In 1995 I was diagnosed with relapsing remitting multiple sclerosis. That was nearly 28 years ago. I am a walking talking example of the hope I want you to have. I have an active, fulfilling life and the changes have been positive. Hang in there, the shock wears off and life goes on: It's a new life but it goes on. 💜
Hey hey, myelin researcher/axonal degeneration researcher here who has been involved in many drug studies and was in startup developing a small molecule therapeutic for oligos ..... out of curiosity, which drug(s) are you using these days?
@@YvetteODowd that's awesome. Fingolimod is neuroprotective and had some cool properties in mouse model of MS... and it helps to protect axons despite myelin changes, and interestingly increased mitochondria amount in axons which maybe accounts for its neuroprotective effect on demyelinated axons.
I was diagnosed with MS in 2017 when I was 33. At first I was devastated, but it is not as bad as I expected. I'm still able to work full-time, travel and be happy. Of course I experience difficulties and fatigue, but I guess I'm used to it as it is part of my life now.
I was diagnosed in 2020 as the whole world was changing. It was a lot to handle at the time. My experience with vertigo from start to finish was 3 weeks. 1 day of room spinning and the rest was just balance problems. I haven't had it again, thank goodness. I know it's tough. I didn't tell anyone about my diagnosis (besides my husband) for over a year. Now I have infusions every 6 months and I'm free of new lesions and I actually feel really good. I try not to worry about what might happen. That'll drive anyone crazy. I get plenty of sleep, and I allow myself slow days when I need them. Also, I've learned not to say things like "it could be worse" because in the moment we are hurting. We are struggling. We arent functioning at the same capacity we used too (even if just temporarily) and its ok to recognize that we're not doing well in the moment. Yes, it could be worse but in that moment it's the worst we've likely ever experienced. When I had optic neuritis That was scary and didn't want to discuss how scary it was just because others might have it worse than me. 😊 I hope you start to feel better. 🙏 Praying you'll get stronger. Living with MS can be manageable
I was Dx’d w/ M.S. 35 yrs ago 1987 I was 27 ,I am now 63. I too am a walking talking example of hope I also want you to have. I have 4 grown children and 7 grandchildren. I have an active life and the changes I’ve made are positive. Just moving a couch , taking a walk , sweeping/ vacuuming, takes a lot out of me, rest when you can. If you need to talk I am here. Be strong warrior! MS💪
Thank you for making this video. Because of my MS & cognitive changes, I've been forced into a medical retirement. It's been almost 4 years. I'm loving it now, but my self esteem took a huge hit when it happened.
In case it gives anyone hope, REMYELINATION *CAN* HAPPEN, and lesions sometimes completely disappear. New or old lesions can also be asymptomatic. The unpredictability of autoimmune disease is often the worst part for me, but it's also a blessing when things get *better* : - ). Sharing stories like this helps. Thank you and good wishes! ❤
My heart goes out to you. So sensitive and articulate. My life took a sudden turn with a cancer diagnosis so fatigue is now part of life, aches and pains. I’m hopeful of a good recovery and know life won’t be the same, never as carefree and sometimes feels lonely but I choose to walk in the metaphorical sunshine. Attitude is yours to deploy as you wish. Sending my love and best wishes xx
As much as I hate having MS, I am heartbroken when I see it attack the young.I know it seems a bit trite but, I have found that Doing and seeking the things that make you laugh, really does help a lot. Hang in there young lady ,you seem well grounded and show great promise.😀
Please stop with this disrespectful shit of valuing younger people's lives over older people's lives. No wonder old people are not respected in western societies when more empathy is routinely given to the young. I have MS but I have worked in neuro rehab in the past and see the impact MS can have on people across all ages. Some challenges the same, some different but all challenged in some profound way. All lives matter equally.
I don't value the young any more than anyone else. I just know that this damned disease does not kill you by itself. Having it strike me down in my fifties and eat me up for ten years it simply pains me that getting this hell when you are young only gives more years of pain. Hence my comment.
@@mybachhertzbaud3074 Okay, I see, thanks for explaining. Indeed the younger you are the more years of MS crap one has to deal with. All the best to you.
I’m now 70 & was diagnosed with RR MS at age 35 in 1988. I now have secondary progressive but still walk up & down my block as well as around the house. Also ride a stationary bike. Thank you for sharing your diagnosis and your reaction to it. I’m not very religious, but I really believe that on your site you are a blessing to other people who have any association at all with MS. Btw, I describe MS and it’s lesions on the central nervous system to obstacles/scars on railroad tracks that stop the train or messages from the brain to one’s extremities. Everything you say about MS, I have also felt and feel now. You are very normal. Please remember to not isolate yourself, do whatever you want/need to do and get a neurologist who is up to date and who listens to you. Bring someone with you to your medical appointments to have a second pair of eyes/ears. Use the MS Society for information, maybe join a support group (your husband, friends and other family can come too). With Love & Support, Nancy in California Think about all possible MS medications (I use Ocrevus). Contact the manufacturers of any medications to get assistance in paying for it.
I was diagnosed with Multiple Sclerosis in 2012. It was hard after 5 years of my diagnosis I has to quit my job and be place on total disability at 45. I’ve had my highs and lows but I just tried to push through. Just know their are other people out there that understand what your going through.
I survived breast cancer 7 years ago, at 33 years old, and I completely relate to the feeling you were describing about how much to share. When being completely honest I felt like it was too much for people, but just pretending everything was fine also didn’t help the situation. Quite honestly, you might lose people in your life who really can’t handle hard things. There is a lot of toxic positivity out there, and it can feel very invalidating. For myself, there were some tough lessons in there about recognizing that most people are doing their best, and that they have their own stuff going on. It helps tremendously when everyone can just be honest with each other about feelings, personal limits, etc while still showing each other care and compassion. Sending you love as you navigate your future, I know this won’t be easy but I can see that you are already have such wise perspective. Thank you for your vulnerability in sharing.
I never leave comments here on RUclips , but you truly are a slice of light. Sending thoughts and prayers to you going forward and please remember what you are saying here - you truly are not alone.
My sister who lives with MS for the last 16 years started with this mental frame and similar symptoms, so I totally get you. However, the good news is that she leads the best possible quality life after figuring out, taking help, rearranging, and prioritizing all the things that work for her and creating that ecosystem. Her journey is incredible and she is one of the bravest people I know. And of course, she is on oral medication which has really kept her condition well under control . There's plenty of hope, sis. Please join the MS online communities and you will learn so much which can improve your life quality.
I believe you apologized for being negative or something of that nature. The truth is not negative! It's just truth. And you are a brave woman to step forward and share this. I have utmost respect for you!
As you were telling your story and I knew that there was a very good chance you were going to say MS. I have had MS for about 17 years now, I was diagnosed in my early 20's. My first symptoms were the tingly/numb feeling that engulfed my entire body. When I was finally diagnosed I went to tell a very good friend with a huge smile. He said why are you so happy about this? My comment was now I know what I have and this will not kill me. I am always proud to tell my story as you should too. I know MS takes many forms and not knowing how this will react with you, but I hope that you will be able to do anything that you can imagine in life. I have been on the injection Avonex, and even 17 years later, there are still weeks I do not want to stick that dumb needle in me, but I know that it is helping, and I can do this about anywhere. Last week we were camping and I was actually just telling my husband that we can do all these fun things and my MS and injection does not stop it. I am fortunate that I have very little problems with my MS and I am able to do all the outdoor activities I like. Hiking, camping, fishing, snowmobiling, just to name a few. I do get fatigued easier and the heat is a killer, but I push myself as much as I can. Just do not stop your life, keep moving and stay healthy. MS does not own you!! I am sure this is scary for you and pray God has a healing hand over you. Thank you for sharing and keep sharing!
I'm still waiting on my formal diagnosis but my GPs are very convinced as was AE (just waiting on neurology) Like you I started with weird tingles - unfortunately I don't really have much control of my right leg so I alternate between wheelchair on bad days and crutch on good days (but hey at least I'm still mobile in a sense haha) I'm actually really excited to get my diagnosis! My GP rushed me to AE because it's been quite a rapid process so they were worried I'd buggered my spine some how - it will be really nice to have the confirmation that it will be life changing, not life threatening. Lastly I'm so glad to see some people have taken really well to the medication - it gives me hope for the future (no cure, but delaying the progression is better than nothing! 😊) Best wishes to you all xxxx
Thank you for sharing this. I was diagnosed in 2020. It was a very scary and challenging time. Very isolating and hard because as you say it makes you feel like you are complaining all the time Tell your story. We all need to hear it. It is the only way that people will start acknowledging it and we are so close to finding a cure.
