You give light at the end of the tunnel for myself. Was diagnosed two days ago and waiting to see if insurance will cover Ocrevus or if I have to do another drug. Thanks for sharing
I'm so glad you posted an update. I had wanted to post to another of your videos but was too sick/fatigued to even type. Sounds pathetic trust me I know. But it is what it is. I was diagnosed age 42 July 2020 aggressive rrms. My tecfidera didn't work. Started Tysabri infusions in January. I pray so hard that I will be able to feel normal one day too because I am like you. I dont want this disease to run my life. I have a life to live. Just turned 43 in Feb. 5 kids depending on me to be in their lives and I want to be able to hold a grand baby one day without fear of dropping them. I understand your emotions! It's like our empathy towards others is just not there or as strong. People really can't understand because they aren't capable. Fatigue is different than ms fatigue. My cousin has pots disease and she says same thing. People don't really realize how lucky they are not to have an autoimmune disease. Even though my husband is amazing I still feel incredibly alone. Scared. People say well you look amazing you can't be that sick. That's the problem with auto immune diseases. They have invisible disabilities that my neuro says is just as bad if not worse than thr visible ones. Keep fighting. Having hope. You are not only beautiful on the outside but inside as well.
Thank you so much for reaching out! I know exactly what you mean and it doesn’t sound pathetic at all. It’s rough and it takes time to get the rest we need just to do the simply things. I’m sending all the good vibes your way that the medicine you are on starts to truly help you. I get so frustrated and maybe it really is just because I get so tired of being tired the way this disease makes us feel. You sound like a fighter! You have more good days ahead, stay strong Donna. Mentality seems to be half my battle for sure. And you’re right, people who don’t have an autoimmune disease don’t know how lucky they are. We will always fight harder. I will keep you in my prayers. ❤️
Wow that is really motivating to hear that you are doing so well. Keep up what you’re doing- really happy for you! Yes the brain fog! If mine subsides like yours I will be grateful I just had my first Ocrevus infusion today. No DMTs before this. Just diagnosed in 2021. Had a pretty bad reaction at 30 minute mark when they increased to 60. They pulled it back to 30. Then gave me more Benadryl and the severe redness and itchiness on face and scalp disappeared within 5 minutes and did not return. Hope you are still doing well! Take care.
Thanks for your videos and just being real and choosing to share your MS journey with others. It takes a lot of courage to do that and it’s so helpful to people like me being newly diagnosed. Just wanted you to know I appreciate you taking the time to do these videos. I’ll definitely be looking for more updates!
Thank you! It took me about 3 years literally to become comfortable and ok with accepting the fact. And I just want people to know they are not alone in this and have every right to take the time to feel how they feel and deal with it in their own way. It’s a journey that is for sure. I’ve never done a video before I started this channel. I’m a little scared every time talking about it. But becoming more comfortable as it goes. I’m not perfect by any means going through this and I’ll share more of that as we go. Stay strong Suzanne!!!
Hi Ashley, my name is Rye Babcock and i have had RRMS since 2016. Started on Tysabri but had to stop after becoming JC positive then was taking Tecfidera but just had too much flushing. Now on Dec 28th will have my first infusion of Ocrevus. Must say I’m a little scared but feel this is my best shot on getting more control of my symptoms without the constant reminder I’m sick by monthly infusions or taking a pill 3 times a day lol twice a year sounds great to me. 😃 its been a while since your last update and was wondering how you are doing now. Right now I’m doing ok. Do not use a cane anymore and have been doing everything i can to keep it that way working out 4 to 5 days a week and in the process losing 25 pounds of pandemic weight. 😊 I’m disabled now worst symptoms are invisible Memory issues, fatigue and brain fog. My hope is that i may have improvement with them. anyway thank you for posting your experience with Ocrevus and with MS sincerely Rye
How progressed were you before this? How many lesions did you have? Interested to know how far along you were before this. I was diagnosed ten years ago and just got my very first dose. My brain fog is pretty heavy and my left leg is not working well. I used to race bicycles so it’s hard to accept. I go to the gym a lot as well. I’m really hoping and praying this gets ne back to somewhat normal because I want to activate beast mode again.
COME BACK AND DO A LIVE!!! We could chat and encourage you like you’ve encouraged us. Well me. 😊 I’ll speak for myself but I bet others feel the exact same way!!! Where did you go!?!? #fkMS
Yes I was diagnosed a couple years prior to Covid. The drs said based on my scans I’ve had this for years, even late teenage years and had no idea. Just not enough symptoms them to think anything was wrong.
You give light at the end of the tunnel for myself. Was diagnosed two days ago and waiting to see if insurance will cover Ocrevus or if I have to do another drug. Thanks for sharing
I'm so glad you posted an update. I had wanted to post to another of your videos but was too sick/fatigued to even type. Sounds pathetic trust me I know. But it is what it is.
