I didn't expect this to happen...
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- Опубліковано 25 кві 2022
- Here is an update with how the first dose of Ocrevus went for me. As the video explains it was far from straightforward. I did suffer some side effects that whether it was related to the therapy or my illness that I had, who knows.
However I am feeling good again now fortunately.
The overall process for the treatment was very much straightforward and I found it fine and the day went pretty quick!
Let me know in the comments what your experience has been with Ocrevus or if you have any questions at all!
Amazing strength son. I’m so very proud of you
Thanks Dad!
I’m a little older (48) with MS, diagnosed 5 years ago but symptoms go back to early 20’s looking back. I have more movement issues than eye issues, walking not so good anymore. I was a workout warrior throughout 20’s into 30’s, that’s when I really noticed problems. Divorce kept me from testing as with young kids and then child support I couldn’t keep up financially. Fast forward to now and I have better insurance and am on Tysabri once a month. No issues with it really but walking is not cool, and core strength is really bad no matter how much I try to work on it. As a younger guy always, always, always work on all things core. It will help keep you independent. Stay strong and remember to take care of yourself and don’t put it off like I did.
Man thank you really for sharing. i hope the best for you
I'm glad you're doing well and also I'd love to see video on everything you are doing to fight this terrible disease. I also just started taking Mavenclad treatment and I'm not sure is my symptoms from the drug, stress or ms but yeah I'm still grateful that I've started the treatment.... ps. I'm newly diagnosed (age 27) and I wanted to say your videos have helped me a lot!
Hey Jenni, good to hear from you and so glad that my videos have helped you! But yes I definitely think it'll be worth me doing a video about everything that I'm doing because I only touch upon some of the changes that I have made that have really helped and so hopefully they will help others too! Yes hopefully Mavenclad sorts you out but I also think it's vital to look at the other ways you can help fight this disease!
Hi.wow so glad you are doing better 🙏🙏
Thanks Petro! Hope you're doing well?
Thanks for the update! I’m sorry you had the eye issues but happy to hear they are getting better. I had optic neuritis which is how I was diagnosed and mine was just like how you described where when I would try to focus on something it just disappeared. It was so weird and scary. I’ve been on Rituximab since January and didn’t have any side effects. I get my next infusion in July. Won’t really know how it’s working until early next year when I get an MRI but I’m hopeful! Ive got my next MRI scheduled for early July but my understanding is that it will be my baseline and won’t really tell me if the DMT is working since there was a gap between my initial MRI for diagnosis and when I started the DMT. I haven’t had any flare ups so far and am praying that continues. I hope your eyes continue to get better!
Yes that sounds like a very similar situation to me as I am waiting on an MRI which will be my baseline and then similarly won't know how it is working until the next MRI in a year or so. Although as I mentioned in the video I am really keen to see if there have been improvements on the MRI from my MRI's because of all of the changes I have been making diet-wise etc. But yes thankfully my eyes now seem pretty much back to normal again - it's always scary when it affects the eyes isn't it because we'd be pretty lost without them! Thanks for the kind words and hope Rituxamab works for you and you remain relapse free!
Glad you're better! I had no issues with my first 2 halves. Tomorrow I get my first full dose and I am happy to report I am getting the infusion in home 😊
That's great! Has it also helped you remain relapse free so far? That's great that you are getting it done at home - how have you managed that?! Haha
Thank you for sharing your journey with Ocrevus. I will be getting my first dose in a month and have been wondering about side effects from someone that has taken the drug. I was taking Avonex for years and finally got tired of feeling bad all the time from the side effects and stopped taking it. I tried managing the MS on my own but had an attack so decided I would try the Ocrevus. Diet and exercise is the key, I feel, to staying relapse free. I didn’t follow that and so here I am trying to get back on track. Thank you again!
Hey Kimberley thanks for the comment! But yes I would definitely suggest getting back on track with diet and exercise because like you say it is key and hopefully my videos can help get you there! My latest video is really interesting on fasting which might be a good thing you can start straight away by starting intermittent fasting! Hope that helps and let me know what you think 🙌🏻
Thank you, Dear Tom, it is really help to listen to your you-tube Chanel. 🙏🙏🙏
No problem I'm glad the content is useful for you! Do you have MS yourself?
