Finally opening up about something I've been hiding | My Diagnosis Story
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- čas přidán 18. 06. 2022
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Today I'm sharing my diagnosis story.
Diagnosis, multiple sclerosis, ms
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💪
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.
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.
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 CZcams and in his website. Lots of people have reactions to spinal taps… why do they lie??
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
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 CZcams , 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.
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.
So sorry to hear about this. Sending healing thoughts to 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
Praying for your health and journey. Thank you for being vulnerable.
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.
so sorry you and going through this. thank you for raising awareness.
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!
So sorry to hear about what you’ve been going through. Thanks so much for sharing your experience and thoughts. I really admire your strength and perspective, how you’re still feeling so much gratitude. Sending you lots of love and hope you continue to take good care of yourself 💗
I found this quite heartbreaking and incredibly eye opening. Thank you for sharing your story, wishing you the best.
I'm really sorry to hear that! And I really appreciate you sharing. This comes at a point in my life where feel so overwhelmed because I completely forgot my priorities. And listening to your story kind of helps me to remember them. Thank you so much for sharing and all the very best for your and your loved ones to find a good way of living with a new reality that still holds a lot of love and joy. Just in a different way now.
So sorry to hear about this. 😢 Thank you for sharing because you are helping others. ❤️
Thank you for sharing this, we are honoured to hear it. I really feel for you having to go through that diagnosis on your own. You are an inspiration for your positivity. Please keep us updated (if you want to) x
Love and prayers for you! I can relate to your fears and worries. Continue to move forward, it’s all we can do, whatever the situation!
What a brave, important example you’re setting. Thanks for trusting & God bless you, sis. 🙏🌸
Thank you for sharing your journey and being open/honest. Sending you light!!!
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.
So sorry to hear this. Thank you for sharing. Sending blessings and hugs. 🙏🏼❤️
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
Wow, this is a lot. I'm so sorry you have been going through all this. It is so difficult to deal with a chronic illness - especially one that doesn't have obvious outward signs. I'm glad you got answers! Thank you so much for being willing to share with us!💗
I’m so sorry. Sending you lots of love 💕
How brave you are, so giving in sharing how you feel. Even in your pain you are helping others. Sending ❤️ love
I can totally relate to "you seem fine" struggle, I constantly feel, that people don't believe me that I actually am exhausted, or that I feel dizzy - it is not obvious that I do struggle inside and this struggle takes huge efforts and energy out of me.
But I haven't find a solution or a way to keep the balance between taking care of myself and my feelings and not overburdening people around me with my condition...
You are so brave, honest, vulnerable and powerful at the same time. You are a beautiful human inside and outside, thank you for sharing this with us. I wish you strength both physical and mental to take control over your life ❤
So brave! You have my admiration and respect. Lot's of love for you and the ones who love you
Sending you so much love, strength, and heaps of healing 🙏❤🙏
Thank you so much for sharing this! I can only imagine what you must be going through. You are so brave, and I appreciate that you've shared this. Sending you so many hugs and good energy! Please continue to update us with your story - you have such an amazing channel, and we are here for you!
I appreciate you sharing this. I went thru a health scare years ago, that still causes me anxiety when I think about it now. I don’t know a lot about MS, but I know it’s serious. Why anyone would make you feel as if you’re making a big deal out of nothing, is beyond me. This is where you make your circle of support with friends and family who are supportive and understanding.
Much love and prayers to you. God bless you. You are so brave and courageous to share your story. Remember that you are not alone in this. Big hugs.
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.
thank you so much for sharing your ms story! i totally feel the "being vulnerable is being free" mentality.... at least right now in my ms journey. i also struggle with the same unknown future possibility of progression; so happy to hear you've moved into seeing it as a gift. hopefully one day i get there. sending you a hug!
Thank you for sharing, I know it was hard. It’s so encouraging to hear from someone struggling that it’s ok to be afraid and unsure, it’s ok to ask for and accept help, it’s ok to be wherever you are in the acceptance process of whatever the struggle is. Sending good vibes to you, and wishing you all the best.
So sorry to hear this. Many hugs to you! Hoping for great advances in medicine, and holistic practices as well.
So sorry you are going through this. You are in my thoughts and prayers. Have a blessed day!!
You are so brave for sharing this! I wish you all the best in this difficult journey ❤
I hear you. Thank you so much for being so open and honest and brave. You will have helped so many of us to feel less alone by sharing your story 💞
You are incredibly brave to share this story. I can’t believe you are still doing videos. Take care of yourself ! You are an amazing woman. Sending hugs and positive energy from Montreal 💚💚💚
Sending you love and hugs. It is very brave of you to share this. There is a huge community of folks who are sending you love and trying to lift you up.
