My Medicine Stopped Working | My MS Story
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- เผยแพร่เมื่อ 12 มิ.ย. 2024
- Thank you for listening to my MS story.
If you missed part one here's the link:
• Diagnosed with Multipl...
MS videos playlist:
• MS Videos
Resources:
MS Society:
www.nationalmssociety.org/
Great Summary of what MS is:
www.healthline.com/health/mul...
Music:
♫ Music by Goosetaf - Bumblebee - thmatc.co/?l=BBDF70C7
♫ Music by Ashes to Amber - Arizona Thunder - thmatc.co/?l=1E00CBBE
▬ Contents of this video ▬▬▬▬▬▬▬▬▬▬
0:00 - Intro
0:28 - COVID
0:58 - Getting Ready
2:44 - MRI
3:40 - They found more lesions
5:32 - Meeting with my Neurologist
9:35 - My Thoughts
9:44 - Having more than one doctor
10:40 - Is my medicine failing?
11:01 - When doctors don't agree
12:45 - Deciding what's best for me
13:10 - What is the right thing to do?
14:28 - Getting my Infusion
14:42 - My Plan
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I have seen your videos about possibly being in a wheelchair. Just to let you know I am 74 and not in a wheelchair. I had the same feelings as you when I was first diagnosed. I use a Walker but drive and do very well. Good luck and keep on meds, exercise and eat properly.
How to did you do this
I always get a warm blanket, pillow and ear plugs
As someone who has been battling this dragon for more years than I care to count, my only advice is keep your mind active,keep your vitamin levels up and lather that beautiful head of hair with as much laughter as you can stand then rinse and repeat daily.😀
I wish you well!
I'm sorry about you getting the new lesions. Are you feeling better at all now?
You and your dogs are adorable. It was like they came to give you love and say hi to us. Much love and prayer.
When you started crying I started crying. Gotta stay hopeful and healthy. And pray the meds help. 🙏 good luck!
Another MS warrior like you🙋♀️💙🌻
Sorry to hear you have more activity 😔 keep going, don’t give up. We’re all here with you 🙏🏻🧡
Oh Sarah, I’m sorry you’ve gotten new lesions. It’s so scary. I was blessed to have no new lesions the first year of starting Mavenclad (cladrabine). I’m due to have my 2nd yr MRI and I’m not as confident. The neurologist lowered my dose of Mavenclad because the lymphocytes took longer than expected to bounce back last time, but I saw in my last blood test that my lymphocytes aren’t anywhere near as low as they were with the first course. I’ve had increased symptoms…so I’m bracing myself for the possibility of new lesions.
Random note; I’m claustrophobic, so when I have my MRI’s I have to have a hefty dose of diazepam…and I still grasp the panic button ready to push it like my life depends on it 😂
We got this, the treatments are getting better and better. Had we been born decades earlier, things would be very different for the future of those of us with MS than it is now. Look after yourself, allow yourself to be pissed off sometimes, but keep moving forward (I’m telling myself this as much as I’m telling you). ❤
Hey Sarah, looks like we have had a very similar MS journey. I had two conflicting neurologists with one saying Ocrevus wasn’t working and I’d need a stem cell transplant, and the other saying despite a couple new lesions I’m doing well. New lesions doesn’t mean it’s not working or you’re doing bad. It’s important to take a holistic approach. How you are feeling is more important to quality of life than some spots on an MRI. Stay strong. Keep up the good work.
Thanks for taking us with you. You are doing so well. We’re all here with you 🧡
Hi, Sarah!
Me too was diagnosed at 24 (at first with CIS, and MS a year later due to control MRI). My first drug is Rebif, and my latest MRI showed 3 new lesions. I got those news about 20 days ago, and now I'm finding your video! Everything feels so familiar. Especially reading those MRI results. Like I am fine and happy, believing my therapy works, but suddenly I'm reading this scary scientific threat which I can't do anything about.
