My MS Story: Come Get Treated with Me
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- čas přidán 14. 07. 2024
- Recently I've gotten a lot of questions about what treatment I'm on and what it's like to be treated for multiple sclerosis. In this video, I show you what it's like while I receive my medication, get an updated MRI, and talk with my neurologist. Thanks for watching :)
If you missed my other MS videos, here's the link:
• Diagnosed with Multipl...
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 frumhere, kevatta - warm feeling - thmatc.co/?l=E11E4F48
♫ Music by Naomi - Osaka - thmatc.co/?l=84A7DECF
♫ Music by frumhere, kevatta - summer nights - thmatc.co/?l=57D1381F
▬ Contents of this video ▬▬▬▬▬▬▬▬▬▬
0:00 - My medication/Why I'm taking it
2:36 - Getting my Infusion
3:47 - How I feel after my infusion
4:56 - Going to get my MRI
5:37 - How I feel after my MRI
6:33 - Meeting with my Neurologist
7:48 - Is treatment right for you?
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Nice video. I can only imagine the effort it takes to film all of this and edit it together. I hope you continue to do well.
Im so grateful to you. Thank u for these videos.
I’m in the beginning of it all, with numbness from the neck Down.
That's fantastic! I just started on Tysabri this last Friday. So far it seems to be helping at least with the fatigue. I still deal with a lot of equilibrium issues which I feel are going to be with me for awhile. My diagnosis is still new my first attack was about 6 weeks. But at least the fatigue is doing better. My 4 year old and almost 2 year old don't give a rats boooty hole that I have MS so I will take what I can get 🤦♀️😜
😅🤣😅🤣 my 15 year old is about the same on not giving a sh!7.
Hahahaha! Freaking kids! Let me tell you!I'm not looking forward to looking forward to that stage!🤦♀️😜🤣
I was diagnosed with MS just 3 weeks ago and have severe spasticity & pain in my legs, so it's really encouraging to me to see how the infusion has helped you! Thanks for sharing- glad you're doing better!
Hiiii, I hope your infusions are helping 🙏🏽. I have a question because I’m having so many symptoms and I’m finally getting an MRI & EMG done. How long did all of the testing take for you to receive your diagnosis?
WOOOOO!!!! That is FANTASTIC news and truly made my day! I’m so happy for you! Keep kicking it’s butt! Love you forever girl ❣️
You’re beautiful and so calming in your sharing of information. Thank you for giving of your time and energy. My wish for you is continued improvement in your health ❤️
Okay this video is beyond amazing! Thank you for showing us detail.
Do more of these doctors appointments videos!
Especially when you get a neuro exam. I think most are curious as to what happens and what tests are done!
You’re absolutely beautiful and amazing thank you!!! ❤️❤️
Very informative. Glad you are having relief from the infusion.
"my beautiful uncle john's house... the house is beautiful. so is my uncle john, he's a beautiful man" lmaoo!
Your Awesome and I'm thankful I found your vlog. You give me a new found hope/motivation. God Bless you.
Love your videos! I just got diagnosed and your video really helps.
its great that the meds are making you feel so much better. i am also on monthly immunosuppressant infusions which isnt fun but helps me soooo much. (much diffrent issue). stay healthy!!
I'm happy to hear that your medication is helping you, too! We got this, Alisha!
You are so adorable, i wish you all the best in life and the treatment just works fine for you
I’m glad you showed the MRI, I have been studying mine because the doctor never said a word about it and I’m trying to see if there are lesions, the doctor said it was totally fine but there is very bright white matter, it’s so confusing but I’m glad I saw yours and what to look for now
Sarah Kate- you are so courageous & the very bravest to share your journey with us! I am so grateful to hear about the steps & procedures. I have similar symptoms & heading for another MRI and brain biopsy Dec 13th. It all seems less scary because of you:) Best from CO
This message made me smile, thank you 💕
“I’m about to devour this like my immune system does my mylon” lmao you’re hilarious I love you so much!
I’m glad you’re feeling good so far! I cried when you said you had no active lesions. I’m sending good vibes your way 💕
Thank you Maddie ❤️
Hi I got diagnosed back last March too I’ve seen a few of your videos now. I myself haven’t got round to making a video of my story. You have a nice bubbly attitude towards this journey 🙂
I’m on Kesimpta and have to take one auto inject pen once a month. I won’t let the MS stop me from taking photos and however bad I feel.