I am so sorry to hear your diagnosis, my heart goes out to you. Thank you for sharing, that must have been incredibly difficult for you. Sending love, best wishes, stay strong xxx
Elin - thank you for sharing your journey. Please know that so many of us are holding you in our hearts & prayers, & will continue to support and follow your journey. Allow yourself the space & grace to navigate this new direction life shoved you into. We are all here to listen & support you in all the twists and turns. Thank you for having the courage to allow us in. #TeamElin!❤️
Thank you so much for sharing and opening up. This makes us appreciate all of our blessings even more. I pray that this passes. Stay strong, you have a community that loves you. ❣️🙏
Praying for you 🙏🏻
You are such an inspiration to me, very grateful for sharing your story on here
So sorry to hear this news and praying for you to feel better.
Thank you so much for bravely telling your story. Your vulnerability and honesty will help others.
I hope you receive nothing but love and support from sharing your story. I'm so sorry that you're going through this. I'm sure it was so overwhelming, painful and frightening. Many, many hugs.
Thank you so much for sharing your story. I’m so sorry you have to deal/live with this illness. I wish you the very best. And just so you know, you weren’t negative at all. You were just sharing truth. I have an autoimmune illness, so I understand what you mean about people not thinking you’re sick because you “look” well. It hurts, it’s frustrating, and it sucks when that happens. Some people will just never get it. It sounds like you have a great support system and that’s all that matters. Take care and share whenever and whatever you want - we’re here for you.
Thank you for your transparency. We’re here for you. You’ve given us so many tips and tricks on how to live a more intentional life that this makes our heartache for you. Sending you so much love and light.
Thank you so much for sharing your story! I'm on the cusp of a probable MS diagnosis myself and hearing the experiences of others - good and bad - is so helpful. Everything you said resonated so greatly, including the odd need for external tension in life (the possibility of MS has, improbably, been a counter to my depression), and the idea that literally every day is uncertain (I could be hit by a bus tomorrow!) so it's not actually an unusual place to be.
Cool to see you put it out there! Super powerful and empowering to hear this story. Hang in! Let's keep that mobility :)
I'm so sad that you are having to go through this, I listened with dismay. Your courage shines through and I hope you feel heard by this community who follow you. We are listening
Thank you for sharing your journey with us and being so vulnerable. I’m praying for you and hope that your symptoms ease.
Thank you for sharing! Praying for you 💕🙏🏻 I can’t imagine the fear and isolation. Please talk about it anytime you need to.
I am so sorry to hear about your diagnosis, but I am glad you will be properly armed with the information you need to live your best life! Listening is a kindness, but telling your story is so brave. Thank you for sharing.
I liked that you shared this, I never knew of MS, hang in there, my prayers go with you.
Thank you for sharing your story. You are so brave and such an inspiration. I will say prayers for you. Stay strong, you will persevere! 💕
Bless you for having the courage to share your story. I pray you have the support around you to help you on this journey 🙏
You're a courageous and brave woman, please don't lose hope and hang in there! Sending lots of love and prayers!
Best wishes as you navigate this diagnosis. Thank you for sharing. All the best to you!
Thank you so much for sharing this with us, I know that being vulnerable on the internet is scary.
Thank you for talking so clearly and honestly about your diagnosis and the way MS is affecting you. Your insight and awareness of how MS is affecting different aspects of your life is such an impressive account that I hope medical professionals read it and use it to help others similarly diagnosed. Listening to you, I was struck by your courage, intelligence, empathy and the warmth of your lovely personality. I am certain that your personal experience described here so openly and lucidly will help others in facing and coping with a similar diagnosis. Thank you again.
That sounds incredibly difficult and scary. I have a chronic illness and can relate to so much of what you said. I hope you have the best possible outcome and that you suffer as little as possible. Thank you for sharing your story.
I am so sorry to hear about your diagnosis. You are so brave to open up about something so difficult and personal. So thankful you have a strong support system with you - that is so so important. What a beautiful and honest outlook you have about it all… sending you so much love and will be hoping that the symptoms don’t get worse. Your story is so valid and I know the feeling of giving disclaimers esp when I’m nervous.. can’t imagine how much it took out of you to make this video. But I (and many others) am really grateful for it.
Oh, dear Elin, I am so sorry you are going through this. Thank you for sharing your story. I wish you all the best.
