Thank you all for your patience with how long it took for me to post this vlog. I had my second infusion today! And part 2 of this vlog will be up soon. 😊🧡🎗 Until then I send you all my love and strength across the globe!! 🙏🏼
Thank you for your words. I hope by being honest I can help someone by sharing my story. I wish would have had someone to follow and watch that has walked this road before me. I think I would have found it helpful. Yes it was wonderful having that moment with my dad. He wish he was more near and could help out more but he is giving much support from overseas.❤️ Have a wonderful day Alicia
Thank you so much ! Getting my first infusion in 3 weeks and I feel so stressed out. Watching your video made me realise I'm not alone in this. Thank you, thank you, thank you !
You are never alone! You will be fine. Try to drink a lot of water the day before and during. Bring something to eat and cozy socks for comfort. Bring some kind of entertainment. You got this! ❤️ I have vlog of my previous infusions if you want to see how my experience was. Know that it get easier each time. We are here for you. Much love
Lii- You my friend have the right mindset:) It's not saying its not scary at times with MS, but you & all of us will overcome. Definitely on the same wave length. My kiddos are older ( 2 in college & last one in highschool. Anxiety is real. In addition to Kesimpta, I take the lowest dose of Cymbalta for my anxiety. You are doing all the right things Lii!! Continue to try & keep doing the great things that relax & make you happy. Mindset is soooo important. Getting ready to head to Fl (hot). I ordered a cooling vest so thinking I will need it! Looking forward to spending time with my childhood girlfriend:) Stay strong & well. love from Colo
Thank you Colleen! I try my best and that’s all we can do. I agree with you.🙏🏼❤️ A cooling vest is that I thing? I had no idea! 🤯 Sounds like it could really help. You have to let me know!! I’m scared how I will handle summer this year. 😬I wish you the best time with your friend! I send you both love and can’t wait to hear about your adventures 😄🧡
You are too sweet. Thank you.🙏🏼🧡 I was updating on Instagram more.. it was hard for me to actually find a moment to edit while the kids were home for Easter Break. Next time I’ll make a community post and let you guys know. 😘 Thank you for your support and I send you all the love
Hi again Lii, well done! You did so great even tho you had a reaction xx Omg watching this was like having a flash back! Didn’t happen on my first one but did on the 2nd because they sped up the infusion from 30ml to 90ml and also started to feel dizzy! I would keep an eye on the machine next time and I won’t let them put it over 60. In regards to your previous comment in your other video Lii, I’m based in the UK but have a sister who lives in Spain. You must be getting a lot of vitamin D out there!! Again, so proud of how you carried yourself during the first round…. And you even had the energy to create a very impactful video out of such a surreal experience! True warrior 💪 I hope you’re feeling better in next few days xx sending you strength and please don’t hesitate to reach out. I’m due for the first full one end of the month so I’m also starting to feel bit nervous now. Currently experiencing “crap gap”!!! Might be an interesting topic for a video for people on Ocrevus? All the best xx
I love this comment! Thank you Antonia for your kind words.❤️ Yes the speed of the infusion could go as high as 180ml/h!! My body was freaking out at 90! 😂😅 so the second time as you will see in the next video we kept the sped at 90. Definitely communicate with your neurologist your concern. I hope you will keep us updated on how you get on with your next infusion! I will be thinking of you.❤️ Do explain about the “crap gap” it’s the first time I hear this term lol. Sounds interesting for sure. Where about a in Spain is your sister? Yes the sunshine is just wonderful. I struggle with the heat at times though. Much love xx
180ml/h whattttt?!? This is news to me so thanks for sharing! Omg, I would be on the floor passing out 😅. How are you feeling now after your next infusion? A little better I hope 🤞 So this so called “crap gap” ..... You know I heard this term being thrown around a bit before, but never really gave it too much thought. Then around a month ago I started to feel worse, started panicking thinking maybe I was having some kind of relapse and all of a sudden it dawned on me that it was this dreaded “crap gap”! In a nutshell what it is, is a few weeks leading up to your next infusion, you start feeling a temporary worsening of your symptoms as the medication is “wearing off” they say. So I’ve been feeling a little crummy, like a flu coming on, feeling weak and some brain fog….. Just not my regular self you know. I am now a little overdue for my next infusion. I’ve been chasing up the doctors to speed things along but there was a mix up 🙄…. Just waiting for the next infusion so I can get that Ocrevus boost of energy again and continue with normal life! If there is anything else you would like to know feel free to ask. Looking forward to your next video to see how you are getting on hun. All the best xx
Oh and one other lifesaving item to take to the next infusion would be one of this travel pillows that you get for the plane. I can literally sleep anywhere with that thing coupled with a cosy blanket 😊
You will be fine! ☺️I will keep you in my thoughts. Make sure to drink a lot of water before and during. Bring snacks and comfy clothes. Cozy socks was a must for me!😌🤣❤️
I had a similar experience with Rituxan infusion for my rrms. Feeling much better after 6 months on it though, hoping you do too! I’m set to get my next infusion in a couple of days, hoping the reaction might not happen again.
