetition and as this video says using your strengths to aid and deficits. I hope everyone is okay.
The speakers in the video act like we can over come the cognitive challenge. The comment if your arm is hurt you go to the doctor, so if you cognitive ability is messed up you go to the doctor. Its not that simple. One with severe MS cognitive disability cannot just go to the doctor and learn to overcome it.
Actually, you do have to go to your doctor and share your concerns. He/She may order an evaluation with a neuropsychologist, followed by evaluations by the occupation therapist or other professionals that can teach you the specific therapies, methods, routines to overcome your cognitive limitations. I went through the process and it does work.
Same with physical therapy. But some things do help if only maintenance. And sometimes you can be aided by a bit of knowledge from where you least expect it. At least they are on our side and willing to help. Modafinil.
No, but they can learn to cope. I am
I wish the MS Society would have more info and talks about the really bad stuff that happens with a progressive form (mine is secondary progressive). Late stage symptoms should be talked about and shown. Instead of showing most ppl with MS as doing great, walking, perhaps with cane, rarely in wheelchair…..none bedridden. Instead I’m left to guess….is this MS? I’ve never heard of this or never had or heard of this…. Please help those of us who are bedridden, late stage, being blindsided by new symptoms we don’t know are from MS, because nobody warns us or prepares us for this. Please don’t forget us.
Ms is disabling, chronic illness is disabling. God Bless us we do our best. We need love too ❤
i'm not diagnosed yet, but i am already in a wheelchair, and it's so disheartening seeing all this media about newly diagnosed people with MS and nearly all of them are walking without aids, some of them even active athletes, and the interviewed doctors talking about doing physical therapy and home activities that are impossible for me already.
the *only* time i've seen media relating MS patients to wheelchair users was in a research webinar that had a stock photo of a happy wheelchair user in a proper, custom chair, and the slide was some statistics relating wheelchair use to death.
like...we could give good, accessible lives if only we had more resources and information to share with one another. other disability communities i've been in are way, way more positive about and welcoming to wheelchair users, bedbound people, and those with similarly severe disabilities or late-stage illnesses. but the organized MS community in my experience so far has been weirdly exclusionary.
This was a great video and it mentioned a lot of symptoms I have. One question I have is, how can a person differentiate between MS and diabetes (I have diabetes) and ADHD, cognitively? I see so many similarities. My physical symptoms = MS (dizziness, sight problems, balance, numbness, pains that come and go and move around. I am not yet diagnosed with either MS nor ADHD and the similarities astound me.
MS didn't stopped me from connecting with every opportunity that makes me happy.
If you have severe PTSD please please work with all your doctors and therapists to try to come up with the healthiest plan for you they need to all be on board.
I am 65 but even at 30 I have been constantly forgetting the common names of things then people too. Some get upset I need a reminder of their name. So I stay away from others and be by myself.
@@patsonlim528 Thanks if only I was 61 lol.
39 with MS... mainly affects my hands but also lose my temper really quickly 😞
I never knew MS affected mood swings until this video. I haven't experienced this with my MS.
I was diagnosed when I was 28 and I am 36 now. I've went to school during this time and haven't had any memory issues. I had eye issues which went away quickly. I also had sensory symptoms which also went away quickly. I was never on any meds and have recently selected tecfidera and am on week 4. I've been symptom free for 5 or 6 years🤷🏽♀️ not sure why I am getting lucky. The medication is making me sick!!!
Well done keep going u r so strong, how are u now?
@@getintoits2786 good day. I quit the meds as I was more sick on than off. I did approx 3 months of them and decided it was in my best interest to quit. I am not researching my other options as I am in a career where medications are limited. Basically stuck at a spot where I can fly no meds or not fly and be one meds. 🤦🏽♀️🤷🏽♀️
I have MS and I have adapted to avoid conversations and to bluff that I understand when someone is talking to me and I get behind. I fixate on something I don’t understand and I can’t keep following them.
My wife gets angry if I interrupt her to ask about something she just said because “if I would let her finish , she would have told me”, but I can’t keep taking in words when I’m stuck and I get a nearly physical panic like I can’t breathe in because I know I’m losing the conversation but I’m in trouble for not knowing the whole thing.