Actually Rebif wasn't really expected to be my 'drug for a lifetime' (it is a 1st line therapy, and my initial attack was severe), but I had some hopes. I'm switching to cladribine (Mavenclad) now. Had to chose between cladribine and ocrelizimab. I'm not worried as much now as I was at first (although I'm still waiting for 1st dose). Cladribine do kill more cell types than ocrelizumab, but it is discontinious therapy (you take it 4 months in 2 years and it keeps some folks safe for years, maybe forever, it's relativly new drug so the evidence is still to come; but ofcourse It's not rule for everyone), so the cells can return to pretty normal levels lately. With ocrelizumab you always keep them lower. I'm not questioning your desition, just saying something I wish I've knew.
Hope that reguralry taking Ocrevus will keep you safe and away from any new lesion ever, just as I hope that Mavenclad will be right for me!
With MS we are always forced to make desitions never knowing if it will turn out right. I agree that's taugh.
Also I want to share with you that I found folks in MS community who switched DMTs up to 5 or 6 times (and they survived to talk about it. :)
That fact relaxed me a bit, because I'm just as worried as you are. We are young and there are new lesions every now and than, medication is agresive... Really makes us wonder about some hard future. But hopefully there will be safer, more effective drugs soon, and this ones will keep us going as long as we need!
P.S. It's really brave to record video like this. Hope you will continue to post from time to time as I'd like to stay in contact with you. Wish you all the best!
I'm glad you're posting an update today. I hope there are many more to come. Cheers.
Just wanted to say your videos came at the right time. I was diagnosed back in April and I’m about to start medication (Probably Ocrevus). I’m 32 and this has been a big change for sure. Your videos have been tough to watch at times, but have been enlightening and helpful. Praying for you through this journey. Medicine has come a long way and God has a plan. My goal is to turn this into a positive and it seems like you’ve done that as well!
hi Jordon! me too! 32, ocrevus, diagnosed april of this year. nice to "meet" you :)
@@_alexandraraye sorry to hear about your diagnosis, but praying for you! How has Ocrevus been for you so far? Nice to “meet” you as well!
So happy to see you guys “meeting” in the comments! Wishing you the best!
@@Kingrichardgannon all good so far but i've only had my first two half doses. i had a scary infusion reaction but my last MRI shows no disease progression (so far lol).
Hello Jordon- I was also diagnosed this year in March. I will be 55 in a few days.. funny I feel like I am 30. I am on Kesimpta and feel really good most days. Tired is a common theme so get lots of rest and don't over due it! I also love yoga! Still riding my road bike in the mountains of Colo. Hope your treatment goes well. Best, Colleen
Sarah you're so well spoken & knowledgable about MS .. glad to see your update, wish it was completely positive though. keep your head up
Great update. I'm impressed by the way you're working out these choices about your medicines. I hadn't understood anything about these issues before. The way you find fun things to do is cool. You're often providing gentle reminders to have a little fun no matter what's going on. Nice job!
Thanks Jeffrey :)
You're awesome. Don't get discouraged. You and Alexandra keep me going. Both of you guys are amazing and we need you.
Three hours?! WHY?? I just had a brain MRI yesterday to check for lesions to see if I have MS. It was like 20 minutes. Can you tell me why it takes 3 hours? That scares the crap out of me! I nearly had a panic attack before we even got started yesterday. I had to have him take that face antenna off of me 3 times before I was finally able to breath and go in.
The report came over my app just after midnight and it was positive for an MS relapse it said. The radiologist thought I had been previously diagnosed I guess because I am 53 (more like 43 in spirit, lol) but I remember symptoms going all the way back as young as 10 with balance including falling off a chair I was just sitting on, like falling over. Then at 16 I think it was when 2 of my toes on each feet started going numb just from walking or exercising. I would also trip over literally nothing. It of course got way worse from there but no one cared.
heya! super late response but just thought I'd chime in about the mri lengths for you any anyone else curious. I think they vary in time largely due to the mri machine strength and how many specific types of images they take too. I've had my brain ones take over an hour at one location with a 1.5T machine running more image types and now they take 15-20 minutes in a 3T machine with more specific image types.