I know this video is old but I hope you see this. Having an Invisible Illness is so difficult, especially as a younger person. People look at you and, as you said, you “look fine”. And, being young, what could possibly be wrong? I was about your age when I started my invisible illness journey and it is still difficult 17 years later. People who don’t live with it just don’t get it, and can be very mean. So glad you have a good support system, it makes a big difference. Sending you gentle hugs and all of the good vibes I possibly can!❤
Finding this in 2024. I’m surprised I have not found you sooner as I love watching all about minimalism and baby things. Currently going through a diagnosis stage but relate to a lot of this. I look forward to watching more of your videos. Thanks for sharing ❤
hi, i have Fibromyalgia and i also have most of the symptoms you speak about, it really has totally changed who i am. I am becoming gradually accustomed to living a very different life.
New follower. Just found you today! I was just letting RUclips play but when I heard you say MRI and lesions I knew where going. Today is my 34th birthday and I have now been diagnosed with MS for as long as I didn't know what MS even was lol! I don't know if you'll ever see this but if you want to talk about treatments or anything I'm willing to talk! Keep your chin up ❤
I have been living with Sjogren's Syndrome since I was 19. That's over 40 years. The symptoms can mimic MS, including migraines and trigeminal neuralgia. It's a part of my life. I make my decisions around it because I have to. Treating a chronic illness like a routine part of my life is only honest. It's a large part of why I am pursuing minimalism. Good for you for treating your illness openly. It's life with an autoimmune disease. Best to you.
My dear, you are worrying too much about people. You are doing amazing! May God Bless your heart and soul with peace and health! I will be praying for you. If you lived near me, we would have lunch ❤️😊
Oh honey, I’m so sorry 😢💔 I hope you have a mild journey, and that you can still have the life you want ❤ I’ve had similar experiences in hospitals and that can be so traumatizing 😢 These invisible issues are so hard for the people in our lives to understand. I think it’s not just judgement or that they don’t belive you but also hoping and wishing for you to be able to do things 😟 It’s so hard for people that don’t have difficulties to relate to those difficulties. I think it’s valuable talking about this on your channel, not just so that we understand your situation but there are actually many people out here with similar difficulties (CFS/ME and other chronic issues) who will relate to the importance of your channels content for those of us with difficulties too. Not all of us can have active lives and yet or because of that minimizing our lives becomes even another level of important ❤
I have a different autoimmune disease, autoimmune arthritis, and was diagnosed 8 years ago at 23, but my symptoms started in my teens. I’m almost 31 now and having a big flare lately. It hurts to walk or stand up or bend over, hurts soo much. I do feel alone, my family didn’t seem to believe me or really care when I was going through diagnosis years ago. Invisible illness is lonely. But I have a lot of empathy for those who are going through it. You never know what someone is going through.
I know what you mean about 'burdening' others with talk of pain and discomfort and not feeling well. I, too, feel that others don't understand because I look 'fine', and I don't feel well nearly every day. Having a group of people going through the same thing helps.. Thank you for sharing.
Thanks for posting this. The section about worrying about complaining and the isolation in that really hit home. Our early symptoms are different but so much of this is inline with my experience and it’s so reassuring to hear someone else talking about this.
Thanks for sharing your story 💕 I don’t have MS, but as someone with an invisible chronic condition it’s nice to feel less alone. Wishing you the best!
Oh Elin…. I just found your channel a few weeks ago and I just want to let you know that my heart goes out to you. A very close family member was diagnosed with MS and you’re right. Your entire personal world changes. I wish you nothing but the best, young lady. And I’ll keep on following your channel and journey. Big virtual mom hug. ❤️
Oh hugs hon! I live with chronic illness and fatigue that goes with. It’s why I’m a minimalist and why I keep life simple! I’m in control, not my illness. You’re in good company- Courtney Carver started her minimalist journey when she was diagnosed with MS in 2006. It’s part of how she started project 333. She simplified her entire life. The “you seem fine” is really difficult! That’s NOT in your imagination! It’s very real! I got to where I am extremely careful who I share details with - I just say it is a couple of autoimmune diseases and I have serious weakness and fatigue. I am so done with the well meant advice - the magic cures that people want me to try - that I have tried and didn’t work. Grieving normal takes time. You didn’t express negativity- you sound like all of us navigating long term chronic illness that aren’t fixable but can be lived with successfully. ❤️🤗
I live with cronic fatigue syndrom and, oh God, I understand you so much! I am constantly fighting inside me between telling people about it so I can educate them or hiding it from everyone and save me time and efforts 🤦♀️ I am studying psychology and when I had to learn about psychosomatic disorders I was so triggered I couldn't open the book, because of all the times I've heard and still hear that "everything is in my head". I actually have to learn in my psychology books about how sfc is psychosomatic! I love psychology with all my heart but sometimes I hate it so much for this kind of irresponsible statements. I hope things will change with time! ❤️
@@unrespiro thanks for sharing you're insights. I've had chronic fatigue for 15 years since college in NYC. For me personally, I don't doubt that there are "some" psychosomatic components of chronic fatigue syndrome. But of course there are some very real and traceable physical components too. I got food poisoning which set off a chain reaction of problems plus the extreme pressure and stress from a toxic relationship, to do well in college by my mom and the worry and insomnia brought on by my toxic dorm environment. And the pressure I put on myself too. I read that there was a research study correlating food poisoning with chronic fatigue several years ago. I don't remember any of the sources but please look that up in might help you in you journey for answers.
I was so rocked by your part about feeling doubted because you can mask your symptoms well. You feel like you can't win either way and it leaves you isolated in your own reality shouldering it all while others kinda get a blissful ignorance about it. It's not easy to talk about health issues without feeling like a downer or making things awkward but I'm so glad you talked about it so openly. I think a lot of viewers may resonate for one issue or another. Thank you
Hope your healthcare providers are getting you in touch with support groups. I know you know the importance of the emotional aspects of a health diagnosis like MS because of your education but it is hard to think of ourselves as our client :) The MS Society may have resources for you...
I am facing something that is potentially very serious. Health related. I have not told anyone. Mainly because my grandson is getting married soon an I don't want anyone focused on anything bad. Just be happy for these kids. As soon as they finish their honeymoon, I will go to the doctor. I know it will lead to surgery to remove cancer. Thank you for ur story an ur bravery. Praying for you love.
My name is Kelli . Thank You for telling us your journey as difficult as it may have been. I have MS as well. I understand everything you said and how you feel. It is very lonely. Many prayers and hugs coming your way. Try to stay positive and keep a good sense of humor its the best way to manage this disease.
REmyalination also happens! The body heals itself! You are living in a super powerful body which will try to keep itself functioning all of the time! If 1% of your body is malfunctioning and attacking the myelin, then 99% is trying to fix the problem! That's why all the symptoms are so unpredictable and come and then disappear again! Your body is busy healing!
I was diagnosed w M.S., I believe in 96, 20 years old I was diagnosed RA, I have chronic Lyme’s! I absolutely have been on roller coaster rides w/ it all, I’m still walking, I’m so more prone to catching a lot however, we’re all careful. I even have watched all my 6 grandkids since they were tiny! It’s all a blessing, each day! One thing I still work on, always, know when you’re wearing down, it can cause so much complicated situations, even mental more than normal. Much love, best in all you can find to help your own bodies system, I deeply wish you and all the greatest.
I want to thank you for sharing. I am turning 59 this month, I have a son with special needs, 35, my daughter, now 30. I was in car accident just 7 months pregnant, towards end of pregnancy, led to bed rest until her lungs developed. My eye doctor 23 years ago told me i had MS, so I had another MRI. I have been thru a lifetime of medical issues, starting in my 20"s. I have not officially been told of MS being part of me, but the MRI and the medical explanation, on one report is positive, next time negative, we don't care when what it is, we want to fix it. My experiences are similar, but listening to you today, it is the first time a person spoke, possibly explanation of why for over 30 years that I have systems, liaisons in the brain and spine,. My family and friends, are few and far between, because it is hard to be around me, they don't know why weight loss, they believe basically crazy and looking for attention. People can be cruel, my experience with my son. You have inspired me to keep fighting, and your honestly going to inspire allot of people. Hope your day is a good one..
God bless you! You remind me of my daughter who struggles with a chronic illness and is learning to live her own best life on her own terms. "Invisible" illnesses can really highlight a lack of understanding and even compassion on the part of others. I'm glad to hear you have a loving husband and family by your side. Thank you for sharing your story.
Medical advancements are discovering ways to hopefully halt the progression of many of these types of diseases. My daughter has CMT and at her neurological hospital appointment last week we heard about many studies and trials continually taking place all around the world to bring a stop to these conditions advancing. 🙏
Your video came up in my feed and I thought “this young woman is even lovelier than I last saw her”…and I watched. What a story of courage and hope! I almost didn’t comment because I thought why would you care about a comment from a random woman in TN. But actually I’m not random. It is no coincidence that I saw your story and I will pray for you and I hope you will continue to share your journey. You have a platform to spread beauty and hope. We all need both so much!
