My Experiences with MS Treatment Options: What Worked for Me and What Didn't

I took Avonex and it took me at least 4 days to get over the “flu” and then it was time for the next injection. After that I told my neurologist no more shots!! I started to see a new neurologist with the Cleveland Clinic in Las Vegas. Tecfedria was in trials and I was started on it. This has been the only treatment since 2010. I’ve never had issues and would tell anyone with MS to try it. It’s a capsule in the AM and another capsule in the PM. You will have to do blood and urine tests about every 2 months at first and if all goes well they recheck your levels every 6 months. I would see my neurologist every month for a 2 hour period. So far I’m still on Tecfedria and I’m due for all the tests and an MRI. Since taking this medication my lesions have stopped changing and no new ones have appeared. Talk to your neurologist and ask about Tecfedria….

Now I understand why listening or sharing to ppl with ms helps more than healthy ones. The understanding ability we get once sick is way higher than those who dont share our disease. Been diagnosed on 2021 summer with first 11 lesions which grew to 14 in 3 months. Started with a tyroid cancer followed by multiple sclerosis, pulmonary embolism followed by infection, half-destroyed left kidney, 2 hearts stroke and parasite in liver pancreas along now spleen growing abnormaly in size. Last control I been told I have left retina damage with eyes dryness, my eyes burn under sunny days and got blurry vision now and then. Started with Tysabri but it almost destroyed my private parts and become positive to JC virus in less than 2 months so I am now with Ocrevus once each 6 months. Its real hard on the body for 2 weeks after injections huge fatigue but I can move almost freely for first 3 months, the last 3 months pain symptomes and mobility difficulty comes back slowly rising to a tipping point just before my next therapy. Thank you Seb, your positive spirit kinda lift my energy up knowing that finally someone understands me really help alot.

I've been on Copaxone since my DX in 2007. I've had few new lesions and continue on this treatment for now. Unfortunately, I ended up with tongue cancer which caused my MS to run out of control (they say due to Chemo and Radiation) for a brief while. I still have continued on Copaxone however my Neurologist has suggested several other ways to proceed. I'll know after my next MRI in two months. I'm grateful for the information about your experiences with different treatments and also others who have written here as well. By the way, Seb. You seem to look more healthy in this video than in some of your past ones. I'm grateful you are doing well. Thank you for keeping us updated and in no small way, educating us. One last thing - I'm thinking the tremors that have started with me are definately due to the MS and not Parkensons (FYI).

Thanks for making this video and answering my question! Love you Seb!

Thanks for sharing your experience Seb! The first few months on my DMT (Copaxone) were ere a challenge with injection site reactions but luckily they have settled down.

Coming here to let you know the deep admiration and respect that you generate for the honest and sweet way in which you have decide to spread your experience. You are a source of inspiration and optimism. 'Don't ask for whom the bell tolls, it tolls" for any of us. Wishing you the best I greet you from Argentina. Keep on going Seb. Btw: the infection caused by the John Cunningham ( JC) virus is called Progressive Multifocal Leukoencephalophaty.PML

I remember months ago, I too had to get a series of vaccines to get approved for Ocrevus, including some who wouldn’t even suspect (had to get vaccinated for Shingles even though in Canada at least, you won’t get approved for it unless you’re over 40). But is it worth it, is so far and even though it’s advised you’ll have a weakened immune system, take care of yourself as best as you can. Stay strong, everyone. And Seb, thank you for being so open. 💪🏼

Ocrevus Girl here it’s the Best ! Ps I’m a new subscriber love your channel❤

I was diagnosed in June of 2020 and started on tysabri in July of 2020 and been on it ever since. Thankfully I am negative for the JC virus and have had no relapses or progression the whole time. Thank you for telling your story and your experiences.

Hi Seb, thank you for sharing! I was diagnosed with MS in 2008 and took many meds that did not work for me until I started Tysabri in 2010. Tysabri worked wonderful for me, but I felt like I needed a 1 to 2 year break from it after all these years. I was also tired of arranging my life around the Tysabri monthly infusion cycle. I just started Ocrevus today. I cant find many people that can compare their experience and quality of life with Tysabri vs Ocrevus. How was your quality of life on Tysabri vs. Ocrevus, or was it more or less the same?

I tried 2 different medications before starting Gilenya and Gilenya has been really great. I feel so accomplished after every 30 day supply I finish! Thank you for sharing❤️

I’ve been on LDN and it is working. No relapses or progression since starting and it’s been almost 10 years.

Hey seb😊how r u its lulu thank u for making ths vid im sure lots of ppl will benefit from ur experience. Im so happy for u that u finally found a dmt ur comfortable with and doing great❤. As u know im second year in and still not on dmt because of my fear of immunosuppression in general ive been catching many infections and relapsing from that plus my fear of malignancies and pml. Almost all the neuros ive been too r recommending ocrevus or kesimpta and im scared of needles😢. I wanted to ask a favour can u tell us more about how u feel after an antihistamine steroid and dmt is given? Has ocrevus helped with any symptoms that were difficult for u and fo the docs do any tests after to check for the jc virus and malignancies? How do u feel ocrevus has helped and what is meant by aggressive treatment.🙏🧡 i forgot to ask u is it true that u can get frequent infections because they do trigger flare ups and that can be really bothersome like in my case and small infection i get severe vertigo and cant stand😢

I have MS since 2015 but only started a treatment in 2018. I have been taking Gilenya since the beginning. I have also been flare free since starting taking it. In the beginning i also felt nausea but like you only lasted the first months . Now i use the generic fingolimod and i continue with no side effects.

Did you ever try different life styles? like the SWANK diat? or OMS from Jelinek?

Hey Seb. Thanks for sharing. A few months ago, I am also diagnosed with MS and I am 26 yrs old. my first symptom was a headache and a dark cloud in one eye. Now I am taking interferon injections weekly. There is some progression according to MRI. I am here because I need your suggestion. I got an excellent job and research offer in a foreign country. But I can't decide what should I do. In this condition, If I go to study I will be alone there. Should I go with it or just leave my dreams behind for this disease. I am afraid about my health and I don't know how to deal with it properly. I saw your videos that's why I am asking if is it possible for an MS patient to lead a good life? I am looking forward to your answer. Thank you for your time.

Have you actually been able to choose the DMT? How come you didn't choose Ocrevus in the beginning?

Thks for sharing your experience. My son (33 Years old) has been diagnosed MS in May 2022. He started with Tysabri, which after the first 2 times managed to stand quite well, but had to abbandon last january due to too high numbers of his transaminasis... Now he started with Ocrevus in April (supposed to have his next infusion by the end of october) but he feels really wrecked, unable to recover at all from fatigue like he was able while on Tysabri. Not saying he was prancing around while doing Tysabri, but at least he had 2/ 3 "good" weeks in a month, which now are one or two days every now and then. How do you manage fatigue? Looks like you're able to go on speaking for nearly half an hour almost effortless...

Please make a video on facial changes

Has ocrevus improved your symptoms Seb..had read online that it has helped reduce lesions and symptoms of MS