Wondering how you are doing. Hope you will update when you are ready. I'm not coping with MS, but I appreciate your wonderful presence and welcome any news.
Quality of life, that’s what it’s all about. I was diagnosed in 2020 and it’s been a day to day struggle.my heart goes out to you, this disease is awful even if everyone’s symptoms are different. You’re videos are very informative and funny too. I started posting videos on my channel about MS, the more we can be seen the better. Stay strong!
Hey sara u are very strong girl...i know its natural to be scared at this time...but don't know why i feel things will go well for you...miraculously healing is possible...medicines start to work when no one hopes it will work....next scan in December will bring joy for you...and will wait for that time inshallah you will be ok...prayers from bottom of my heart ...u are strong...plz stay strong...medical science is not GOD ..trust me miracles happen for those who believe in it...just cont ur meds ..it ll work eventually
Thanks you Sara for sharing and for being such an inspiration ❤.
Wishing you well and thanks again for sharing .
You are such an inspiration !!!
Thanks for another informative video. Showing your actual appointments and explaining helps so much! I’m sorry about the news but I’ve watched all of your videos and you’re strong as anything. You’ll overcome! ❤️❤️
Yay!!! You’re back!!! 😍😍😍😍
Thank you for sharing.
God bless.
🌼
I wanted to thank you for sharing your story and this especially vulnerable moment. Having a condition like MS can be challenging, scary, and exhausting. Despite all of that, you are handling it with grace, patience, wisdom, and appreciation. I think it is truly remarkable how you are handling your disease, considering how active it has been. As someone who was diagnosed with MS a year and a half ago and has probably had it undiagnosed for ~20 years, you are an inspiration. I wish always to be as positive and accepting as you. I hope Ocrevus ends up working our for you in the long run!
Hey Sarah,
A long time without an update. I was diagnosed last year and your videos have been so helpfull to me. I hope you're doing well and wish to hear more about you :)
Hope you get better soon ❤️
hello! i have watched a few of your videos now and this one really hit me hard because i felt the same when i saw my lesions and i was so shockked by how aggressive my MS was. I had my first 5 day round of alemtuzumab in december and it is a serious drug but its helped me so much, might seem scary but i promise it isnt as bad as I thought it would be. it affects everyone differently and you should absolutely think about what is best for you but alemtuzumab is not worse than my MS itself and i would encourage you to look into it, know whats involved so you are confident to make the choice which is what i did. im happy to chat through with you my experience, whats involved etc. i will keep everything crossed that you have nonew lesions in december, best of luck and look after yourself x
Hope you are feeling well Sarah :) MS really sucks - I also had a new lesion last MRI I had - hoping that Ocrevus works its magic for you over the next couple months :)
Sorry to hear young lady. My wife is struggling with ms. I recently came across stuff on Facebook saying parasites might be the culprit for lots of these odd diseases. Just starting to look into them. It’s sounds crazy but we are looking into anything at this point. Good luck. Hope you find some peace.
I can relate - Tecfidera had no effect on lesion number for me. Moved to Ocrivus earlier this year, and time will tell! You are still stunning Sarah!
Hello Kate, thank you for sharing your experience. Let me echo what others have said, your story has given me inspiration. I was diagnosed with ppms in November 2021, and I am currently taking the same medication as you since March 2022. I look forward to hearing more about this very interesting journey that we are on. Stay strong.
Glad to hear you’re feeling better after your infusion. It certainly was disheartening when the doctors found new lesions even after you entered infusion treatment. I’ve been following you since the beginning. My brother had MS and was diagnosed at 32 but at that time these new “miracle” meds were not available. Looking forward to your next MRI. Stay healthy!
Thanks for your update! Another You Tuber said she was told it can take up to three full doses to see the benefits/ whether Iceevus works - so a year and a half. I’d give it time - I’m looking forward to starting this treatment.