Thank you, my Dear friend !
Yes, Tom, more than 20 years, and here, in Middle East, it is very complicated...
@@danielklementi Ah how come it is difficult over in the middle east? At least you get a lot of vitamin D!
It is stress every day, so it not helps to MS, but thank to your You-tube Chanel I feel best, and thank you of all yours videos.
@@danielklementi Ah well I'm glad my channel can help you!
please do a vid on what you do to manage ms!
Thanks I think that is going to be my next video now after all the requests!!
Glad you're feeling better, what an ordeal for you. Next time ask if they have paper tape - it won't irritate your skin.
Yes definitely glad to be out the other end! Yes they did that when I went in for my second infusion and it was fine :) I just have very sensitive skin have always had eczema etc!
Had a similar but more profound experience starting with fingolimod alot if my symptoms really enhanced and it was like that for about 2 months and then things started to calm down but you really don't know is it ms activity is it the medication is something wrong you did to exacerbate symptoms
Something i try to do lately is i don't try to stress or worry about things i can't really control because what's the point really
Keep up the good fight bro .
Thanks for sharing! But yes that's exactly the frustration I had, not knowing what was causing it, was it another relapse was it stress was it the illness? But yes I couldn't agree more I always try not to worry or stress about things I can't control because it is pointless. But sometimes I end up doing that anyway!
Thanks man, keep up the fight too!
Ty for this video though I see it's a year old I just had my full maintenance dose of O and like you was kinda sick but wasent sure but found out forsure after the infusion for the first week I got so cold inhad to cuddle with a heating pad by the end of that week my ms symptoms started to slowly grow back in even though I had just gotten off my cane during the 6 month between the initial two doses you're talking about but now back on my cane since this full dose .... kinda been crazy cuz i worrie mine is an actul relapse as it's taken me awhile to get back to where I was before the infusion on the 12th of Jan and its middle of Feb..... I got over the cold for sure and though I got tested for infections and they all came back negative my nero says I probably did have something but no test for it and I'm not feeling sick like I was though my mobility hasent gone back to normal hopefully pt will help as now I feel it's only super mild weakness but major spasticity cuasing the most problems..... but ty for making this video as I've been so worried that my experience was majorly diffeent but like you my nero says it's most likely just a pseudo relapse .... but I guess we'll know for sure when I actually get my MRI
Do you get more colds and flu since you are on Ocravus? Should I wear a mask in public?
Hi Tom your trooper your doing wonderful now Always tell team of doctors when something not right I'm listening to your story This is what I think happened to you You had bad cold sinuses then they give you strong medince made you weaker then normal set of symptoms of MS due to cold But minor symptoms clear up Allegries sinuses major factor in MS I had bad sinuses to teary eyes last two weeks it wasn't cold just a Allegries all of sudden left foot toes where hurting and tingling I went to podiatrist and said nothing wrong with toes So I knew the allgeries bought on few MS symptoms So then I immediately ordered nerve shield order arrived next day took it immediately symptoms went away So what saying is same thing happened to me except its left foot toes The Allegries and cold set MS of I recommended nerve shield its naturpatic nerve vitamin its works I glad everything okay now I understand you completely we talk same language where related We have MS Have a good week Tom 🌸
Thanks for the comments Juliette! But yes I think you're right I think it was a combination of it all. Obviously the sinus infection will spike the immune system and then hitting that with an immunosuppressant probably just amplified everything and my symptoms. I will also definitely look into that nerve shield supplement you are referring to.
@@tomgarbett77 HI Tom it happened to me allegries and sinuses to Nerve Sheild help me alot it took about three days to start working and then felt difference Its protects mylene and nerves I think this what we need its works good Tom🌸
@@juliette1884 Great I will definitely look into it!
Would you never try to do it with just diet like Matt dos with best bet?
MS won't kill you DMT will.