Stay strong 💪🏼 warrior
Hello! I came across your videos today while searching about MS (I haven't been diagnosed but I am kind of sure I have it, waiting on my MRI for Oct 29)
I just wanted to say I adore your videos and you! You are such a light and you seem to have taken all of this so well and still have humor about it and I hope to be that way too if I do end up having MS. I look forward to more updates and I hope you are doing well!
Good luck on your upcoming MRI. I wish you all the best, thank you for your kind comments they made my day :)
@@sarahkate717 Thank you so much!! This made my day :)
I'm currently in an Ocrevus trial. Things are going well so far. Good luck with everything!
You're. Wonderful. Think. You're. Positive. Attitude. Is. A lesson. To. Us. All
hey bro, its been 2 years, how is it going now with ocrevus? is everything ok? i also need to start with ocrevus and i was curious how u experienced it
@@jxf7 Hi there, everything is going great. My MRIs have been stable, no new lesions or relapses. The only thing i can think of thats negative would be my energy levels compared to prior diagnosis. Overall, I am well and happy!
@@Thisbook2022 Thank God, thank you for your response
@jxf7 best wishes my friend
I have been taking Copaxone since Sept 2019. I don't feel it is doing its job very well since I've acquired new lesions in brain stem/neck and mid spine. I'm just "shopping around" (I call it lol) and seeing pros and cons of each. But, like you said, my MS is not your MS. No one has to twin diagnosis of another person's MS. Thank you for sharing your experiences and thoughts. Take care and I'll see you on the next video that you do kindly share. 😊🤗🙏💯
Good luck Sarah
Thanks for sharing your experiences with us. I was just diagnosed with MS several weeks ago after having optic neuritis and everything is so overwhelming right now. I’m still having to do more blood work and another MRI Of my spine and neck at the end of the month (already had my brain MRI) before determining what treatment to start. My neurologist st this point is leaning towardI rituximab infusions so I’ve been researching that. Watching you do get infusion was really helpful for me and makes me feel a little less scared about what’s coming up. Thanks again 💜
Everything is going to be okay ❤️ best of luck to you
@@sarahkate717 thank you 💜
sarah, you would be able to live a normal life for ever, like me and the rest of us. my love is with u
Great video! A True #MSWarrior. You're so beautiful. Wishing you the best on your journey.
I had the 2nd half of the infusion last week. It took around 3 hours.
The 1st half felt like a whole lifetime. It took around 8 hours.
The 2nd whole infusion is 6 months from now. I’m packing my camping gear for it :D
Was diagnosed 2 weeks ago, it's been a crazy 2 weeks and rollercoaster of emotion. Been binge reading articles and googling - also interested in taking Ocrevus as a treatment option. Glad you're doing better :)
Hey, how are you doing now?
@@jxf7 hey there, sadly my initial attack has left me blind in one eye permanently. Optic nerve has been completely destroyed :/ Was sadly in the unlucky 5% of patients who experience that. Was a rough first couple of months after diagnosis but feeling better now luckily. Came as a shock as i had zero symptoms whatsoever prior to my first attack and am almost 30. I now believe covid may have triggered my first relapse / developing ms potentially. I had quite a bad covid infection 3-4 weeks prior to my first attack. Currently on medication though (tecfidera/vumerity) and have luckily not had a new relapse since however it is still early days post diagnosis to see how active this may be/become. Hope you are also doing well and thank you for asking :)
@@__Wanderer thanks for the response, glad you have not had any more relapses since then. Did you stop using ocrevus and why? Is the medication ur getting now better for u? Im curious since i need to start soon with ocrevus too
@@jxf7Since I am currently in the Netherlands the Dr / system doesn't allow me to use Ocrevus as a first line treatment... which I still find insane. I would really prefer to take ocrevus!! It has shown to work really well for many people with manageable symptoms for most people. Also the treatment every 6 months is quite nice. However, I am allowed to take something in the middle - when considering the side effects tecfidera seemed to be quite reasonable compared to others like mavenclad. I have to take 2 pills twice a day, gets a bit annoying after a year xD I have heard many good things about ocrevus and will take it as soon as I have the chance :) Wishing you all the best - ocrevus will hopefully stop MS in its tracks :)
Got my first dose of Ocrevus today was super nervous but it went well🙏🏾🙏🏾
Found out I'm claustrophobic on 1st MRI attempt. Always medicated, tell Dr. in advance to write a script.