Hi I was diagnosed in may so only starting out on my journey, I am taking kesimpta since June, thanks for sharing your story
thank you, Sarah Kate
Sarah, I’m on Ocrevus this last session was around the end of September. My neurologist, once I pass 6 month, blood test to monitor B cells. I actually went up to 9 months before I was due. Which is the best so far. I’ve had MS since 2002.
Big hugs ❤
Hi beautiful I just ran into your videos and I wanted to tell you that your videos have helped me a lot. 😭❤️ I started with a few similar symptoms earlier this year and this month I started going to neurologist. tomorrow I have my first MRI and I'm hoping for answers whether they're good or bad I just want to know already. 🤞 Watching you through the ups and downs it takes amazing courage and I want you to know that these videos your documenting are truly helping people. I'm happy you are feeling better and you give me hope ❤️
Thank you for telling me this, truly. I wish you the best ♥️
I had new lesions during my first year as well. I was on Avonex and then I switched to Tysabri. I've been very lucky to have no new lesions for about 16 years. I highly recommend going up to the next tier of effectiveness in treatment. I really think that switch to Tysabri and infusion treatments has kept me at a moderate level of symptoms. I was diagnosed in 2005 when I was 24. I am now at 18 years.
thank you so much for sharing this update. you've got this girl!! im also on ocrevus and have sensory deficits...and the same exact sweating thing you mentioned. wishing you all the best and sending you a big ol hug!!
Wishing the best for you too Alexandra! :)
OMG! I just watched your last video and commented.
@@Drennan90 thanks Drennan, you helped me to find her channel! :)
@@Drennan90 hi drennan! really appreciate that :)
So sorry, sweetheart. My son-in-law was diagnosed 3 years ago at 47. He has had 6 infusions of Ocrevus. It is not working. He has trouble walking and falls alot. MS really stinks. God bless you honey.🙏🙏💙💙🙏🙏
Sarah dont stop trying and trying. I am in the clinical trial for Fenebrutinib or Ocrevus. I don't know what I am taking or it's both placebo and the doctor don't know as well.thThat whats happening when you are taking part in a clinical trial, maybe you know all of that.But when I started taking Ocrevus injection one month ago, some days after I had some spots on my hand that I made the enjection. That's a good sign.It makes me believe that I am taking something and it might be Ocrevus.Plus I had 3 times with flu symptoms and the other days gone away. These are signs the I might not taking the placebo. I wish your therapy will go well... Don't stop trying. Greetings from Greece.
I’m glad your doing ok. They left my I V in after my MRI this year. I had a heck of a time getting dressed with that thing sticking out my arm. I showed it to the nurse and he said. “Oops, I sometimes forget to take that out. I’m sorry.”
😂😂😂
I just came across your channel today and I see that you are suffering so much at such a young age and I was wondering if you have tried addressing your illness with your diet ( I don't know if you made any videos about this). I watched another TH-camr , Cabana Chronicles and she has gotten very good results on the carnivore diet. I hope this helps and may God bless you.
I’m fearing a type 2 diabetes diagnosis, but your story and all others with MS and other chronic illnesses make me think to Mat Embry who’s lived virtually symptom free of MS with his diet. The Best Bet Diet. Keep going.
Of course you go for what's the best for you
I would say wait till your next MRI now if everything is stable you stay on your med if there is still disease activity you should consider going for lemtrada or mavenclad .
Wish you the best .
Hi Sarah! Thank you for sharing your story with us. Do you think you will be posting any new videos?
I should be posting one at the end of this month!
@@sarahkate717 I am looking forward to it:)
Wish I didnt knew how this feels like ... but I do.
I have to say that I'm impressed your hospital allowed you to have your MRI even with COVID. My hospital immediately cancels our appointments if we even have any cold/flu symptoms let alone an actual COVID positive test. Funny how each hospital is so different. I agree - it's a hospital. It's where you go if you're sick. Shouldn't be a problem. I'm also surprised that your brain-only MRI took so long. Mine last maybe 1/2 hr or so. Only maybe 5-10 minutes long if you take contrast as well. We also don't need to change into a hospital gown as long as we don't wear anything with metal. That speeds it up too.