Hi Laura! That’s wonderful that you are feeling better on your medication. 😊 My neurologist told me that Ocrevus will not have come in to effect until after 6 months.. I wonder if it’s the same for Rituxan? How long usually do your infusion go on for? I pray for a safe and fast infusion with no reactions this time for you.🙏🏼🧡🎗 Stay strong and do let us know how you get on. Much love
I was ill and hospitalized for 11 days after. But after that all symptoms from the lumbar puncture went away!! Keep in mind that I have bad scoliosis and it was almost impossible to get any liquid out.. I don’t think you have to worry about having the same complications that I did. I’m sending you all the love and strength! ❤️ Have you had an MRI?
@@LiiBorossy yes I had multiple MRIs brain and spine and tons of blood work. I only had one small 3mm spot on my Brain scan. I had a repeat brain MRI a few weeks ago and no new spots and current spot is the same size. I did refuse contrast on all of my MRIs, because all of my symptoms started two weeks after I had a breast MRI with contrast for another issue. I’ve been having on and off symptoms since November 2022. The “attack“ that I got was full body, but mostly focused on my legs with a ton of tingling and burning that felt like I was walking on electrical wire for a full week. Then it started getting better, but has never fully gone away. I also had a lot of urination issues. I had to pee about every 15 minutes for a full week. That has since gone away. Anyways, they don’t know what I have. The neurologist said CIS. So they are getting a lumbar puncture to see if they find anything there.
If I were you I would definitely go ahead with the lumbar puncture to be sure! I’m sorry you are going trough this! ❤️ I know that the unknown is one of the hardest parts. You got this and I’m here for you.
Thank you all for your patience with how long it took for me to post this vlog. I had my second infusion today! And part 2 of this vlog will be up soon. 😊🧡🎗 Until then I send you all my love and strength across the globe!! 🙏🏼
Thanks for being honest. It’s hard not to stress about illnesses. I think that’s so adorable your dowton date with your dad. ♥That.
Thank you for your words. I hope by being honest I can help someone by sharing my story. I wish would have had someone to follow and watch that has walked this road before me. I think I would have found it helpful.
Yes it was wonderful having that moment with my dad. He wish he was more near and could help out more but he is giving much support from overseas.❤️
Have a wonderful day Alicia
Thank you so much ! Getting my first infusion in 3 weeks and I feel so stressed out. Watching your video made me realise I'm not alone in this.
Thank you, thank you, thank you !
You are never alone! You will be fine. Try to drink a lot of water the day before and during. Bring something to eat and cozy socks for comfort. Bring some kind of entertainment. You got this! ❤️ I have vlog of my previous infusions if you want to see how my experience was. Know that it get easier each time. We are here for you. Much love
Thank you so much. I will follow your advices and I hope everything will be fine. Thank you, you're doing so much for all of us. ❤
@@vendomanic you guys do a lot for me! Thank you
Lii- You my friend have the right mindset:) It's not saying its not scary at times with MS, but you & all of us will overcome. Definitely on the same wave length. My kiddos are older ( 2 in college & last one in highschool. Anxiety is real. In addition to Kesimpta, I take the lowest dose of Cymbalta for my anxiety. You are doing all the right things Lii!! Continue to try & keep doing the great things that relax & make you happy. Mindset is soooo important.
Getting ready to head to Fl (hot). I ordered a cooling vest so thinking I will need it! Looking forward to spending time with my childhood girlfriend:) Stay strong & well. love from Colo
Thank you Colleen! I try my best and that’s all we can do. I agree with you.🙏🏼❤️ A cooling vest is that I thing? I had no idea! 🤯 Sounds like it could really help. You have to let me know!! I’m scared how I will handle summer this year. 😬I wish you the best time with your friend! I send you both love and can’t wait to hear about your adventures 😄🧡
I have been checking…wondering how it went. That coffee looked amazing and your breakfast too!