I can empathize with your circumstances, especially when you share the difficulties you experience from day to day as you manage your MS symptoms. When I wake up in the morning I look around me to decide the kind of day I'm going to have; whether I'm going to suffer from “cog fog” or if I will be able to walk w/o pain. I also understand the difficulties you have in feeling sociable with friends and family members. Nothing is easy any longer but maintaining a positive attitude from one day to the next will help you cope well with the life you have ahead of you. I'm a 74-year-old who has learned to manage each day by surrounding myself with friends and family members who care for me and understand my circumstances. You are going to do well 💕.
I just wanted to say that I am so sorry about your diagnosis and pain. I also have an autoimmune condition so I know how isolating and scary they can be. I hope that you are able to find relief and good dr's to help you navigate this part of your life. May you be at ease in your body, mind, and heart.
Thank you for sharing this. What a difficult journey you’ve been on. Please give yourself a lot of grace as you navigate this new life, because what you’re going through is very hard. Wishing you the very best.
I am a recent follower and I appreciate your kindness in sharing your story. I am a 62 year old wife and mother of 2 with MS. I was diagnosed in 1992 at age 32 a few months after the birth of my first child. It took months to diagnose especially then. I had all the many related and unrelated tests they could think of. So worried it was a stroke or cancer or anything that I was tested for. When I finally was diagnosed with MS I took it kind of well. I knew what I had and could research what to do to help. The unknown was just too much. I had an old school neurologist that helped me medically but suggested no children and I had to follow my life plan even without out that support. I am very blessed that I have never had pain with my MS (I am a pain but have no pain😉) Over these 30 years I certainly have declined in my energy levels and walking. My husband reminds me I have a limited amount of energy each day and I should try to do those things most important to me. I often feel worse for my husband as he didn’t sign up for this but thankfully abides with for better or worse attitude ! It is natural to be cautious about the future as none of us know how our health will be or what these strong meds will do to our bodies. Telling family and friends was hard. So worried about being pitied or treated differently but that never happened. There are always people better than you or worse. As I say, Everyone has something, this is just the little “perk” God gave to me💗We just take each day as a gift and try to be a light to others💐 Please feel free to reach out privately if you wish. Love and prayers, Cathy Gunn
Thank you so much for sharing your story. I was just diagnosed in September of 2022, still learning so much about it. Also, still trying to learn, understand and accept my limitations. While very scary to learn the diagnosis it was also a relief in a way to learn that there is an explanation for so many symptoms that I've been struggling with for years.
Hi Elon: Great video:) Our invisible disease. Glad you are on good treatment. All these symptoms are familiar. The future is for sure scary. We are fortunate to have an explosion of research in MS in our near future. I was diagnosed 1 year ago on Kesimpta doing well. Be kind yourself & stay strong mentally & physically as much as you can. We carry foward 🙋♀️ Love from Colo Fatigue & brain fog is real.
Oh wow Elin. My mom has episodic ms is 89 and so much has changed with diagnosis and treatment in her lifetime. She still talks about that spinal tap 70 years later. She took her nutritional health and supplements in her control to feed her nerves and manage her stress and except for flares has had what she calls a normal life. Career pregnancies physical activity the works but had to respect her need for rest. Where I live is world hotspot of ms you are just south of us. I have had vertigo for a year it was starting to settle then I got a cancer diagnosis. Social support system has been huge. I’m in remission now from cancer will eventually have to figure out the vertigo ( I just restricted my life to function ). I used to invite people I met with new diagnoses of ms to meet my mom because she’s so positive and has learned to adapt to the challenges. I’ve been able to remain working as a therapist mostly right through it all by working virtually but virtual work and vertigo takes a lot of lying down between sessions. I have to take way more notes in sessions to focus and track now and you will find your limits and process as you go. I’m older 62, it’s just so unfair at any age but especially young. I’m reaching out if you want to connect.
You were brave and kind enough to come here and tell everybody what it is like and how it feels like. I hope you stay firm and sincere to yourself first every single new morning. I bet we all wish you healing vibes to cope with it all along the journey. ♡
I was diagnosed in May 2021 and also got a terrible spinal headache and thankfully relief with the blood patch. I own a photography business and am hesitant to share about it online thinking future clients won't book me because of it or it will put doubt in my current clients minds. All my close family and friends know and my even my part-time job, but sharing online is an entirely different level. My MS symptoms are different, but I can really relate to what you are saying. My cousin has Lyme's disease and talking with her during the beginning of my diagnosis was really helpful in many ways. The older I get the more I realize you can understand something but not really get it unless you experience it yourself. Thank you for being brave and sharing your story. It's a big deal.
I also have MS, but I have learned from the outset, to keep thinking posiitive no matter what you are told. Always remember, if you think positive your life will be positive.
Omg thank you for this ❤.. my son is your age and his life was changed this weekend after getting 2 MRI’s , spinal tap and a phone call telling him about a lesion on his brain. He was immediately given a prescription for prednisone and was told the MS society will be in contact with him. What a shock to say the least but you have helped me understand a little bit more . Thank you and I am sending prayers to you and your family .
Thank you for finding strenght to share. I HATE when people think one complains just to get attention. Why is there such a bias that if you look fine you ARE fine. These people have never been not well. You don't necessarily look bad when you feel awful. You are strong and please stay that way. I find what helps is not to concentrate on your symptoms. It is new you, this is how you process the world now, the best is to embrace it. Sending love ❤️
Oh my goodness....I'm so sorry 🙁 2 bits of advice....read The Wahls Protocol and look into articles and videos by Terry Wahls. Also, Courtney Carver from Be More With Less was diagnosed with MS a while back. You are so right...every persons journey is different but you may find bits and pieces from each of these resources that will directly relate to you or that you can find inspiration in. I have Crohn's disease and the situation in similar in that each person is helped by different things....what works for me won't necessarily work for others. However, we can all come together as people with autoImmune disease and help each other. Please know I am thinking of you and sending you tons of healing thoughts and love ❤
I was diagnosed with CHF in 2018. I remember going through similar stages of emotions. My first thought was that I was going to die too. I was terrified until I understood more about my disease. Through diet and exercise and medication my heart has healed substantially. I pray that you will find strength and support in our RUclips community. 💝
Sending my love and support! My mom was diagnosed with MS in 1987 when she was about 50. She had spent 15 years trying to get answers to her miscellaneous symptoms. She was treated like a stupid hypochondriac woman by so many doctors. That was very hard on her self-esteem! She had a slow progressing form of the disease, so that is probably why she didn’t get diagnosed earlier. Here are a few things that she realized: -She couldn’t have 2 busy days in a row. That would set off a bad couple of weeks. As she got to be in her 70’s and 80’s, she would only do one or two things a week. We would combine trips to a doctor visit with lunch (we would sit in the car to eat), a pharmacy pick-up and sometimes a quick trip to the grocery store. That would be about 3 hours and more than enough time out. She stopped going to clubs and church in her last 5 years, but that wasn’t because if MS, but more from depression and elderliness. -She needed to avoid getting too hot so she would carry ice water with her at all times and stay in the shade. She sold her black car with a black interior and bought a white car with a tan interior. -If she did light exercise every day, that helped her emotionally and physically. -If people were doubters, she felt sorry for them. She tried to learn from their faux pas and be more empathetic when others had difficulties. By coming forward and talking about this, you will be helping so many people! There are viewers that are having symptoms, or have people in their lives who have symptoms and have no clue that they need to get checked! And those that are already diagnosed need support and can offer support! Bless you and I hope you continue to be open about your journey!
Bless your mom. I felt like I was reading my life story. Unfortunately doctors still seem to think women are depressed or hysterical if we aren’t 100% pleasing at all times. I’ve learned over many years that I know what I can do and I don’t apologize for speaking up when something doesn’t work or people won’t listen. I , too, look fine and smile through the challenges but it is definitely exhausting. I’m glad your mom has your support.
I could be your mother; you described my life exactly! But my diagnosis is psoariatic arthritis, another autoimmune disease. I have multiple lesions in my brain and MS was ruled out early on because they remained unchanged on periodic MRIs. God bless the MS doctor who stood by me and referred me to other specialists to determine exactly what autoimmune disease I have. When PsA was confirmed, he said it apparently had caused inflammation in my brain at some point, causing the lesions. Three years later and he still keeps me as a patient because the symptoms of MS and my PsA are similar. I also am counseled by mental health at the MS clinic for my chronic depression and anxiety. I'm primarily followed by a rheumatologist, however. You and your mom might get a kick out of the "chronic illness humor" Instagram account. Laughter is the best medicine! I'm 67 and so far am able to navigate through this alone but in slow motion.
I just discovered your channel and then found this touching video. You explain the struggle so well... I am currently in chemotherapy and the fatigue is so overwhelming. I look perfectly fine and fit though so I feel like no one really gets it. And I'm not just tired; it's profound, deep fatigue... just doing simple tasks becomes this overwhelming challenge. I don't want to seem lazy or complain too much, but I'm also incredibly frustrated by my limitations and feel like no one could understand, especially because I look fine. Anyway, your video found me at a really relevant time in my life. Thank you for posting something so honest. Btw, I personally find channels where the RUclipsr has this idyllic, perfect life annoying and depressing. This channel feels real. So thank you for that.
