Відео

so where are you with it now?? i'm doing Stamets Stack, lol and it's going well.

No update in a year are you okay

On mavenclad from 10 years on tysabri. So far so good. By the way why did you take this video outside with wind😮

Likewise my daughter, Mavenclad without any side effects, two years and... via! She couldn't deal with tysabri, it almost compromised her liver.

What are these other health issues you keep alluding to?

Pls keep up the updates on mavenclad as someone whose had ms for 20 years and now having to choose between tysabri and mavenclad I’d appreciate any personal experiences on this med. any posts can help ms’ers in like challenges . thank you for your candor in your posts. Keep running the race with endurance for the hope of better tomorrows even when the hurdles of todays make you slow down

Thank you so much for the update and you keep your mind going strong - as strong as can you can. I felt what you said about the way you come across to people as competent! Me too! Frustratingly good at the same time I think…take care for now.

Thanks for the update, I was wondering what medication you had decided on. I know someone else who will start Mavenclad about the same time you are starting it. Please update on how your feeling, and side effects while on Mavenclad. Hang in there, stay strong, and don't let MS define who you really are.

Your welcome ~I added you on twitter so I can keep an eye on you ha

Big decision really. What a lovely walk -stay happy kisses xxxx

lemtrada has been great for me. The risks are easily mitigated with regular monitoring. I've been fortunate that I didn't get any serious side effects. Lots of opportunistic infections while the immune system was reconstituting but easily treatable. The dosing schedule is convenient. I did have a relapse this year and I had to have a third dose this week. But I'd definitely recommend it. We take calculated risks whatever medicin we take. In my view the cost benefit ratio is massively in favour of taking lemtrada

Thank you for putting your insights out there! Really appreciate it! I am in a similar situation in that I had Lemtrada in the past(before COVID),but my last MRI showed disease activity. So now I try to figure out what treatment I'll have: kesimpta,ocrevus or 3rd round lemtrada(a big no no for me as well!)... I trust my Doc! I definitely feel the pressure this pandemic is giving. I don't really have an advice to give you,but go one day at a time and keep believing you'll figure it out mate! :)

Hi Stu, not sure how far you've come by now regarding your medication choice but I have been in a similar situation (and in some way still am). I was on Tysabri for several years and very happy with that - no side effects, no relapses, just one tiny lesion on MRI. Then I caught JCV some where and my doctor urged me to change which I delayed as long as possible, just like you... Because I have had rather high activity in the past my doctor wanted me to stick to the morw potent meds and in the end we switched to Ocrevus which I'm on for almost 2 years now. The pre-meds really are no big deal - as a woman that goes through like half a box of painkillers every 4 weeks having to take one pill anti-histamin the night befor, then take 2 pills of Paracetamol in the morning twice a year is nö dealbreaker for me. In the hospital I then receive Prednisolon and as I have a rather sensitive stomach also one pill of Pantoprazol but that's optional. All in all it actually works very well for me, other than feeling seriously knocked out during and after the infusion I have hardly any side effects. I Was afraid of infections at first but I don't seem to suffer from them more than before. They maybe stick to me one or two days longer than to my co-workers but that's ok. My MS is kept in check and even though getting my covid vaccine was a bit of a logistical challenge ( 3 months after the last infusion the first shot and then 6 weeks before the next infusion the second one) it went fine and yes, I did manage to generate antibodies. That being said I'm not really comfortable with the whole concept of b-cell depletion and the long-term effects on my body so I "negotiated" with my doctor that we switch to a different medication if I don't get any activity until next summer. The options for me would then be Tecfidera or Zeposia (as gar as I know an "update" of Fingolimod) depending on the experiences gathered by then. Kesimpta, Mavenclad or Lemtrada affect my immune system no less than Ocrevus so they are out of the question really. I would be curious to hear what you decided to go with and how that works for you. Best wishes from Germany 🍀

Is Tecfidera an option for you?

hi you may have already switched meds by now but just wanted to say I did Lemtrada in 2016 and 2017 and had no MRI progression and no relapses until November 2020. I did have cognitive decline in 2018 so I actually stopped working but never had an issue with infections. I have had symptoms start popping back up in 2021 so my new neuro advised Ocrevus, Kesimpta, or Zeposia and like you I have an issue with the B cell depleters so I am leaning heavily towards Zeposia but I see my neuro on October 5 to discuss the MRI I had last week and pick a new med. I did have hyperthyroid issues from Lemtrada but after a year on meds my body corrected itself and I've been off those meds for almost a year. So, overall Lemtrada was nice in that I was fairly stable for about five years but there is monthly blood work and there can be side effects. Thank you for being open and honest on your research and concerns :)

Trying to find out more about how you felt coming off the tysabi. Had to stop tysabi, cause had an enhancement on cerebellum, causing balance and speech issues. I am coming off tysabri, and only 1 week in, having extreme burning pain. I am going to start Ocrevus in about 2 weeks.

Bless you, just officially got diagnosed and although I have been attempting to educate myself for a few years, still a lot for someone who took barely passed high school biology.

New to the MS party. Ocrevus first advice. Trying to learn about things, that’s how I found this vid

Hi! I might not have too much to say to you, but I went through Mavenclad treatment (after some corticoids, it was the first I got) and I am so glad that I did. I only had a headache for two days, but no other side effects and now I don’t feel any MS symptoms other than some tingling in my feet sometimes when I walk a lot in the heat, etc. Through covid I’ve been fine and few months ago I got the vaccine and am fine as well. My two years on the treatment ended in December 2020 and I haventbeen taking anything other than vitamins since. I hope you find the best for you!

