MRI RESULTS - IS OCREVUS WORKING? / NEW SYMPTOMS / LIVING WITH RELAPSING MULTIPLE SCLEROSIS
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- Опубликовано: 14 фев 2024
- In today's video we get my MRI results and I give you a full Multiple Sclerosis update and more. A conversation with my neurologist. Deteriorating fast because of stress. His recommendations for me.
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Thank you for being here and sharing your stories with me ❤️
So glad to hear, no new lesions.
I'm glad that speaking to the vlog helps. I am at the start of my MS journey and finding the energy to start vlogging.
I’m sending you all the strength! It’s a very difficult time when you first get diagnosed. So much unknowns. Much love 💕
I found your channel last year when I was told that I might have MS. I am the kind of person who wants all the information I can get, so I'm prepared for what is coming. Watching your videos while I wait for a diagnosis has helped me find a sense of calm and peace about what may be in my future. Thank you for giving me some inspiration on how to handle MS! Sending lots of hugs your way!
I love this comment!! Thank you dear. This is why I share. I wish you all the best and I hope to hear from you soon. Any idea of when you might get some answers? Where are you currently, in the process of testing or just waiting for the doctors to get back to you? Sending you all the love and strength ❤️
@@LiiBorossy LOL Well it's a long story, I'll try to keep it as short as I can. Last May, my eye doctor noticed damage to my optic nerve. She sent me to a specialist who says the damage matches what he sees in his MS patients. Since I have, without realizing it, MS symptoms, he ordered an MRI and Lumbar Puncture. When both came back normal, he sent me to a neurologist. Despite having a long list of MS symptoms, that are getting worse, he dismissed everything saying all I have are migraines. He didn't do any testing (like checking my balance or strength), just asked me some questions but ignored my answers. Both my primary care doctor and my eye doctor were shocked by his treatment and assessment, to say the least. The symptoms I have are clearly neurological, even my PCP said migraines can't be the cause of all of them. LOL I lost my balance while standing still, no migraine was involved, for example. Anyway, I'm now waiting for a second referral to get a second opinion.
Hi Lii, I am an older person going through the diagnosis phase of a neurological disorder, and I find your videos helpful and informative so thanks. @ Denton1 made a comment about swimming and I wanted to say that as well, because swimming has given me the ability to do more each day. The first day I swam it was challenging and I was very tired... but I get a bit better each time and the benefits seem to linger a bit linger which is a nice break for some symptoms I have in my arms. Hang in there and try to remain hopeful. Focus on the things in your life you can and would like to do, and do your best to meditate or find ways to seek calmness. You are in my prayers... Thanks again for sharing.
Thank you for your kind words! I pray for you during this phase of getting your diagnosis. The unknown is sometimes the worst part. 🙏🏼 Swimming use to be a big part of my life growing up. My grandpa who now is 95 years old was a professional swimmer who would do yearly competitions until he was 90! Keep doing it my friend. ☀️
And I shall pray that you learn how to emotionally cope with all you face, and that your stress levels reduce in time. Do everything you can to combat the illness, and maybe remission is just around the corner. Thanks for replying you are very kind.
@@user-pi9cq6bp5z thank you 🙏🏼☺️
I also have RRMS. I get hives too with stress. It's awful! I'm also a highly sensitive stressed out person, wish it was easier for us to just not be that way. Still good news that you have no new lesions! I need to get back to the basics too, we can do it one step at a time. Hugs!
Let’s do it together!!! 💪🏼 we can do it! 🥰 Just one step at the time. Xx
Allergy to stress is so true for me.
Hi! Yes most definitely. After loosing my grandma and then finding our neighbor who had fallen in his house who also ended up passing away 💔 and then traveling alone with the kids to go to the funeral.. going home and have a lot to do at work, was probably a bit too much for me. My body shut down and I’m currently in the hospital. I keep you guys updated. How are you my dear? Much love ❤️
Thanks for sharing your experience, it makes me feel like I’m not alone! I was diagnosed with RRMS in Oct 2021 and have been on Rituximab (very similar to Ocrevus) since Jan 2022. Lots of ups and downs symptom wise but my DMT seems to be working as I don’t have any new lesions. Thanks again for sharing!!
Sounds very similar to me. ☺️ How are for feeling day to day? Are you coping well? I hope you are having a good weekend. Much love ☀️
@@LiiBorossy I’ve been struggling for the past couple weeks with that I think is chronic fatigue….a fun new experience that I’m not a fan of 😩 I’ve also been dealing with some spacticity issues in my legs but it’s not debilitating or anything. My neuro just started me on a muscle relaxer so we will see how it goes. I have to say my anxiety around all of my MS stuff is probably the worst part of my experience so far….never knowing what to expect or if what I’m feeling is MS-related or something else. Hope you are doing well! Have a nice weekend!