Even though it can be terribly difficult to tell our stories, it can also help more people than you would think. I’m a sharer….it’s just my nature but I’ve found so many people with similar conditions and stories that it’s been so therapeutic and healing for myself and others. I guess our biggest fear is being judged and thinking that others won’t see us the same anymore. What they really do see is a very authentic person who is brave and courageous in so many ways.❤️🙏
Very similar story here. My two nurse sisters were the least supportive-the other two and my parents were great. I did Immediate dietary protocols-no dairy or gluten. The MS Diet from the UK, Paleo-specifically MS research work of DR Cordain. He even has a CD of his lecture that is very good…and of course, everyone is aware of The Wahls protocol. We need sunshine (vit D) more so than most. I went hardcore and felt some relief within 3 weeks. While living in New Zealand, I did an MS stretch class and found physical therapy through that class. Important to move, but very slow pace! We Americans always want to push and go fast. Important to meditate to let your system slow down to heal. Your fatigue will be the last to go, but it will! The pain and other symptoms will resolve first, which is a good thing. My pain disappeared first, other symptoms and cognition improved greatly…and finally the fatigue left-but it will come back if diet isn’t adhered to or you’re under stress. There is most certainly HOPE!!! Maybe you could host a zoom call for those of us on this journey. Sending many hugs!! 🤗🤗
I'm coming to a place where MS looks like it could very well be my diagnosis. Dealing with and getting to this has taken its toll on me. I had to stop this video twice because it was just too similar to my story. I suffered a seizure in May and have been steadily declining for a few years up to and including now. It's horrible and I am scared. I've given up so much already, I'm afraid of what the future will take away from me. Thank you for this video none the less because even with all my issues, it's enlightening to see you handling this with grace and honesty. I wish you nothing but a long healthy life!
How brave of you to tell your story and in such an eloquent way. My MS story is very similar to yours, with similar symptoms and lesions in the same places. If my house was in order and clean, I’d be almost be inclined to say we are kindred spirits 😊
Hey, my house is messy sometimes :) sending you all the good vibes. I’m sorry for whatever you’re going through with symptoms right now, and thanks for sharing. Feeling less alone in this moment :)
I am so glad you are sharing your story. When I was young, people didn't talk about many illnesses that they discuss now. Be good to yourself, you deserve it. Tina, Al's wife
At 31 I was diagnosed with RA. A year leading up to it I felt achy and feverish for a year. There were days I could hardly walk. I was scared to go to the dr. I literally homeschooled my children from bed many days. When I got the diagnosis I wept alone as well. Granted, treatments had come so far, but the worst scenarios easily come to mind. And the meds carry heavy duty side effects, including heart disease and lymphoma. So researching meds and treatments and what's covered can be frustrating. Now at 44, I am glad I found a lesser dangerous med, have lost 110lb, and I'm doing well with minimal flare ups. It may seem less significant than an MS diagnosis, but I can relate, as do so many others. And I totally get not wanting to be the Debbie Downer. That's the hardest part. When you want to cry, or scream, or vent, or even ask for help, but feel you can't. I have found much comfort in my faith. When you find there's no where else to look, look up.
Thanks for sharing was diagnosed with RA at 46 I am on some heavy med but thankful for them. I started having nodules, hard to walk. Well I also need to lose some weight for my heart and RA. Can you please share how you lost your weight?
As someone who has lived with symptoms of relapse-remitting MS for years, I just want to validate that RA does NOT seem "less significant than an MS diagnosis" to me! If anything, to me RA seems way worse, but I know autoimmune disease manifests differently for everyone. We are all in the same club, though. < : - ) Hugs and good wishes to both of you!
Ooh Elin I just wished I could give you a big hug 🤗. I shed a few tears listening to you but do know that I will keep you constantly in my prayers. You are a beautiful and exemplary young lady and I’m so happy that your family and friends support you. Lots of love ❤️
I am praying for you... you are brave and strong for sharing this.. take rest when you have to.. no pressure in terms of vlogs or anything from us, your community... May you be well soon in JESUS name..
I was beyond saddened to hear of your diagnosis, Elin. I am sending you so much love, healing and blessings. You are such a beautiful soul. Just be very gentle with yourself and take each day as it comes. I am truly glad that you have such loving support in your life: your husband, your family and your friends.
Girl, you’re gonna be okay! I work in the PAD prior auth department for state of CA (infusions/ Chemo/ hematology). There are soooo many options to help you and as you learn more, it’s gonna get easier to know how to help your body. Eat healthy, stay hydrated, get good rest. I’ll be cheering you on!!!
Hi, I want to reach out to someone like you to point me in right direction. I’m in PA with lyme, ME, etc. I have not been able to get immunotherapy infusions to help me. What should I do?
I’m so sorry this is happening to you. I hope you are able to find a support group for emotional support. Hopefully your symptoms will subside and you can find a protocol that works well for you.
I am experiencing many many symptoms of MS. Its pretty scary! My doctor has ordered an MRI so now I'm waiting for a call to book the MRI and see my results. The waiting for me is really hard because its scary not having answers and not know what to do to help my symptoms. Thank you for sharing your story because i related to a lot of the things you have talked about.
Thank you for posting this. You made me feel so much less alone. This video found me at the right time. I lost a position as a retail manager in 2020 because this happened to me. I love your videos. Thanks for being here. 🙂
hi i can relate, having spinal arthritis, and fibromyalga, its tiring and you feel alone, but there are others out there that understand, and people close to us, sending love and healing vibes x
I'm so sorry you have to deal with all this. Nothing is more important than your health. I hope you quickly find your new normal and get all the help you need. You are so strong for sharing this. I hope it brings you more support. Thinking about you and wishing you all the best.
So sorry to hear about your struggles. Wishing for you long periods of remission, better luck with the medical red tape, and especially a cure discovered.
Last year I was diagnosed with MS and it completely changed my life. But I stayed positive and read books, believed God. And always said to myself that now I have to live with it. I always do strengthening exercises. So now I have improved my walking and somehow able to fight with it.
If you don't follow Courtney Carver, she is also an influencer who became interested in simplifying her life after an MS diagnosis. I enjoy her writings/YT channel and the podcast, if you haven't been following her I highly recommend it. All the best to you with this challenge and thanks for sharing, I'm sure it will help others.
I never comment on RUclips videos but wanted to take the time to thank you for sharing your story. I absolutely love all your videos, and appreciate you being vulnerable with this community. Sending you love and support. 💗
My heart goes out to you. The health care system can really be horrid. I hope you feel better for telling us. MS is so weird. My daughter has it too. Be good to you all the time. I believe in you.
Thank you for sharing your story. It hit me on many levels. I too,have a chronic illness that I fight each day,but please know that life can still be very beautiful and worth.living. God bless you and your family,it’s really gonna be okay.
What a blessing that you now have found a life path that is satisfying. I’ve only seen a few of your videos but you seem like such a level-headed and self sufficient person. God bless you and your family. ❤🙏🏻
I was diagnosed with Lupus in 2019, and one of the worst things you can say to someone battling an invisible disease is "You don't look sick".
In 1995 I was diagnosed with relapsing remitting multiple sclerosis. That was nearly 28 years ago. I am a walking talking example of the hope I want you to have. I have an active, fulfilling life and the changes have been positive. Hang in there, the shock wears off and life goes on: It's a new life but it goes on. 💜
Hey hey, myelin researcher/axonal degeneration researcher here who has been involved in many drug studies and was in startup developing a small molecule therapeutic for oligos ..... out of curiosity, which drug(s) are you using these days?
@@puddlesplasher7 I am on Gilenya. I live in Australia
@@YvetteODowd me too.
@@YvetteODowd that's awesome. Fingolimod is neuroprotective and had some cool properties in mouse model of MS... and it helps to protect axons despite myelin changes, and interestingly increased mitochondria amount in axons which maybe accounts for its neuroprotective effect on demyelinated axons.
@@puddlesplasher7 Leave mice alone it's not their problem.
I was diagnosed with MS in 2017 when I was 33. At first I was devastated, but it is not as bad as I expected. I'm still able to work full-time, travel and be happy. Of course I experience difficulties and fatigue, but I guess I'm used to it as it is part of my life now.