I was diagnosed age 42 July 2020 aggressive rrms. My tecfidera didn't work. Started Tysabri infusions in January. I pray so hard that I will be able to feel normal one day too because I am like you. I dont want this disease to run my life. I have a life to live. Just turned 43 in Feb. 5 kids depending on me to be in their lives and I want to be able to hold a grand baby one day without fear of dropping them.
I understand your emotions! It's like our empathy towards others is just not there or as strong. People really can't understand because they aren't capable. Fatigue is different than ms fatigue. My cousin has pots disease and she says same thing. People don't really realize how lucky they are not to have an autoimmune disease.
Even though my husband is amazing I still feel incredibly alone. Scared.
People say well you look amazing you can't be that sick. That's the problem with auto immune diseases. They have invisible disabilities that my neuro says is just as bad if not worse than thr visible ones.
Keep fighting. Having hope. You are not only beautiful on the outside but inside as well.
Thank you so much for reaching out! I know exactly what you mean and it doesn’t sound pathetic at all. It’s rough and it takes time to get the rest we need just to do the simply things. I’m sending all the good vibes your way that the medicine you are on starts to truly help you. I get so frustrated and maybe it really is just because I get so tired of being tired the way this disease makes us feel. You sound like a fighter! You have more good days ahead, stay strong Donna. Mentality seems to be half my battle for sure. And you’re right, people who don’t have an autoimmune disease don’t know how lucky they are. We will always fight harder. I will keep you in my prayers. ❤️
Hi, just read your comment and even though it's 3 years old I thought I'd check with you. Have you heard of LDN? It's helping lots of people with ms
Wow that is really motivating to hear that you are doing so well. Keep up what you’re doing- really happy for you! Yes the brain fog! If mine subsides like yours I will be grateful I just had my first Ocrevus infusion today. No DMTs before this. Just diagnosed in 2021. Had a pretty bad reaction at 30 minute mark when they increased to 60. They pulled it back to 30. Then gave me more Benadryl and the severe redness and itchiness on face and scalp disappeared within 5 minutes and did not return. Hope you are still doing well! Take care.
Thanks for your videos and just being real and choosing to share your MS journey with others. It takes a lot of courage to do that and it’s so helpful to people like me being newly diagnosed. Just wanted you to know I appreciate you taking the time to do these videos. I’ll definitely be looking for more updates!
Thank you! It took me about 3 years literally to become comfortable and ok with accepting the fact. And I just want people to know they are not alone in this and have every right to take the time to feel how they feel and deal with it in their own way. It’s a journey that is for sure. I’ve never done a video before I started this channel. I’m a little scared every time talking about it. But becoming more comfortable as it goes. I’m not perfect by any means going through this and I’ll share more of that as we go. Stay strong Suzanne!!!
where are you? how are you?
I’m back!
Hi Ashley, my name is Rye Babcock and i have had RRMS since 2016. Started on Tysabri but had to stop after becoming JC positive then was taking Tecfidera but just had too much flushing. Now on Dec 28th will have my first infusion of Ocrevus. Must say I’m a little scared but feel this is my best shot on getting more control of my symptoms without the constant reminder I’m sick by monthly infusions or taking a pill 3 times a day lol twice a year sounds great to me. 😃 its been a while since your last update and was wondering how you are doing now. Right now I’m doing ok. Do not use a cane anymore and have been doing everything i can to keep it that way working out 4 to 5 days a week and in the process losing 25 pounds of pandemic weight. 😊 I’m disabled now worst symptoms are invisible Memory issues, fatigue and brain fog. My hope is that i may have improvement with them. anyway thank you for posting your experience with Ocrevus and with MS sincerely Rye
yeeesss! thank you for these videos
How progressed were you before this? How many lesions did you have? Interested to know how far along you were before this. I was diagnosed ten years ago and just got my very first dose. My brain fog is pretty heavy and my left leg is not working well. I used to race bicycles so it’s hard to accept. I go to the gym a lot as well. I’m really hoping and praying this gets ne back to somewhat normal because I want to activate beast mode again.
So nervous going tomorrow for the first one and thank you!
Hi there! How are you feeling after your first infusion ? At the time you’ve probably a my had it twice now. Hope you’re feeling well.
Any updates plz ❤️
I’m back!
I might start Ocrevus, still deciding because it scares me to death. How have you been feeling?!
Hi! It was so scary, but it has given me my life back. I’m still on it.
COME BACK AND DO A LIVE!!! We could chat and encourage you like you’ve encouraged us. Well me. 😊 I’ll speak for myself but I bet others feel the exact same way!!! Where did you go!?!? #fkMS
I’m back!!!
@@m.sletstalk8500 WOOOOOOOHOOOOOOOOOOOOOO!!!! 🙌🏽🙌🏽🙌🏽🙌🏽🙌🏽❤️🙏🏼
So question did you get sick prior to your dx since it was covid year. I was dx same year
Yes I was diagnosed a couple years prior to Covid. The drs said based on my scans I’ve had this for years, even late teenage years and had no idea. Just not enough symptoms them to think anything was wrong.
I did ocrevus fir a year 2020 to 2021 now i am off side effects to many
Are you going thru the side effects now after 2 years?