Congrats on having what it takes to share your story! I have a story much the same, not MS, but a rare disease that pulled my feet out from under me at age 47. That's been over 20 years ago. These things change us. Life looks different than it did seconds before the diagnosis. Some things get worse, many get better, but it's my opinion that we become stronger from it all. Please continue to share your journey with us, and know that many of us walk along side of you.
Your story is humbling, thank you for sharing. I have heard of people reversing the early stages of MS with dietary changes, something to investigate at least.
Prayers going up for you. I do too have MS. It's really hard. I had an anxiety panic attack when I found out.
I've been following your channel since the beginning and I jus wanted to say thank you for being open and honest about your health issues / situation! 💐 All the best with everything 💛
Thank you for your bravery in sharing your story. My oldest daughter has MS. Your story really helped me to understand more of what she's going through.
Thank you for sharing your story. So brave! Please take care of yourself. I enjoy your videos so much and pray for strength through your journey 🙏🏻❤️
Sending you lots of hugs! Stay strong! You are a great person! Thanks for sharing! ♥️
You are so brave and so kind that I' m sure you will live a long and a great life. Thanks for sharing your story.
Sending support and encouragement. I was diagnosed in 2018. Your story sounds very much like my own. Life changed in lots of ways, but I have learned so much about myself, my support team of family, friends, medical staff. I feel you on the "you look fine." that people say to you and how it makes you feel alone. You aren't alone there is a community to support you. I think you making this video and being vulnerable is really inspiring and helpful. Sending digital hugs and handclaps your way!
What tough news, praying for you. I have a family member (also a young woman) who had a similar diagnosis. Thank you for sharing.
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.
Thank you for sharing this story. I am grateful that you felt you could trust your listeners with such profound struggles as well as some insights. I am sorry about your ER experience and having to cope with hearing all this alone. It goes to your strength as a competent person (even if you did have trouble hearing the information and then having to share it with Andy later). I trust that you will navigate through your life with the grace that comes from your core and from knowledge that you have a wonderful support system as well. xo
You’re inspirational and loved. Thank you!
Sending you much love and many blessings! May you be guided in caring for yourself and may you have the very best quality of life possible. Life is precious! This kind of diagnosis is like getting hit by a truck. I had an advanced cancer diagnosis in 2012 and you are already a survivor for making it this far! Prayers, strengh and hugs to you!
Thank you for sharing something so personal and sensitive. I pray that your family and friends embrace you tightly with constant love and support. ❤️
Elin, I’m so sorry you’re going through this. You are a very brave lady and I wish you all the best navigating the medical care system and this new life.
Thank you for sharing your story. I also struggle with "invisible" chronic illness. Elhers-Danlos Syndrome, arachnoiditis, and a couple sleep disorders that are related.
I had spinal headaches for 8 months at age 19 following a back surgery. I have resulting neurological damage. So while we don't share the same dx, girl, I feel you. You're not alone. It's hard.
Sending you all the good vibes & hoping that today is a good day for you!
Thank you for sharing your story, you are very brave. It's a good reminder to be grateful for every day and all the little things we take for granted. Praying for you. Stay strong x
I can really relate to you. I dealing with autoimmune POTS. It's another invisible illness and people think if I look fine from outside that I must be fine. It's very frustrating. Please know that you are not alone. Thank you for talking about this.
You are so brave for sharing your experience. It is important to talk about even the painful things in life because that's what makes us human. And in sharing that you are also creating an opportunity to connect with your community more and expand that community. I have a feeling the people in your life do not think you are making any of it up and that it may be the harshest critic of all who is planting that seed, your self. Be gentle with yourself, give yourself time to rest and just be. I'm sure it will take a long time to learn how to navigate and I'm sending all my love your way while you do so. Hugs from San Francisco
Thank you very much for sharing. Your ER story was heartbreaking. I have three family members with MS and each one of them are so different in the way it affects them. I wish you well and I will keep you in my prayers 💕🙏
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 ❤️
Prayers and hopes for your health. Thank you for being so real, and for adding such depth to the intention and wisdom that you are sharing in your channel. I commend you for approaching so many things with thought and grace. You are making room for relationships and experiences and adaptability with all that you are focusing on. Wishing the very best for you, and so happy to be one of your subscribers.
Thank you for being so open and honest about your health situation. You are such an inspiration.
Your mental outlook is going to be so important going forward.
You will find the things that you still can do and you will prioritize the way you spend your time.
Praying for you. God bless you.
Thank you for sharing so honestly and authentically. You don't seem "downer-ish" to me, simply living your experience and navigating it as best you can. Much spirit love and hugs coming to 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. ♡
My heart goes out to you. You have every right to feel all the emotions you are experiencing. My prayers will be with you. I love your videos, and how soothing they are.