I was diagnosed in 2020 as the whole world was changing. It was a lot to handle at the time. My experience with vertigo from start to finish was 3 weeks. 1 day of room spinning and the rest was just balance problems. I haven't had it again, thank goodness. I know it's tough. I didn't tell anyone about my diagnosis (besides my husband) for over a year. Now I have infusions every 6 months and I'm free of new lesions and I actually feel really good. I try not to worry about what might happen. That'll drive anyone crazy. I get plenty of sleep, and I allow myself slow days when I need them. Also, I've learned not to say things like "it could be worse" because in the moment we are hurting. We are struggling. We arent functioning at the same capacity we used too (even if just temporarily) and its ok to recognize that we're not doing well in the moment. Yes, it could be worse but in that moment it's the worst we've likely ever experienced. When I had optic neuritis That was scary and didn't want to discuss how scary it was just because others might have it worse than me. 😊 I hope you start to feel better. 🙏 Praying you'll get stronger. Living with MS can be manageable
I was Dx’d w/ M.S. 35 yrs ago 1987 I was 27 ,I am now 63.
I too am a walking talking example of hope I also want you to have. I have 4 grown children and 7 grandchildren. I have an active life and the changes I’ve made are positive. Just moving a couch , taking a walk , sweeping/ vacuuming, takes a lot out of me, rest when you can. If you need to talk I am here. Be strong warrior! MS💪
Thank you for making this video. Because of my MS & cognitive changes, I've been forced into a medical retirement. It's been almost 4 years. I'm loving it now, but my self esteem took a huge hit when it happened.
In case it gives anyone hope, REMYELINATION *CAN* HAPPEN, and lesions sometimes completely disappear. New or old lesions can also be asymptomatic. The unpredictability of autoimmune disease is often the worst part for me, but it's also a blessing when things get *better* : - ). Sharing stories like this helps. Thank you and good wishes! ❤
My heart goes out to you. So sensitive and articulate. My life took a sudden turn with a cancer diagnosis so fatigue is now part of life, aches and pains. I’m hopeful of a good recovery and know life won’t be the same, never as carefree and sometimes feels lonely but I choose to walk in the metaphorical sunshine. Attitude is yours to deploy as you wish. Sending my love and best wishes xx
As much as I hate having MS, I am heartbroken when I see it attack the young.I know it seems a bit trite but, I have found that Doing and seeking the things that make you laugh, really does help a lot. Hang in there young lady ,you seem well grounded and show great promise.😀
Please stop with this disrespectful shit of valuing younger people's lives over older people's lives. No wonder old people are not respected in western societies when more empathy is routinely given to the young. I have MS but I have worked in neuro rehab in the past and see the impact MS can have on people across all ages. Some challenges the same, some different but all challenged in some profound way. All lives matter equally.
I don't value the young any more than anyone else. I just know that this damned disease does not kill you by itself. Having it strike me down in my fifties and eat me up for ten years it simply pains me that getting this hell when you are young only gives more years of pain. Hence my comment.
@@mybachhertzbaud3074 Okay, I see, thanks for explaining. Indeed the younger you are the more years of MS crap one has to deal with. All the best to you.
I’m now 70 & was diagnosed with RR MS at age 35 in 1988. I now have secondary progressive but still walk up & down my block as well as around the house. Also ride a stationary bike.
Thank you for sharing your diagnosis and your reaction to it. I’m not very religious, but I really believe that on your site you are a blessing to other people who have any association at all with MS. Btw, I describe MS and it’s lesions on the central nervous system to obstacles/scars on railroad tracks that stop the train or messages from the brain to one’s extremities.
Everything you say about MS, I have also felt and feel now. You are very normal. Please remember to not isolate yourself, do whatever you want/need to do and get a neurologist who is up to date and who listens to you. Bring someone with you to your medical appointments to have a second pair of eyes/ears. Use the MS Society for information, maybe join a support group (your husband, friends and other family can come too). With Love & Support,
Nancy in California
Think about all possible MS medications (I use Ocrevus). Contact the manufacturers of any medications to get assistance in paying for it.
I was diagnosed with Multiple Sclerosis in 2012. It was hard after 5 years of my diagnosis I has to quit my job and be place on total disability at 45. I’ve had my highs and lows but I just tried to push through. Just know their are other people out there that understand what your going through.
I survived breast cancer 7 years ago, at 33 years old, and I completely relate to the feeling you were describing about how much to share. When being completely honest I felt like it was too much for people, but just pretending everything was fine also didn’t help the situation. Quite honestly, you might lose people in your life who really can’t handle hard things. There is a lot of toxic positivity out there, and it can feel very invalidating. For myself, there were some tough lessons in there about recognizing that most people are doing their best, and that they have their own stuff going on. It helps tremendously when everyone can just be honest with each other about feelings, personal limits, etc while still showing each other care and compassion. Sending you love as you navigate your future, I know this won’t be easy but I can see that you are already have such wise perspective. Thank you for your vulnerability in sharing.
I never leave comments here on RUclips , but you truly are a slice of light. Sending thoughts and prayers to you going forward and please remember what you are saying here - you truly are not alone.
My sister who lives with MS for the last 16 years started with this mental frame and similar symptoms, so I totally get you. However, the good news is that she leads the best possible quality life after figuring out, taking help, rearranging, and prioritizing all the things that work for her and creating that ecosystem. Her journey is incredible and she is one of the bravest people I know. And of course, she is on oral medication which has really kept her condition well under control . There's plenty of hope, sis. Please join the MS online communities and you will learn so much which can improve your life quality.
I believe you apologized for being negative or something of that nature. The truth is not negative! It's just truth. And you are a brave woman to step forward and share this. I have utmost respect for you!
Dr Joe Dispenza has magnificent meditations in RUclips and in his website. Lots of people have reactions to spinal taps… why do they lie??
As you were telling your story and I knew that there was a very good chance you were going to say MS. I have had MS for about 17 years now, I was diagnosed in my early 20's. My first symptoms were the tingly/numb feeling that engulfed my entire body. When I was finally diagnosed I went to tell a very good friend with a huge smile. He said why are you so happy about this? My comment was now I know what I have and this will not kill me. I am always proud to tell my story as you should too. I know MS takes many forms and not knowing how this will react with you, but I hope that you will be able to do anything that you can imagine in life. I have been on the injection Avonex, and even 17 years later, there are still weeks I do not want to stick that dumb needle in me, but I know that it is helping, and I can do this about anywhere. Last week we were camping and I was actually just telling my husband that we can do all these fun things and my MS and injection does not stop it. I am fortunate that I have very little problems with my MS and I am able to do all the outdoor activities I like. Hiking, camping, fishing, snowmobiling, just to name a few. I do get fatigued easier and the heat is a killer, but I push myself as much as I can. Just do not stop your life, keep moving and stay healthy. MS does not own you!! I am sure this is scary for you and pray God has a healing hand over you. Thank you for sharing and keep sharing!
I'm still waiting on my formal diagnosis but my GPs are very convinced as was AE (just waiting on neurology)
Like you I started with weird tingles - unfortunately I don't really have much control of my right leg so I alternate between wheelchair on bad days and crutch on good days (but hey at least I'm still mobile in a sense haha)
I'm actually really excited to get my diagnosis! My GP rushed me to AE because it's been quite a rapid process so they were worried I'd buggered my spine some how - it will be really nice to have the confirmation that it will be life changing, not life threatening.
Lastly I'm so glad to see some people have taken really well to the medication - it gives me hope for the future (no cure, but delaying the progression is better than nothing! 😊)
Best wishes to you all xxxx
Thank you for sharing this. I was diagnosed in 2020. It was a very scary and challenging time. Very isolating and hard because as you say it makes you feel like you are complaining all the time Tell your story. We all need to hear it. It is the only way that people will start acknowledging it and we are so close to finding a cure.
I know this video is old but I hope you see this. Having an Invisible Illness is so difficult, especially as a younger person. People look at you and, as you said, you “look fine”. And, being young, what could possibly be wrong? I was about your age when I started my invisible illness journey and it is still difficult 17 years later. People who don’t live with it just don’t get it, and can be very mean. So glad you have a good support system, it makes a big difference. Sending you gentle hugs and all of the good vibes I possibly can!❤
I saw this comment, and I appreciate it!!! Sending you all the good vibes back!
Finding this in 2024. I’m surprised I have not found you sooner as I love watching all about minimalism and baby things. Currently going through a diagnosis stage but relate to a lot of this. I look forward to watching more of your videos. Thanks for sharing ❤
hi, i have Fibromyalgia and i also have most of the symptoms you speak about, it really has totally changed who i am. I am becoming gradually accustomed to living a very different life.
New follower. Just found you today! I was just letting RUclips play but when I heard you say MRI and lesions I knew where going. Today is my 34th birthday and I have now been diagnosed with MS for as long as I didn't know what MS even was lol! I don't know if you'll ever see this but if you want to talk about treatments or anything I'm willing to talk! Keep your chin up ❤
I have been living with Sjogren's Syndrome since I was 19. That's over 40 years. The symptoms can mimic MS, including migraines and trigeminal neuralgia. It's a part of my life. I make my decisions around it because I have to. Treating a chronic illness like a routine part of my life is only honest. It's a large part of why I am pursuing minimalism. Good for you for treating your illness openly. It's life with an autoimmune disease. Best to you.