I tell her I’m stuck but it just makes her think I don’t care about what she’s saying. Sometimes when my brain is tired, I close my eyes when she comes in the room so she won’t get mad at me or ask me to do something later that I won’t remember.
She doesn’t understand how I can be too tired to order food but still go outside and pick up sticks so she can mow.
She’ll be angry I didn’t call the power company but I have no idea what the name of it is, so I ask her how. Then she tells me the name and says google it, which I can easily do, but I don’t have any idea what she wants me to ask them. So she tells me, which might sound familiar, but I forget by the time I have a person on the phone.
Keep notes in your phone or a planner 🧡 that was a game changer for me. Many blessings to you and your wife. I know it’s hard
please, please consider going to couples' therapy with your wife to work on y'all's communication skills.
your partner may be assuming you are doing something called "weaponized incompetence" where someone pretends to not know how to do something to get out of the task. but she doesn't realize that she's hurting you by not listening to you and blaming you for things you can't control.
no amount of note taking or calendar reminders on your part is going to fix the root cause of your relationship issue. and if you don't address it, it's going to fester and she's going to become more resentful and lash out.
Structural plasticity!!! I love it when I hysterically start laughing in an empty hallway/room with people...they have no idea what’s going on or what’s going to happen, as far as their anxiety goes, I’m the joker! And I think eating and forgetting that I ate food in less than 3 seconds is hilarious
LOL, ME TOO!!! You're my twin flame 👯🏻♀️🔥 [29 yrs old, RRMS 10+ years]
I have MS relapseing Remitting. Short term memory is really BAD 😣!!! Mood swings are bad.😛😛😛
Abby Paige Try cycling. It helps.
Hi Abby,, start taking extra vit D3 also pre and probiotics. Eating fermented foods helps very much. Also eating salmon and other good fats. MS starts in the gut although too many ms doctors don't even take this into consideration. I have chronic progressive MS and using the above foods has really helped memory N moods swingings,, and all other ms issues. Aloha
Me too.
@@ottaviazeffilini5813 I have ms 3 years since diagnosis on tysabri when you say fermented foods do you mean alcohol because I drink heaps of that and I seem to be fine at the moment touch wood lol not gonna let it get me
@@kurtkurt8938 dear Kurt, I used gin when I was young to help with leg pains but after 40 yes with this stupid I’ve come to find-in time drinking alcohol will turn bite you back hard! it will not be fine. Be kinder yourself please.
Fermented foods as Kim Chee ,sauerkraut, it’s easy to ferment almost any vegetable,, google it and start feeling better. Aloha
EVERYTHING i have is THIS! WHAT IS THIS?! Just SO MANY SYMPTOMS! I used to be able to know EVERYONE ' S NAME, WHERE they were FROM - ALL of it! And now?--It's like JUST what this guy SAID! I KNOW the answer - but just can't PLACE it anymore! And DONT even get me started on the PAIN part!
So much Pain and the Pharmaceutical Companies are always changing and therefore the Generics tend not to work with my system, I just don’t know how to deal with this!
The most frustrating thing to me is that, even though I have explained this, people don't understand about the cognitive/mood aspect!!!
I just started back to finish my college degree and my cognitive issues are driving me crazy!
Oh, I thought it was only me! ... I tried to learn Korean. Big disaster. And I used to be quite good at languages.
this is very informative. Thank you.
My goodness, I have so many of these symptoms and life issues. I was diagnosed with ‘severe’ Fibromyalgia in 2016, but my symptoms have got a lot worse since. Now I wonder if what I have is MS? Are there key differences between Fibromyalgia and MS? I am just 60 years of age, last week.
I have the same issue. Recently, I was due for spinal surgery, until the surgeon noticed worrying signals and referred me to a neurologist. Because I’d been diagnosed with severe fibromyalgia many years previously, I’d had MRIs where they noticed lesions in my brain, but they chose not to tell me. Instead, I was led to believe it was down to fibromyalgia.