You are too sweet. Thank you.🙏🏼🧡 I was updating on Instagram more.. it was hard for me to actually find a moment to edit while the kids were home for Easter Break. Next time I’ll make a community post and let you guys know. 😘 Thank you for your support and I send you all the love
Hi again Lii, well done! You did so great even tho you had a reaction xx Omg watching this was like having a flash back! Didn’t happen on my first one but did on the 2nd because they sped up the infusion from 30ml to 90ml and also started to feel dizzy! I would keep an eye on the machine next time and I won’t let them put it over 60. In regards to your previous comment in your other video Lii, I’m based in the UK but have a sister who lives in Spain. You must be getting a lot of vitamin D out there!! Again, so proud of how you carried yourself during the first round…. And you even had the energy to create a very impactful video out of such a surreal experience! True warrior 💪 I hope you’re feeling better in next few days xx sending you strength and please don’t hesitate to reach out. I’m due for the first full one end of the month so I’m also starting to feel bit nervous now. Currently experiencing “crap gap”!!! Might be an interesting topic for a video for people on Ocrevus? All the best xx
I love this comment! Thank you Antonia for your kind words.❤️ Yes the speed of the infusion could go as high as 180ml/h!! My body was freaking out at 90! 😂😅 so the second time as you will see in the next video we kept the sped at 90. Definitely communicate with your neurologist your concern. I hope you will keep us updated on how you get on with your next infusion! I will be thinking of you.❤️
Do explain about the “crap gap” it’s the first time I hear this term lol. Sounds interesting for sure. Where about a in Spain is your sister? Yes the sunshine is just wonderful. I struggle with the heat at times though.
Much love xx
180ml/h whattttt?!? This is news to me so thanks for sharing! Omg, I would be on the floor passing out 😅. How are you feeling now after your next infusion? A little better I hope 🤞 So this so called “crap gap” ..... You know I heard this term being thrown around a bit before, but never really gave it too much thought. Then around a month ago I started to feel worse, started panicking thinking maybe I was having some kind of relapse and all of a sudden it dawned on me that it was this dreaded “crap gap”! In a nutshell what it is, is a few weeks leading up to your next infusion, you start feeling a temporary worsening of your symptoms as the medication is “wearing off” they say. So I’ve been feeling a little crummy, like a flu coming on, feeling weak and some brain fog….. Just not my regular self you know. I am now a little overdue for my next infusion. I’ve been chasing up the doctors to speed things along but there was a mix up 🙄…. Just waiting for the next infusion so I can get that Ocrevus boost of energy again and continue with normal life! If there is anything else you would like to know feel free to ask. Looking forward to your next video to see how you are getting on hun. All the best xx
Oh and one other lifesaving item to take to the next infusion would be one of this travel pillows that you get for the plane. I can literally sleep anywhere with that thing coupled with a cosy blanket 😊
Thank You!
Thank you for being here, I appreciate it
Thank you. I will be receiving my first Ocrevus infusion in 3 weeks. 😬
You will be fine! ☺️I will keep you in my thoughts. Make sure to drink a lot of water before and during. Bring snacks and comfy clothes. Cozy socks was a must for me!😌🤣❤️
@@LiiBorossy thank you! 😊💖
I had a similar experience with Rituxan infusion for my rrms. Feeling much better after 6 months on it though, hoping you do too! I’m set to get my next infusion in a couple of days, hoping the reaction might not happen again.
Hope the best for you🧡
Hi Laura! That’s wonderful that you are feeling better on your medication. 😊 My neurologist told me that Ocrevus will not have come in to effect until after 6 months.. I wonder if it’s the same for Rituxan? How long usually do your infusion go on for? I pray for a safe and fast infusion with no reactions this time for you.🙏🏼🧡🎗 Stay strong and do let us know how you get on. Much love
I have my lumbar puncture June 8th. I’m really scared. What happened with your lumbar puncture complications?
I was ill and hospitalized for 11 days after. But after that all symptoms from the lumbar puncture went away!! Keep in mind that I have bad scoliosis and it was almost impossible to get any liquid out.. I don’t think you have to worry about having the same complications that I did. I’m sending you all the love and strength! ❤️ Have you had an MRI?
@@LiiBorossy yes I had multiple MRIs brain and spine and tons of blood work. I only had one small 3mm spot on my Brain scan. I had a repeat brain MRI a few weeks ago and no new spots and current spot is the same size. I did refuse contrast on all of my MRIs, because all of my symptoms started two weeks after I had a breast MRI with contrast for another issue. I’ve been having on and off symptoms since November 2022. The “attack“ that I got was full body, but mostly focused on my legs with a ton of tingling and burning that felt like I was walking on electrical wire for a full week. Then it started getting better, but has never fully gone away. I also had a lot of urination issues. I had to pee about every 15 minutes for a full week. That has since gone away. Anyways, they don’t know what I have. The neurologist said CIS. So they are getting a lumbar puncture to see if they find anything there.
If I were you I would definitely go ahead with the lumbar puncture to be sure! I’m sorry you are going trough this! ❤️ I know that the unknown is one of the hardest parts. You got this and I’m here for you.
@@LiiBorossy yes I am going to do the lumbar puncture for sure. Thanks for all your videos. They help so much. 💚
@@dermlover1 thank you for being here watching and sharing your story with me.