My dear, you are worrying too much about people. You are doing amazing! May God Bless your heart and soul with peace and health! I will be praying for you. If you lived near me, we would have lunch ❤️😊
I understand the isolation of an invisible desease. I'm with you.
Oh honey, I’m so sorry 😢💔 I hope you have a mild journey, and that you can still have the life you want ❤ I’ve had similar experiences in hospitals and that can be so traumatizing 😢 These invisible issues are so hard for the people in our lives to understand. I think it’s not just judgement or that they don’t belive you but also hoping and wishing for you to be able to do things 😟 It’s so hard for people that don’t have difficulties to relate to those difficulties. I think it’s valuable talking about this on your channel, not just so that we understand your situation but there are actually many people out here with similar difficulties (CFS/ME and other chronic issues) who will relate to the importance of your channels content for those of us with difficulties too. Not all of us can have active lives and yet or because of that minimizing our lives becomes even another level of important ❤
I have a different autoimmune disease, autoimmune arthritis, and was diagnosed 8 years ago at 23, but my symptoms started in my teens. I’m almost 31 now and having a big flare lately. It hurts to walk or stand up or bend over, hurts soo much. I do feel alone, my family didn’t seem to believe me or really care when I was going through diagnosis years ago. Invisible illness is lonely. But I have a lot of empathy for those who are going through it. You never know what someone is going through.
I read your comment and I broke down crying, it was as if I had written it myself 😭 sending you gentle hugs 🙏🏻💖
I know what you mean about 'burdening' others with talk of pain and discomfort and not feeling well. I, too, feel that others don't understand because I look 'fine', and I don't feel well nearly every day. Having a group of people going through the same thing helps.. Thank you for sharing.
Thanks for posting this. The section about worrying about complaining and the isolation in that really hit home. Our early symptoms are different but so much of this is inline with my experience and it’s so reassuring to hear someone else talking about this.
Thanks for sharing your story 💕 I don’t have MS, but as someone with an invisible chronic condition it’s nice to feel less alone. Wishing you the best!
Oh Elin…. I just found your channel a few weeks ago and I just want to let you know that my heart goes out to you. A very close family member was diagnosed with MS and you’re right. Your entire personal world changes.
I wish you nothing but the best, young lady. And I’ll keep on following your channel and journey.
Big virtual mom hug. ❤️
Oh hugs hon! I live with chronic illness and fatigue that goes with. It’s why I’m a minimalist and why I keep life simple! I’m in control, not my illness. You’re in good company- Courtney Carver started her minimalist journey when she was diagnosed with MS in 2006. It’s part of how she started project 333. She simplified her entire life.
The “you seem fine” is really difficult! That’s NOT in your imagination! It’s very real! I got to where I am extremely careful who I share details with - I just say it is a couple of autoimmune diseases and I have serious weakness and fatigue. I am so done with the well meant advice - the magic cures that people want me to try - that I have tried and didn’t work.
Grieving normal takes time.
You didn’t express negativity- you sound like all of us navigating long term chronic illness that aren’t fixable but can be lived with successfully. ❤️🤗
I live with cronic fatigue syndrom and, oh God, I understand you so much! I am constantly fighting inside me between telling people about it so I can educate them or hiding it from everyone and save me time and efforts 🤦♀️ I am studying psychology and when I had to learn about psychosomatic disorders I was so triggered I couldn't open the book, because of all the times I've heard and still hear that "everything is in my head". I actually have to learn in my psychology books about how sfc is psychosomatic! I love psychology with all my heart but sometimes I hate it so much for this kind of irresponsible statements. I hope things will change with time! ❤️
I can relate with you both and her...
I was goi g to remind her about Courtney Carver- also my husband has MS. It is a journey but simple and intentional is the way to go! Best to you!
Yes to all the above ❤️
@@unrespiro thanks for sharing you're insights. I've had chronic fatigue for 15 years since college in NYC. For me personally, I don't doubt that there are "some" psychosomatic components of chronic fatigue syndrome. But of course there are some very real and traceable physical components too. I got food poisoning which set off a chain reaction of problems plus the extreme pressure and stress from a toxic relationship, to do well in college by my mom and the worry and insomnia brought on by my toxic dorm environment. And the pressure I put on myself too. I read that there was a research study correlating food poisoning with chronic fatigue several years ago. I don't remember any of the sources but please look that up in might help you in you journey for answers.
I was so rocked by your part about feeling doubted because you can mask your symptoms well. You feel like you can't win either way and it leaves you isolated in your own reality shouldering it all while others kinda get a blissful ignorance about it. It's not easy to talk about health issues without feeling like a downer or making things awkward but I'm so glad you talked about it so openly. I think a lot of viewers may resonate for one issue or another. Thank you
You did an amazing job of explaining all of that which is so hard to explain. We see you.
I also have MS and have learned Don’t give up Don’t stop living You! There are many struggles and limitations but Don’t let the “you can’t” stop you!
Hope your healthcare providers are getting you in touch with support groups. I know you know the importance of the emotional aspects of a health diagnosis like MS because of your education but it is hard to think of ourselves as our client :) The MS Society may have resources for you...
Thanks. I don't have MS. But hearing your story and other's helps me understand what a friend with MS is going through. You're great.
I am facing something that is potentially very serious. Health related. I have not told anyone. Mainly because my grandson is getting married soon an I don't want anyone focused on anything bad. Just be happy for these kids. As soon as they finish their honeymoon, I will go to the doctor. I know it will lead to surgery to remove cancer. Thank you for ur story an ur bravery. Praying for you love.
Patti, I am just seeing this. I pray you are OK.
My name is Kelli . Thank You for telling us your journey as difficult as it may have been.
I have MS as well. I understand everything you said and how you feel. It is very lonely. Many prayers and hugs coming your way. Try to stay positive and keep a good sense of humor its the best way to manage this disease.
REmyalination also happens! The body heals itself! You are living in a super powerful body which will try to keep itself functioning all of the time!
If 1% of your body is malfunctioning and attacking the myelin, then 99% is trying to fix the problem! That's why all the symptoms are so unpredictable and come and then disappear again! Your body is busy healing!
What a brave, important example you’re setting. Thanks for trusting & God bless you, sis. 🙏🌸
Thank you for sharing your story. I have a friend who was diagnosed with MS a couple of years ago. I was diagnosed with Crohn’s disease last year.
I was diagnosed w M.S., I believe in 96, 20 years old I was diagnosed RA, I have chronic Lyme’s! I absolutely have been on roller coaster rides w/ it all, I’m still walking, I’m so more prone to catching a lot however, we’re all careful. I even have watched all my 6 grandkids since they were tiny! It’s all a blessing, each day! One thing I still work on, always, know when you’re wearing down, it can cause so much complicated situations, even mental more than normal. Much love, best in all you can find to help your own bodies system, I deeply wish you and all the greatest.
That was brave of you to share. Sending prayers for strength and future remedies that might help heal you or make life better, down the road.
I want to thank you for sharing. I am turning 59 this month, I have a son with special needs, 35, my daughter, now 30. I was in car accident just 7 months pregnant, towards end of pregnancy, led to bed rest until her lungs developed.
My eye doctor 23 years ago told me i had MS, so I had another MRI. I have been thru a lifetime of medical issues, starting in my 20"s. I have not officially been told of MS being part of me, but the MRI and the medical explanation, on one report is positive, next time negative, we don't care when what it is, we want to fix it.
My experiences are similar, but listening to you today, it is the first time a person spoke, possibly explanation of why for over 30 years that I have systems, liaisons in the brain and spine,.
My family and friends, are few and far between, because it is hard to be around me, they don't know why weight loss, they believe basically crazy and looking for attention. People can be cruel, my experience with my son.
You have inspired me to keep fighting, and your honestly going to inspire allot of people. Hope your day is a good one..
Beautifully spoken. Thank you for speaking so candidly. I actually know very little about MS, so it’s good to learn a bit from this video.
God bless you! You remind me of my daughter who struggles with a chronic illness and is learning to live her own best life on her own terms. "Invisible" illnesses can really highlight a lack of understanding and even compassion on the part of others. I'm glad to hear you have a loving husband and family by your side. Thank you for sharing your story.
Medical advancements are discovering ways to hopefully halt the progression of many of these types of diseases. My daughter has CMT and at her neurological hospital appointment last week we heard about many studies and trials continually taking place all around the world to bring a stop to these conditions advancing. 🙏
Your video came up in my feed and I thought “this young woman is even lovelier than I last saw her”…and I watched. What a story of courage and hope! I almost didn’t comment because I thought why would you care about a comment from a random woman in TN. But actually I’m not random. It is no coincidence that I saw your story and I will pray for you and I hope you will continue to share your journey. You have a platform to spread beauty and hope. We all need both so much!
