Last reply 1 week ago
Hi everyone!

My name is Jason and I am 30 years old from Pittsburgh, PA. I was diagnosed in May but noticed my first symptoms in 2016 and went undiagnosed. I just finished my 2nd half infusion of Ocrevus and I am waiting for the day when I feel close to normal again. I have always been a glass half full kind of person and I’m looking for all the silver linings I can find. One of the first things I did after my diagnosis was buy plane tickets to Colorado so I can hike the Rockies. Not long after purchasing my tickets to Colorado I applied for and was selected to go on an international expedition to the Arctic in June 2019. I joined this group to connect and become friends with others who are going through a similar fight!

Please feel free to add me as friend!

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mlgilber1
1 week ago

Hey Jason! I love your positive attitude! I was also diagnosed this May and will hopefully start Ocrevus soon. May I ask how the infusion went? I was on Tecfidera for a very short time before having another bad relapse and they felt I needed a treatment that was a little more aggressive. They did plasmapheresis treatments to help with my symptoms, but I’ve finished those. I couldn’t even move my left leg before the treatments, but they were extremely helpful. They said it’ll take 2 to 6 weeks for the approval of Ocrevus and it’s only been a week so far, but I’m excited to get back on treatment. The international expedition sounds amazing! Welcome to this site!


stumbler
1 week ago

Hi @jasonhallmark and welcome.

Sounds like an unplanned interlude in your lifeplan. You’ve quickly adopted a treatment, which will hopefully allow you a quick recovery.

Good luck with your planned challenges.


dd11
1 week ago

may I ask how you chose which medication to be on? I made my decision a long time ago when i was young, and I wonder if it is the most beneficial .


vixen
1 week ago

Hello @jasonhallmark, wow, you really have retained a half full glass! After diagnosis, many people struggle to find a sense of the ‘new normal’. It’s all a bit new for you, so be patient with yourself. Your body has had masses to deal with, and now Ocrevus. I’m older than you and diagnosed last year which came out of the blue. But I feel I’m as well as I can possibly be under the circumstances. That’s been achieved by a real focus on balance and wellbeing, including diet and regular exercise. It has probably taken a year to find the right balance for me. Your positive outlook will take you a great way in your coping with our condition. Oh, and avoid stress and stressful situations at all costs! 🙂


jasonhallmark
1 week ago

Hey, my infusions went a lot better than I thought they would. I slept through the majority of both treatments with little to no side effects and I was able to go to work the next day with no issues. The only small side effects were itchy ears during the infusion lol and just being fatigued for a few days after. I selected Ocrevus with my neuro and signed up for a long term research study. I was a good candidate for the study because of my age and the fact I was never in any other MS meds. One of the things that has bothered me is not being able to get to the gym. I used to go 4-5 days a week but haven’t been able to since my symptoms showed up at the end of April but I can feel that I am close to getting back! Until then I am going to keep my head and keep walking as much as possible for excercise! Thank you all for your messages!


vixen
1 week ago

Hi @jasonhallmark. One of the things my diagnosis took from my repertoire was suddenly being unable to walk past 12 or 15 minutes before a sense of disconnect set it. However, I persisted in two daily 12 min walks. A year later, I can now go 25 or 30 minutes and probably further if I pushed myself. This has been in temps of 30 as I’m on holiday. My point is, the lesions haven’t healed, my MS has not gone but, through persistence, I have perhaps developed new neural pathways over time which have enabled this. My dietalso gives me more energy too. When you get back to the gym, take is slow and build up. You don’t have to prove anything to anyone, and certainly not our invader, MS!


mlgilber1
1 week ago

@jasonhallmark Thank you for sharing your experience! I can’t wait to get approval so I can finally start! I’m so glad you’re starting to feel like you’re almost to the point where you can go back to the gym. I miss going to the gym as well! I’m always afraid that I’ll end up passing out or falling if I were to try right now because I’m so weak and dizzy. I’m just thankful for my physical therapy for now so I can hopefully become a bit stronger and more balanced until I feel well enough. Best wishes to you!

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