My mobility is now incredibly slow and laboured, pain is off the scale, cognition is worstening, in fact everything is just too difficult, I’m becoming more of a recluse, yet still no one has said it’s MS. I’m waiting to see a neuro psychologist, but feel this is almost a way to to dismiss my fears.
My symptoms are like a tick-list of MS. I’m 69, live alone and have tried to push myself through this, yet still the symptoms worsten.
When, all those years ago, the doctor said I ‘probably’ had fibromyalgia, it’s never been questioned. Any new difficulties are put down to fibro. I wish I’d never had that diagnosis, perhaps the doctors would consider MS more seriously. Until they do, I can’t get any real help.
MS have brain lesions, fibromyalgia doesn't have any lesions or damage anywhere in the body. That's the difference
My fatigue, mood changes and anxiety recently caused me to end a relationship. I literally can not cope with having a partner in my life and it's not fair to the partner either.
I hate when people don't understand what's going on with you and they assume
Richard Saeger yup
I hate when people find out (because I keep it to myself [and this is one of the reasons why]) and are dumbfounded about ... “Why do you still work then?? All you have to do is go down and sign up for social security!”
🙄😡
My family member has a lot of mood issues. short temper, cognitive issues. and anger! She will perceive something either didn’t happen or she thinks it did and that will be the truth even if it’s not! Often creating problems with others! It’s frustrating how do you handle this!!!
Just have patience.
Sounds like schizophrenic but I’m no science guy
Hopefully she’s addressed this by now 🧡definitely need help from others with this disease. Can’t do it alone
my family could have written this post. to answer your question of how to handle it, i would i'd tell my family: actually listen to me.
i'm angry and short-tempered not because i have a neurodegenrative disability, but because my family is ignoring my disability-specific needs, is isolating, coddling, and exploiting me, and then victim-blaming me when i try to set basic, healthy boundaries.
ask yourself sincerely, what is your family member saying that you aren't listening to. look past the anger. anger is an expression of overdue injustice. be honest with yourself, and face the power imbalance that you have over your disabled family member.
Just as an outsider, its not their fault they have MS and mood swings. But they will have to take responsibility in managing it.
I do explode I would be you know at my love ones... My MS had been debilitating.. My back hurts all the time .. sitting or laying relieves the pain standing for 5 mins is soo painful takes my breath away.. I'm don't know if it's my age Im so forgetful sometimes I have a time of clarity... and hold a intelligent conversation.. I just zone out when I'm forgetful ... I'm just in the moment.
Omg. My back constantly hurts and so does my neck and both hips. I can't stand for a long period of time. My hips began to throb. So annoying.
This has bring light of what my symptoms are! Now as i am watching this i know
Now that im not alone i find my self in pain all the time my legs and arms are numb and hurting i also forget things from on second to another and i cant make up a cohering sentence 😢 my pain is the worse symptoms i also have had migrains since i was in junior high they told me it was due to vision issues which i thought it was true
Suggestion; updating the MS Connection webnairs shown on MS Society National website. For example, some webnairs are 9-10 years old & research has advanced in MS information. Especially racial inequality in health care systems.
I find it so hard to express what is there in my mind , to form proper sentences, ….it’s so painful beacause writing was my strongest pursuit and now I can’t make sense with two sentences
I’m still able to express myself on paper, it’s speaking the words that I can’t do. Because I can write, it’s presumed I’m ok. What no-one realises is how long it takes me to edit and re-edit everything, even a text. I can see my mistakes on paper, but can’t get the words out of my mouth.
Hello, my name is Julian, I am from Buenos Aires, Argentina.
And I have MS, but the thing is that this is great and I´d love if this could have spanish subtitules to show it to my family and close ones.
Thanks for uploading it, thumbs up, for sure
Yes affects my life....
Gosh I completely resonate with Ann Marie, exactly how I have been feeling
Omg i have MS and its been and every thing that this video is showing it prove it and we can't give up I remember want to create tie my shoe and I started crying not knowing what the hell is going on I tried Copaxone Aubagio and many more medicines and still going on but its what you have around you
If its good and your happy its good .
So helpful to see this
excellent !
i always had learning problems, and. i forget things quickly, and now i notice i talk really quick and or my sentences dont make sense or some times i mumble with out even noticing it
KelseyMarieex Wow I do that too
I do that too 😪
Lol all the time i thought that was just me being me
I do struggle with this issue of cognition and the associated symptoms.