@@mdlmomo3684 my dear I know exactly what you mean! I 100% relate to what you said. I have tried soooooo many medications at this point for managing my symptoms but you are probably not going to like me for saying this but the only thing I found to be somewhat effective is exercise! 😱 it will not take away my pain or spasticity but my fatigue is improving. I do feel like I can manage my other symptoms better though. One day at the time my friend. Take care ☀️
Hi Lii! You're beautiful inside and out and so strong! I am also so impressed with your hubby! I don't get much support from mine so I really appreciate him!
Stress is the worst. I try to have one moment during the day for me just to look forward to and clear my head. It might just be coffee and watching a video - nothing extravagant. I also wanted to recommend a channel "GrowwithJo". I used to exercise heavily at a gym and I miss it but her videos are just about all I can manage now. It makes me feel better and it is easier with children to exercise at home - sometimes they'll join in with me!
And it is okay to have a pity party sometimes!
Love from Lee in CT, USA🧡
Hi Lee! How are you my friend? ☺️ I’m sorry you don’t feel like you get enough support. Have you tried talking to him about it?
You are so right. Alone time to do what you want in that moment is very important as well for our mental health. I’ll definitely check out GrowwithJo 🤗
How fun that your kids joins you. 🥰
Take care dear xx 😘
Hi Lii, I just watched your video and have watched them all. I was diagnosed with RA and neuropathy in 2020. It’s been just an emotional roller coaster and I heard that it takes 2 years to get comfortable with understanding of all the in and outs of these diseases. I just had my 3rd MRI to check for MS. You’re doing dealing with everything. Thanks for the updates!!
Gosh I’m sorry for what you are going through. It saddens me that so many of you guys watching me are struggling too and it breaks me heart. But thank you for being here and for sharing your thoughts and stories with me. It means a lot. ❤️ I keep you in my thoughts and please keep us updated on how you are doing too. Sending you all the love
Have you looked into hsct?
It is always good to hear from you, Lii. Thanks for the update. I learn a lot from your videos. I am very interested in the infusions, and the part they play in your treatment. I didn't 'realise that they are mainly preventative. Keeping a journal has been found to be roughly as effective as therapy, so do carry on making your videos. Something that I am interested in at the moment is the role of inflammation in Ms. There is a lot of research being done in this area. Stress makes everything worse. Maybe a Health Coach, rather than a therapist, would be worth considering. Unfortunately, a lot of people who advertise themselves as such, lack training. The magic word is 'Support.' The more support you have, the better life will be.
Love to all your family from Colin in Edinburgh ❤
Thank you my friend! If there is anything specific you want me to cover in one of my videos just let me know. 🙂 A diary is not a bad idea! I have been thinking of getting a gratitude journal… maybe I should do that as a first step.
Sending you and your family our love and I wish you a wonderful Sunday! ☀️
No New Lesions 🎉 😊 I love it when the Mri report says that. 😊 So true about the stress. When you find a place of peace, you will notice a reduction in some symptoms, well I did. So I guess that is kind of a blanket statement but, I see personally the small changes. Sleep!! Make sure you are getting enough rest. I feel like stress overloads the few pathways that are left in tact.
The itching, I get a patch that starts around my chest, up through my neck and up to my hairline behind my ear. Totally bizarre but knowing that those things are my body's way of letting me know to settle down. I never thought I had anxiety but along with antidepressants, anxiety medicine has helped tremendously. My heart hurts for you . I hope that you find a place of peace and health. ❤
We sound pretty similar you and me. ☺️ Thank you for sharing with me. I love when you guys tell me about what has worked for you. Sleep has been a real struggle ever since my youngest was born. I haven’t slept well for the past 3,5 years. 🤯 I recently found a supplement that I’ve been trying out and it seams to work! 😱🙏🏼❤️ Sending you all the love and I wish you a wonderful weekend. ☀️
@@LiiBorossy and let me tell you, a 20 minute nap can work miracles. Before I was able to find some peace and good sleep, I allowed myself a 20 minute nap before 2 or 3. Set a timer and if you can't wake up, you NEED it. If I felt really tired, 45 minutes, a whole sleep cycle. Sounds like your honey is now in a place of understanding. Just remember he probably isn't a mindreader. I spent a lot of time feeling like I weak for telling my honey what I needed and not understanding why he just didn't know. Communication helps. Its awesome that he went to your appointment and learned about it.anywho, naps 😴 they can be helpful!!
@@brandipenman9137 absolutely! You are so right. And yes he has really stepped up lately. And I feel like he has more patience as well.🤗🙏🏼
Take cold shower instead of hot water shower.
Wow que buen español hablas!
¡Gracias! ☺️
It is hard to understand. It's incomprehensible. I'm fine but now I'm worse
Yes! From a moment to the next we can feel completely different. 🤯