I can empathize with your circumstances, especially when you share the difficulties you experience from day to day as you manage your MS symptoms. When I wake up in the morning I look around me to decide the kind of day I'm going to have; whether I'm going to suffer from “cog fog” or if I will be able to walk w/o pain. I also understand the difficulties you have in feeling sociable with friends and family members. Nothing is easy any longer but maintaining a positive attitude from one day to the next will help you cope well with the life you have ahead of you. I'm a 74-year-old who has learned to manage each day by surrounding myself with friends and family members who care for me and understand my circumstances. You are going to do well 💕.
I just wanted to say that I am so sorry about your diagnosis and pain. I also have an autoimmune condition so I know how isolating and scary they can be. I hope that you are able to find relief and good dr's to help you navigate this part of your life. May you be at ease in your body, mind, and heart.
Thank you for sharing this. What a difficult journey you’ve been on. Please give yourself a lot of grace as you navigate this new life, because what you’re going through is very hard. Wishing you the very best.
I am a recent follower and I appreciate your kindness in sharing your story. I am a 62 year old wife and mother of 2 with MS. I was diagnosed in 1992 at age 32 a few months after the birth of my first child. It took months to diagnose especially then. I had all the many related and unrelated tests they could think of. So worried it was a stroke or cancer or anything that I was tested for. When I finally was diagnosed with MS I took it kind of well. I knew what I had and could research what to do to help. The unknown was just too much. I had an old school neurologist that helped me medically but suggested no children and I had to follow my life plan even without out that support.
I am very blessed that I have never had pain with my MS (I am a pain but have no pain😉) Over these 30 years I certainly have declined in my energy levels and walking. My husband reminds me I have a limited amount of energy each day and I should try to do those things most important to me. I often feel worse for my husband as he didn’t sign up for this but thankfully abides with for better or worse attitude ! It is natural to be cautious about the future as none of us know how our health will be or what these strong meds will do to our bodies. Telling family and friends was hard. So worried about being pitied or treated differently but that never happened. There are always people better than you or worse. As I say, Everyone has something, this is just the little “perk” God gave to me💗We just take each day as a gift and try to be a light to others💐
Please feel free to reach out privately if you wish.
Love and prayers,
Cathy Gunn
Thank you so much for sharing your story. I was just diagnosed in September of 2022, still learning so much about it. Also, still trying to learn, understand and accept my limitations. While very scary to learn the diagnosis it was also a relief in a way to learn that there is an explanation for so many symptoms that I've been struggling with for years.
Hi Elon:
Great video:) Our invisible disease. Glad you are on good treatment. All these symptoms are familiar. The future is for sure scary. We are fortunate to have an explosion of research in MS in our near future.
I was diagnosed 1 year ago on Kesimpta doing well.
Be kind yourself & stay strong mentally & physically as much as you can. We carry foward 🙋♀️
Love from Colo
Fatigue & brain fog is real.
Elin I meant.. sorry:)
Oh wow Elin. My mom has episodic ms is 89 and so much has changed with diagnosis and treatment in her lifetime. She still talks about that spinal tap 70 years later. She took her nutritional health and supplements in her control to feed her nerves and manage her stress and except for flares has had what she calls a normal life. Career pregnancies physical activity the works but had to respect her need for rest. Where I live is world hotspot of ms you are just south of us.
I have had vertigo for a year it was starting to settle then I got a cancer diagnosis. Social support system has been huge. I’m in remission now from cancer will eventually have to figure out the vertigo ( I just restricted my life to function ). I used to invite people I met with new diagnoses of ms to meet my mom because she’s so positive and has learned to adapt to the challenges. I’ve been able to remain working as a therapist mostly right through it all by working virtually but virtual work and vertigo takes a lot of lying down between sessions. I have to take way more notes in sessions to focus and track now and you will find your limits and process as you go. I’m older 62, it’s just so unfair at any age but especially young. I’m reaching out if you want to connect.
Oh honey, I’m so sorry. My heart goes out to you. It took such strength to come out with this. Take care of you.
You were brave and kind enough to come here and tell everybody what it is like and how it feels like. I hope you stay firm and sincere to yourself first every single new morning. I bet we all wish you healing vibes to cope with it all along the journey. ♡
I was diagnosed in May 2021 and also got a terrible spinal headache and thankfully relief with the blood patch. I own a photography business and am hesitant to share about it online thinking future clients won't book me because of it or it will put doubt in my current clients minds. All my close family and friends know and my even my part-time job, but sharing online is an entirely different level. My MS symptoms are different, but I can really relate to what you are saying. My cousin has Lyme's disease and talking with her during the beginning of my diagnosis was really helpful in many ways. The older I get the more I realize you can understand something but not really get it unless you experience it yourself. Thank you for being brave and sharing your story. It's a big deal.
I also have MS, but I have learned from the outset, to keep thinking posiitive no matter what you are told. Always remember, if you think positive your life will be positive.
8o
Omg thank you for this ❤.. my son is your age and his life was changed this weekend after getting 2 MRI’s , spinal tap and a phone call telling him about a lesion on his brain. He was immediately given a prescription for prednisone and was told the MS society will be in contact with him. What a shock to say the least but you have helped me understand a little bit more . Thank you and I am sending prayers to you and your family .
I appreciate your story. I'm 55 and just diagnosed. My journey is just beginning so hearing others does help. ~ Thank you.
Sending good thoughts your way!
Thank you for finding strenght to share. I HATE when people think one complains just to get attention. Why is there such a bias that if you look fine you ARE fine. These people have never been not well. You don't necessarily look bad when you feel awful. You are strong and please stay that way. I find what helps is not to concentrate on your symptoms. It is new you, this is how you process the world now, the best is to embrace it. Sending love ❤️
Oh my goodness....I'm so sorry 🙁 2 bits of advice....read The Wahls Protocol and look into articles and videos by Terry Wahls. Also, Courtney Carver from Be More With Less was diagnosed with MS a while back. You are so right...every persons journey is different but you may find bits and pieces from each of these resources that will directly relate to you or that you can find inspiration in. I have Crohn's disease and the situation in similar in that each person is helped by different things....what works for me won't necessarily work for others. However, we can all come together as people with autoImmune disease and help each other. Please know I am thinking of you and sending you tons of healing thoughts and love ❤
I was diagnosed with CHF in 2018. I remember going through similar stages of emotions. My first thought was that I was going to die too. I was terrified until I understood more about my disease. Through diet and exercise and medication my heart has healed substantially. I pray that you will find strength and support in our RUclips community. 💝
You are helping so many people by sharing your journey. A true friend loves at all times.💕
I told everybody when I wrote a song called Hard To Walk and put it on my channel.
It's hard, but you got this!!!! 🙂
Sending my love and support!
My mom was diagnosed with MS in 1987 when she was about 50. She had spent 15 years trying to get answers to her miscellaneous symptoms. She was treated like a stupid hypochondriac woman by so many doctors. That was very hard on her self-esteem! She had a slow progressing form of the disease, so that is probably why she didn’t get diagnosed earlier.
Here are a few things that she realized:
-She couldn’t have 2 busy days in a row. That would set off a bad couple of weeks. As she got to be in her 70’s and 80’s, she would only do one or two things a week. We would combine trips to a doctor visit with lunch (we would sit in the car to eat), a pharmacy pick-up and sometimes a quick trip to the grocery store. That would be about 3 hours and more than enough time out. She stopped going to clubs and church in her last 5 years, but that wasn’t because if MS, but more from depression and elderliness.
-She needed to avoid getting too hot so she would carry ice water with her at all times and stay in the shade. She sold her black car with a black interior and bought a white car with a tan interior.
-If she did light exercise every day, that helped her emotionally and physically.
-If people were doubters, she felt sorry for them. She tried to learn from their faux pas and be more empathetic when others had difficulties.
By coming forward and talking about this, you will be helping so many people! There are viewers that are having symptoms, or have people in their lives who have symptoms and have no clue that they need to get checked! And those that are already diagnosed need support and can offer support!
Bless you and I hope you continue to be open about your journey!
Bless your mom. I felt like I was reading my life story. Unfortunately doctors still seem to think women are depressed or hysterical if we aren’t 100% pleasing at all times. I’ve learned over many years that I know what I can do and I don’t apologize for speaking up when something doesn’t work or people won’t listen. I , too, look fine and smile through the challenges but it is definitely exhausting. I’m glad your mom has your support.
I was wondering with older women. My sis has ms for years but I am 58 and fatigue and pain is crazy.struggle bus. Dr ignore
I could be your mother; you described my life exactly! But my diagnosis is psoariatic arthritis, another autoimmune disease. I have multiple lesions in my brain and MS was ruled out early on because they remained unchanged on periodic MRIs. God bless the MS doctor who stood by me and referred me to other specialists to determine exactly what autoimmune disease I have. When PsA was confirmed, he said it apparently had caused inflammation in my brain at some point, causing the lesions. Three years later and he still keeps me as a patient because the symptoms of MS and my PsA are similar. I also am counseled by mental health at the MS clinic for my chronic depression and anxiety. I'm primarily followed by a rheumatologist, however.