I understand. but it still doesn't excuse negative actions.
I have friends that are prescribed marijuana for MS pain! Is his proven to help?
Im not an expert but it all depends on the person.
Can ms start with bad shoulder.arm.and neck pain.
Sometimes tingling in fingers for short time.
Feel I loos my balance when I standing still.
Long vision sometimes I have to focus in I wear glasses.
Can anyone advise
I have MS and I definitely have those symptoms. I first knew something was wrong when my right arm went numb and my feet. That went away, but then I had trouble walking and decided to go to the hospital where I was admitted and later diagnosed with MS. Please go see a doctor.
I have MS and some other issues. I suffered from anxiety and depression prior too my DX of MS . It only has gotten worse. My fatigue is horrible & with my other symptoms I don't get out of bed most days. It's hard as a single mom. No close family. Now no true friends either. No doctor has helped me with any of it. I feel extremely hopeless,bc the one thing I had was my intelligence. Now my memory is so bad & I can't process thoughts to make decisions. I get so frustrated! I need a good doctor...Any suggestions? I would like to know what meds Ann Marie in the video helped her too. God bless.
Hi there. I was diagnosed with ms at the age of 14. Now I'm 28. Doing yoga and meditation has helped me. I have also done one session of past life regression therapy and I'm yet to go for second session. Regression therapy have been proven to cure some medically incurable diseases. These are alternatives which are effective for ms based on my experience. I am also a medical graduate. It is not some delusional thing that I'm talking. It works. I stopped taking medications due to the side effects. U can google on Brian Weiss. He is a psychiatrist who has cured patients with hypnosis for past life regression.
th-cam.com/video/KxgD9En6Vso/w-d-xo.html meditation. isha.sadhguru.org/global/en
Is it M.S? Lupus? Lyme? They did an "ANA" test on me 15 yrs ago.The Rheumatologist said QUOTE-"I WILL NOT DIAGNOSE YOU WITH LUPUS"(tho my test came out "in the middle"-whatever THAT meant)! So- WHAT WRONG WITH ME? Is it LUPUS? LYME? M.S.? W.T.F.? And WHY WONT they give me a SPECIFIC DIAGNOSIS?!
saffy blu try the GI doctor?
Autoimmune disorders often have no definitive diagnosis. It becomes a best guess scenario
mrequi1 : I understand what you're saying
mrequi1 so true
Try a functional medicine doc. They do more in depth testing and will lean more on eliminating gluten etc
This video helped
On symptoms that i never though it was serious is the fact that my legs never seem to rest i have to move them every second i do this so unconditionally that i don’t really notice it anymore unless i pay attention and then it gets annoying 😢 also depresion is bad i find my self feeling worthless and cry for
No
Reason sometimes find myself hiding so my husband doesn’t judge me
Wish I had seen this 2yrs ago.
I have MS and I have pretty horrible cognitive problems. My line manager at work isn't very understanding and doesn't cut me any kind of breaks - I'm struggling to keep my head above water and my boss wants to know how many laps I'm going to do today. I have had suicidal thoughts, I think the only reason I haven't acted on them is because I need to be there for my father. When he dies, I'm pretty sure that that will be my time to end this farce. I can't think of a reason why I shouldn't - and logically, if you aren't enjoying life and the future is grim why shouldn't i end it? It's my life.
+DukeOfChirk You obviously need to adjust your life to your means. In what world do you expect a handicap to be able to keep up with non? Simplify your life- everything in it- get your costs down as little as possible. Live in a trailer if that's what it takes. You are battling- going against the stream- you need to find a way to go with it. Look at Stephan Hawking- he has had ALS for 40 years! most people die within 5 or so years. Its because he is celebrated by living in his mind- he is perfectly in tune- this must be the reason he has survived. tune in- don't try to live the race- live the best you can.
simplify, live in a trailer, captain beefheart did it!
jackchorn
Good evening my beautiful fellow MS survivor. One of the certain things about life is that it changes. If you are having troubles and going through a bad season, it will change.....Be patient, wait on the change.In the meantime, I send you my Strength, love and peace. Very Best Life Begin! SJ
Please don't consider suicide. Been their, done that. I believe it is the most selfish, cowardly act one can perform. Sorry, but gotta be blunt here.