I also have MS and I would encourage you to try Lemtrada or another medication your neurologist suggests. All of our medications we currently have only PREVENT new damage. If you’re on a DMT and you have break through disease, the drug isn’t working.
You might be fine now but any new damage is irreversible. I personally disagree with the reactive approach of “wait and see if any new symptoms emerge before we try a new DMT”
Our disease is trying to kill us (and in turn itself lmao). Autoimmune diseases are as serious as they come and I would highly encourage you to reconsider. At the end of the day however it’s your body, so regardless of if you change treatment or not, do what you feel is best. Stay strong~ 💛
Did you try Lemtrada? How did it go for you? Hope you're doing well 🤍
Have you heard about keto improving ms symptoms. I know that the Ketogenic diet is helping people with auto immune diseases. I suggest watching diet doctor on TH-cam.
ughh you are soo pretty
Hello, thank you for sharing your story with us. I would like to ask how I can reach you for business inquiries?
You should ask your doctor about creatine, Blessed Be.
Hey Sarah! So did they make you do an mri right before you started your ocrevus when you had that 2 month gap of being diagnosed and starting the medicine?
Yes!
I have my MRI this month. My mobility has become worse for around 2 years. I have to walk around with a cane which is shite.
❤️❤️❤️❤️
How long did your vision problem last ?
You are so beautiful and I hate this for you. I feel like I may have MS but can't see a neuro until January
I know how you feel 😕
My brain mri was ok but spine I have 2, 3 new lesions 😢
I cried as well, I didn't expect any new lesions, thought Ocrevus was ok for me...
what type of MS have you been diagnoised with?
Please Kate come back, it’s been months! Just don’t get the shingles. Gileneneya, and ocrevus both lower your resistance to the shingles This will cripple you. It’s been 10 years of post shingles pain for me. Get the shingles vaccination. Please.Praying for you Kate.
How hard is it to get a diagnosed
U have strength to do your hair?
My friend’s dad got lesions in the brain after Covid. He is slowly recovering. So other things happen.
I don’t know if you check these messages but I just recently made a similar decision to not engage in treatment more harmful than the illness. I hope you are doing well. 🙂
I hope you are doing well!
For years after I was diagnosed.. every MRI showed progression from a “Oh, there’s more white matter.” I was asked if I would do novantrone and something inside of me(a very peaceful feeling) well, I’ll just that I’m religious and have been since young. Eventually it all stopped. Now like you when I was diagnosed the amount of lesions that were present 16 years ago when officially diagnosed. I get upset just as you and in general in the medical world when I hear something that I don’t want to hear. Find that positive you inside you. It’ll change how you think with having MS.
you should try the wahls protocol diet,god bless you
Just bought her book, her story is amazing!
WHY DO YOU HAVE TO WAIT ?!?!? MAKES ME SO MAD
Doctor Eric Berg you tube has important information on MS rebuilding mylin sheath
Have you ever tried low carb diet or vit B12? might help reduce symptoms.
Arugula salads . And Juicing .
You're so beautiful and bright I'm so inspired by you ! My dad has had massive success with alemtuzumab (lemtrada).I hope you find a treatment that works really well for you ❤️
Hello there. I also have multiple sclerosis. Diagnosed January 2020 with first symptoms sometime in 2017. Just got out of the hospital for my first relapse since diagnosis. One thoracic cord lesion. I know a lot about this disease and can give you some good advice regarding the things you doctor recommended especially about the medications. I personally don’t think you should abandon the ocrevus just yet. It’s only been a year right? Doesn’t necessarily mean that you meds aren’t working. It could mean that they just didn’t have time to fully kick in.
Do you have Instagram or anything?
Hey girl ! You are so strong ! Do you have an instigram or fb ? I would like to reach out to you about somethings u talked about in private
☮️🙏🫂💐 I hope you are doing well.