You and your mom might get a kick out of the "chronic illness humor" Instagram account. Laughter is the best medicine! I'm 67 and so far am able to navigate through this alone but in slow motion.
What a kind ans wonderful reply for her, sharing info. about your mom.
I just discovered your channel and then found this touching video. You explain the struggle so well... I am currently in chemotherapy and the fatigue is so overwhelming. I look perfectly fine and fit though so I feel like no one really gets it. And I'm not just tired; it's profound, deep fatigue... just doing simple tasks becomes this overwhelming challenge. I don't want to seem lazy or complain too much, but I'm also incredibly frustrated by my limitations and feel like no one could understand, especially because I look fine. Anyway, your video found me at a really relevant time in my life. Thank you for posting something so honest. Btw, I personally find channels where the RUclipsr has this idyllic, perfect life annoying and depressing. This channel feels real. So thank you for that.
Even though it can be terribly difficult to tell our stories, it can also help more people than you would think. I’m a sharer….it’s just my nature but I’ve found so many people with similar conditions and stories that it’s been so therapeutic and healing for myself and others. I guess our biggest fear is being judged and thinking that others won’t see us the same anymore. What they really do see is a very authentic person who is brave and courageous in so many ways.❤️🙏
Very similar story here. My two nurse sisters were the least supportive-the other two and my parents were great. I did Immediate dietary protocols-no dairy or gluten. The MS Diet from the UK, Paleo-specifically MS research work of DR Cordain. He even has a CD of his lecture that is very good…and of course, everyone is aware of The Wahls protocol. We need sunshine (vit D) more so than most. I went hardcore and felt some relief within 3 weeks. While living in New Zealand, I did an MS stretch class and found physical therapy through that class. Important to move, but very slow pace! We Americans always want to push and go fast. Important to meditate to let your system slow down to heal. Your fatigue will be the last to go, but it will! The pain and other symptoms will resolve first, which is a good thing. My pain disappeared first, other symptoms and cognition improved greatly…and finally the fatigue left-but it will come back if diet isn’t adhered to or you’re under stress. There is most certainly HOPE!!! Maybe you could host a zoom call for those of us on this journey. Sending many hugs!! 🤗🤗
I'm coming to a place where MS looks like it could very well be my diagnosis. Dealing with and getting to this has taken its toll on me. I had to stop this video twice because it was just too similar to my story. I suffered a seizure in May and have been steadily declining for a few years up to and including now. It's horrible and I am scared. I've given up so much already, I'm afraid of what the future will take away from me. Thank you for this video none the less because even with all my issues, it's enlightening to see you handling this with grace and honesty. I wish you nothing but a long healthy life!
How brave of you to tell your story and in such an eloquent way. My MS story is very similar to yours, with similar symptoms and lesions in the same places. If my house was in order and clean, I’d be almost be inclined to say we are kindred spirits 😊
Hey, my house is messy sometimes :) sending you all the good vibes. I’m sorry for whatever you’re going through with symptoms right now, and thanks for sharing. Feeling less alone in this moment :)
I am so glad you are sharing your story. When I was young, people didn't talk about many illnesses that they discuss now. Be good to yourself, you deserve it.
Tina, Al's wife
I am so moved by just how thoughtful and insightful you are with your life. You have a wonderful attitude.
Aw, thank you David
At 31 I was diagnosed with RA. A year leading up to it I felt achy and feverish for a year. There were days I could hardly walk. I was scared to go to the dr. I literally homeschooled my children from bed many days. When I got the diagnosis I wept alone as well. Granted, treatments had come so far, but the worst scenarios easily come to mind. And the meds carry heavy duty side effects, including heart disease and lymphoma. So researching meds and treatments and what's covered can be frustrating. Now at 44, I am glad I found a lesser dangerous med, have lost 110lb, and I'm doing well with minimal flare ups. It may seem less significant than an MS diagnosis, but I can relate, as do so many others. And I totally get not wanting to be the Debbie Downer. That's the hardest part. When you want to cry, or scream, or vent, or even ask for help, but feel you can't. I have found much comfort in my faith. When you find there's no where else to look, look up.
Thanks for sharing was diagnosed with RA at 46 I am on some heavy med but thankful for them. I started having nodules, hard to walk. Well I also need to lose some weight for my heart and RA. Can you please share how you lost your weight?
@@andriawhite4226 I am a very frugal person, so Weight Watchers has worked for me. If I have to spend money on it, I will do it.
As someone who has lived with symptoms of relapse-remitting MS for years, I just want to validate that RA does NOT seem "less significant than an MS diagnosis" to me! If anything, to me RA seems way worse, but I know autoimmune disease manifests differently for everyone. We are all in the same club, though. < : - ) Hugs and good wishes to both of you!
Ooh Elin I just wished I could give you a big hug 🤗. I shed a few tears listening to you but do know that I will keep you constantly in my prayers. You are a beautiful and exemplary young lady and I’m so happy that your family and friends support you. Lots of love ❤️
I am praying for you... you are brave and strong for sharing this.. take rest when you have to.. no pressure in terms of vlogs or anything from us, your community... May you be well soon in JESUS name..
I was beyond saddened to hear of your diagnosis, Elin. I am sending you so much love, healing and blessings. You are such a beautiful soul. Just be very gentle with yourself and take each day as it comes. I am truly glad that you have such loving support in your life: your husband, your family and your friends.
Girl, you’re gonna be okay! I work in the PAD prior auth department for state of CA (infusions/ Chemo/ hematology). There are soooo many options to help you and as you learn more, it’s gonna get easier to know how to help your body. Eat healthy, stay hydrated, get good rest. I’ll be cheering you on!!!
Hi, I want to reach out to someone like you to point me in right direction. I’m in PA with lyme, ME, etc. I have not been able to get immunotherapy infusions to help me. What should I do?
You’re a beautiful and courageous young woman! You are Exhibiting extraordinary strength and very difficult times.
Thankyou for sharing sweetie.you are such a lovely girl you will find an inner strength I’m sure.🥰🥰🥰👋love from England
I’m so sorry this is happening to you. I hope you are able to find a support group for emotional support. Hopefully your symptoms will subside and you can find a protocol that works well for you.
So sorry to hear about this. Sending healing thoughts to you
I'd never judge you because you have a type of sickness.
I think your very courageous for sharing and what your going through.
Stay strong
Much love
I am experiencing many many symptoms of MS. Its pretty scary! My doctor has ordered an MRI so now I'm waiting for a call to book the MRI and see my results. The waiting for me is really hard because its scary not having answers and not know what to do to help my symptoms. Thank you for sharing your story because i related to a lot of the things you have talked about.
Sending you a big hug from Austria💕 much love & many blessings
Thank you for posting this. You made me feel so much less alone. This video found me at the right time. I lost a position as a retail manager in 2020 because this happened to me. I love your videos. Thanks for being here. 🙂
hi i can relate, having spinal arthritis, and fibromyalga, its tiring and you feel alone, but there are others out there that understand, and people close to us, sending love and healing vibes x
Wow, what an amazing attitude you have. I'm sorry. I wish you the best and am praying for you.
I'm so sorry you have to deal with all this. Nothing is more important than your health. I hope you quickly find your new normal and get all the help you need. You are so strong for sharing this. I hope it brings you more support. Thinking about you and wishing you all the best.
So sorry to hear about your struggles. Wishing for you long periods of remission, better luck with the medical red tape, and especially a cure discovered.
Last year I was diagnosed with MS and it completely changed my life. But I stayed positive and read books, believed God. And always said to myself that now I have to live with it. I always do strengthening exercises. So now I have improved my walking and somehow able to fight with it.
If you don't follow Courtney Carver, she is also an influencer who became interested in simplifying her life after an MS diagnosis. I enjoy her writings/YT channel and the podcast, if you haven't been following her I highly recommend it. All the best to you with this challenge and thanks for sharing, I'm sure it will help others.
Praying for your health and journey. Thank you for being vulnerable.
I never comment on RUclips videos but wanted to take the time to thank you for sharing your story. I absolutely love all your videos, and appreciate you being vulnerable with this community. Sending you love and support. 💗
Thanks so much!!
You are very noble and a strong warrior. Thank you for sharing.
My heart goes out to you. The health care system can really be horrid. I hope you feel better for telling us. MS is so weird. My daughter has it too. Be good to you all the time. I believe in you.
Thank you for sharing your story. It hit me on many levels. I too,have a chronic illness that I fight each day,but please know that life can still be very beautiful and worth.living. God bless you and your family,it’s really gonna be okay.
Sending you so much love, strength, and heaps of healing 🙏❤🙏
What a blessing that you now have found a life path that is satisfying. I’ve only seen a few of your videos but you seem like such a level-headed and self sufficient person. God bless you and your family. ❤🙏🏻