IM GETTING A DOG AND TRAING IT FOR ARE THERAPY / THAN SERVICE DOG TRAINING
Can you image having these problems and no healthcare. The United States should allow people to have care.
It's truly barbaric and immoral, isn't it? No, I can't imagine...and I can't imagine that there would be some who would take away our healthcare because we have so-called "pre-existing conditions"...
I am currently in this nightmare.
@@midsummermadness558 , I am so sorry to hear that. It's my hope that the situation can and will change, that people's health - their very lives - will once again be valued in the U.S., as they are in other industrialized countries.
me as well for 13 years
@@emilywallachsuissa1491 I am so sorry you are suffering this way. I hope soon that they can bring in single payer healthcare for all. 13 years is way too long.
Yeah, I'd like to swim and go to the gym. I've been swimming once in 2020, and that was pretty uncomfortable bc it was an outdoor pool (all indoor pools being closed at the time), and it was unheated. ... And the last time I was at the gym was on November 1st. Then, the gym closed. It was been two and a half months and I am so sick and tired of the government's reaction to this thing!
But no one ever asks WHY.
Um Maria Reyes, who are you? Are you a doctor? Better yet, do you have the exact same issues i have with my MS? Because you went thru a process that has worked for you, does NOT mean that it will work for everyone. More importantly you should know this if you have MS. Not all MS is the same!
aint ignorance grand? I have MS and i agree with you
Maria needs to actually HAVE it first pre commenting re Drs ---
she never responded to me therefore she is full of shit
arcasticS arcasticS Maria does have MS... shes in the video at 7 minutes. Shes just trying to help.
arcasticS arcasticS Thats harsh because I did respond to you and AM full of s**t
No it's really not , it sucks!
I’m so tired of trying to explain why I don’t relate -understand people at times in stead of saying oh I understand they think I’m slow or need to be in a medical home just give me time to understand gezze it’s not easy for me it’s frustrating for me too
Mri never confirmed it while positive with Babinski and Hoffmann signs. This condition has influenced my health, my mood and if course myboerson m. Thisbisbthe worst
Mental fatigue
+fozia barak You have to remember that with mental fatigue, everything seems to work fine, until it falls apart.
Or was that "metal fatigue"
+John Cherry Isn't it the same thing? :-P
+Tanya Asbreuk As an Engineer, I'm more used to the expression 'metal fatigue', but since I was diagnosed with MS (at age 54) mental fatigue is more important to me.
Quiet Hilarious How People Respond To Stuff
All People...These Things Become Trying While They Laugh & Hurt Feelings Of Things Happening . MS is a real trying condition
I suspect that I my be suffering from MS and is waiting for an appointment with a neurologist. The physical discomfort I can tolerate at this stage. But losing R20 000 ($1, 144.97) in a year's time by leaving either my money or my bank card in the ATM, or losing purse with money and card, getting a R2000 fine for not having my drivers license on me because I lost it 2 days ago are all things that makes life so hard. I listened to the people with MS and how they describe their cognitive difficulties and mood disturbances and it sounds so familiar. I pray to God that I am wrong and dont have MS. I have so much admiration for these patient's courage and how they deal with life.
i tend forget to eat and not have the money to eat out when out and about.
😣
I think I have it . But , I do not want to know (for sure) .
Go to a neurologist and find out, Gary. There are medications that can help prevent the progress of the disease. In my opinion and experience, it's better to know so you can do something about it.
I was diagnosed with MS, but I feel like after watching this video on human behaviour "changes" due to MS, I think EVERYONE has MS. My friends and family do the same stuff.