I am terrified of MRIS so ofc I get a disease that forces you in one lol. I haven’t looked into the MS community yet mostly bcuz I just feel bitter and afraid of my diagnosis, so I try to not think about it. It will be 4 years since my first symptom on the 24th of may, which happens to be my bday :,) I’m 22 rn but I don’t wanna jinx it but have not had a relapse since. Ig it’s not even a relapse just clinically isolated symptom I think. I started copaxone right away and make sure to take a d3 supplement as well as 20min direct sunlight everyday. Maybe it’s helping idk. I’m curious of another young person’s thoughts on HSCT-currently very risky but shows promise longer term
Hi! I also looked into stem cell treatments and my understanding was that is was not an approved treatment for MS in the US so I would have to go out of the country and it can be dangerous. My plan was to see if my current immunosuppressant could effectively hold back my MS first but I have not ruled it out. I’m sorry about the MRI, I was also terrified to be trapped for 4+ hours but we get through it. I’m sorry for all that you are going through 💕
Thank you for sharing .. do you suffer from any tingling , electric shock type symptoms and what helps with those ?
Love your videos! ❤️ can you please tell what was the name of the re myelinating drug that your doctor had you choose between?
Hey sara i hope u doing good....just want to ask that have you tried dr wahl's diet or discussed with your neurologists?? MS hope guy also talks about drug free way of treating MS...ur views on this??thanks in advance for replying in case you get time to see this
I have heard of these diets! I have some foods that effect me so I do have a restricted diet. The idea behind that is that MS is an inflammatory disease so any foods that can cause inflammation can exacerbate it. I never had a problem with milk before, but after my big flare, whenever I have diary my arms go numb and I get migraines. I decided to do diet control in addition to medication as advised by my neurologists becuase my symptoms were too severe. I had significant damage to my spinal cord and had a lot of trouble walking and lost all senstion in my arms so I want to get my body to a place where it can heal and then I will consider going off medication afterwards! I am a big believer in that if diet might help, no harm in trying!
Tyvm for sharing ur MS journey. How long did it take b4 u got ur official diagnosis of MS i.e months & or year's? B4 getting ur official diagnosis of MS; were u ever diagnosed w/any other deseases such as chronic migraines, arthritis, fibromyalgia, etc, etc?
I was incorrectly diagnosed with just Bell's palsy a month prior. But fortunately or unfortuntely for me (not really sure haha) my symptoms became severe very rapidly so there was not too much confusion about what it was as I had an MRI immediately. Sorry I couldn't be more helpful. Wishing you the best
@@sarahkate717 tysvm ❤️❣️ I wish the best for u as well ❣️
I feel like i got MS after gallblader surgery. My eyes are always tired lost mobility on legs, hands and difficulty swallowing solid food (dysphagia) Can't seem to find a neurologist in my area since March 😞 what supplements can i take while i try to find one. Love your positive attitude ✊️
According to research, the supplement with the most evidence is lots of vitamin D!
@@sarahkate717 thanks saraaaaa 🤎
Hi Sarah ! Is there a reason why your MRI is scheduled so quickly right after your infusion?. I am due to receive my first infusion this month ( I am newly diagnosed)My Neuro wants me to get an MRI in sept.
Hi Monica! So my neurologist and I discussed that this treatment can take some time to have it’s full effect. We planned that I would try it for a year and see the results. So whether this MRI showed that I had not changed or had gotten better, I was going to continue to take the medication because it is possible that the medication had not had its full effect yet… This MRI was just making sure that things were not becoming terribly worse. This MRI was monitoring the effect of medication I got back in December, which was pretty good in my case! My MRI and infusion were done so close together because I was only in town for a couple of weeks! I am sorry to hear about your recent diagnosis and I wish you the best in your treatment. We got this!
Hi 🌹
I hope everything goes well for you. I hated the mask. It hid your face. You are such a beautiful woman. rrrr rrrrrrr. lol!!!!
Hi🌹