Hi sweet Stu..first, thank you for responding to my post on your other site. Second, re that damn tinnitus..yes, it will drive you nuts at first so use the sedatives until your brain gets used to it, which it will. It becomes your new normal..I have it too and complete silence should be avoided. Don't avoid music, it won't make it worse..I use a utube rain sound and fan by the bed for sleeping. It works. There are many white noise, rain, ocean, and forest sounds on utube to hide and soften the tinnitus, help you sleep or even during the day with earphones. Next, secondary school kids are indeed petri dishes so wear double masks around them and keep your safe distance. Open windows if possible. Stu, we all have negative results from surgeries even with great docs. You're not alone with that. Every problem I have is from medical interventions! But I'm sure your decisions were based on the best info you were given at the time.so no regrets. Trust your gut on these new critical decisions and remember you can always change your mind. You are a brilliant guy and I know you will figure this rubiks cube of a problem out.. You are right. It's all a huge gamble so keep analyzing and you'll figure it out. I'm not an MS patient, just a 76 year old retired psychotherapist. I do know that constant worry and stress are killers. So stsy in touch with us and the beautiful sky and birds around you. We are all fighting depression and anxiety right now. You are loved and not alone. I am in Florida. Far away. But my arms are around you anyway..xxxxoooo patti

Stu this is a lot to take in for anyone of your friends like me never mind even beginning to understand what and how you're feeling and I feel gutted for you. I really don't have any advice for you on the different treatment options but I just wanted to let you know if you need someone to talk to I'm here for you. I'm struggling with depressions and stuff myself these days but if I can help you in anyway you can get me on Twitter . I hope you still have my Handle on it as it hasn't changed in years. I hope to hear from you again soon and I'm so glad to hear for you again even though it's not with such great news. Andy M

Great video Stu. Think I've learnt alot about T and B Cells 😉 Best of luck with your decision & whatever your allowed to go on. Think I've mentioned before to ya on Insta, I also have the JC virus. Been off Tecfidera for a year & half. Just took myself off it. Got fed up with infections. Cheers. 👍

😘

Any updates ?

Excellent Video! Apologies for chiming in, I would love your opinion. Have you ever tried - Dinanlinson Taking Peace Approach (do a google search)? It is an awesome one of a kind product for overcoming your Multiple Sclerosis symptoms minus the hard work. Ive heard some decent things about it and my best friend Jordan got excellent results with it.

Can you have ms with normal mri of brain and neck?

Stu..I am seeing this 3 years after this post. I wonder if you realized how strong and brave you were just to be able get out of the house and make this video! If you worry about how you look here's what I see- a gorgeously handsome young man with a fantastic smile, brilliant mind and articulate caring spirit and soul..please update and let us all know how you are. I wish so much that I could take your suffering from you and take it on myself..much love and many hugs from Florida. You are most definitely not alone..

Get man this was so good and close to where I am

Hope you’re well m8

Very inspiring story, I have had MS for about ten years but not doing much about it. Maybe I need to know what it means to "accepting it"

That’s a pretty quick time to eat a diagnosis. I spent the weekend in the ER with whole body tingling / numbness and spasticity and now I’m waiting on an MRI which could take several months.

Really useful to hear your experience thanks..hope you get plenty of time with it in remission

your amaizng bro !! thnx you

Fantastic achievement

Whoever disliked is actually twisted

have you seen the interview with Dr Coimbra about Vitamin D protocol there is one on UA-cam I was diagnosed in October 2016

hello from Aberdeen. Loved your story mate. Do you know any society's for young people with MS in Scotland?

Hi Stuart, your video came up as a suggestion . I have recently been diagnosed with MS and found your video very interesting and encouraging . I am 47 so much older than you and I also have arthritis which limits my mobility significantly aside from MS. I want to say Thank You for making this video , I am sure it will help many people . It is wonderful that you have been so active in raising both funds and awareness , I hope you feel very proud , you deserve to. I especially appreciate your candour about your experience with treatment as I am due to start on 3 times a week injections very shortly and it is particularly helpful to hear that you have found a treatment that works for you . Thank you again for your courage in sharing your story. Wishing you every happiness .

Its always good to hear you on here Stu as it proves your still fighting and I know you don't like being praised for anything you've done but your should be. The fundraising you've done is so remarkable considering what you've been though and yes you do look good physically

Sounds pretty dreadful Stu I just hope life gets a little bit better

i felt something wrong at 11 so im same as you and understand your simptoms

This is really brave mate, I needed this just now.

Hi Stuart I come across your UA-cam film. about ms, this is a virus can be cured but mostly medical people like give medicines this slow things up but not cure,if care give me email i can write to you advice how this be cured and can be without medications

Try going detoxing your body and then following a raw vegan lifestyle, I was diagnosed with relapsing remitting MS in 2012 which turned into secondary progressive and after completely detoxing my body and following a raw vegan lifestyle I am now symptom free. In me the symptoms progressed so quickly and so much that I became pretty much bedridden and nearly lost my eyesight on my right eye due to optic neuritis. UA-cam Loren Lockman and MS, believe me, you won't regret it. Good luck on your journey my friend.

the treatments dont work...as you get older you get worse,,no cure because they cant fix scaring in the brain.

I was 14 as well now I'm 25

Hey man hope you are fine! Long time no speak! I think what you are doing is great, so much respect for you. Very bold and brave to share your story. Keep it up. Hopefully see you soon bud!

thank you

Thank you for making this video. I've been dealing with my own experiences with my ms and it's always nice to hear stories of others going through the sane thing as I am. I know I'm not alone in my fight even if i feel alone more then ever in my home life. You inspired me to talk about my experience so maybe it makes this ride a bit easier. I didn't realize how therapeutic it could be for me to make a video and just simply talk.

Ty Stuart, you are very brave and i enjoyed youre video, helped me as well x