I would like to know more about CBT therapy . I would like to know more about this therapy. I went from having lesion to not having lesion. I also stop wetting my diapers. Okay, At first I notice that sweating I was not doing, so I used cooling vest to get me to the point where I sweat. Then I also found that music therapy and art therapy was good. I also brought a cubbi to get my exercise in house. I'm excited now my exercise will be an adult tricycle. My goal is to be able to walk without assistance. I walk with two poles. This allows me to keep my balance. I'm taking my first baby steps. I find that my hearing is much better. Sounds of radio, television, and even nature sounds irritate me. But I push through these problems. I also find that looking at funny or comedy shows, also help. I find that releasing endorphins helps in releasing stress. Mostly my stress is brought on by family members. I thank for information on CBT therapy.
My First Battle W/ MS
My ex gf has ms her mood swings changed minute by minute, had to write everything down. Think it's got worse as the last 2 years since we broke she's been on and off in contact with me and used blow up for no reason nasty, blowing up at me for sleeping with other women. Emotions all over the place. Recently heard a rumour now she's suffering signs of depression. Horrible for her and to be on the receiving end. I'm away from her now, would I go back. Label me a bad guy but doubtful I would put myself into that life again.
I think stats mentioned here inaccurate or a bit outdated. People with MS can lead a healthy life with current treatment plans.
Obviously the severity by which an individual is affected by MS varies, but there’s a lot that we can do to help.
I have 6 lesion nd 4 are lit up what does it mean
I have 2 lesions on my brain and swelling blood vessels according to an MRI. I had a spinal tap and was diagnosed with MS recently. Now I am determined to learn more about it, get treated, and find out how I can successfully live with it. I'm scared, but I refuse to let it conquer me. I hope the best for you as well as strength and courage to help you get through.
Hello, I was afraid as you are when I was first diagnosed. Went through a number of medications , until one restored my walkin, paired with prayer and faith. Tysabri paired with a dose pack of salumedrol. It's an absolute miracle!!
Can anyone tell me, if someone is cured of MS yet?
I've never heard of anyone being cured, but fingers crossed🤞🏿.
there is no cure for MS as of yet. there are several pretty good *treatments* that are backed by peer-reviewed research, and some emerging research about possible preventatives like an EBV vaccine, but no cures yet.
do not believe any snake-oil salesmen peddling their diets or essential oils.
My personal research is it starts from a virus and ends up autoimmune. They need to learn how to detox viruses. Not sure it will happen since pharma likes to get paid bro!
i need a fucking cure now
My neighbor said she has arthritis n she can do soooo much...why cant i?
Should i put heavy bricks on legs n tell her walk 😂
Its no joke when u walk n have balance problems n try n do normal things that u forget what to do next😢
infrasound mind machine from Russia dr lgor Smirnov from satellite beam
causes many symptoms
Get HCST.
The sad thing is I had an MRI and the Dr still sed they didn't see anything and weren't sure WHY my legs went so numb COMPLETELY NUMB:
I lost all feeling, THAT I cudnt walk. R THEY DUMB N CALIFORNIA OR JUST ACTING DUMB TO MILK THE MEDICAL INSURANCE????....
ALSO IVE ALWAYS HAD THE PINS N NEEDLES SINCE MY 1ST PREGNANCY BACK N 1998. I HAD 5 KIDS N ALL NUMBNESS N MY HANDS & up my ARM ALTERNATING BOTH SIDES,DURING PREGNANCIES. TO THE POINT OF BANGING MY HANDS AGAINST THE WALLS CUZ IT WAS SEVERELY PAINFUL. IF ONLY ID SEEN A DR. EARLY ON. MABY ......IDK. IM SURE IT HAD ALOT TO DO WITH DEPRESSION. MY DAUGHTER COMMITED SUICIDE THIS YEAR N MAY.2 WKS LATER - MY NCS SHUT DOWN. I WAS ALSO CRYING SMOKING LOTS OF CIGS, OVER HEATING N MY GARAGE ALOT. B4 THE FINAL STRAW SO ...YES DEPRESSION & HEAT, MABY VITAMIN B DEFICIENTCY. ALONG WITH TRAGEDY. IM SURE IVE HAD IT YRS. BT THEZ LAST EVENTS TOOK ME DOWN.
SO THANK U UTUBE FOR THE INFO OF MY DIAGNOSES. BY DOCTORS ON UTUBE VIDEOS. SHEEESH.