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OrionMS

Updated 10mo ago

Living with Multiple Sclerosis: Seeking Advice

Hello! I have Multiple Sclerosis and am feeling stuck. I am currently on Ocrevus, an infusion I get every 6 months. I feel the risks outweigh the benefits and I would much rather try an herbal route. I regularly use cannabis which has helped me with my symptoms, however not legal in my state. Any advice is appreciated, I just want to live the best life being happy and healthy! Stay safe 🤍

Can you help? connect today

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Lissential

2y

Hiii I would love to converse with you more on this I have some questions as well
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Joseph223

2y

Does cannabis mess with your memory ?
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Wheeliedemylinayed

2y

Hey, just want to clear something up. Ocrevus slows progression of MS and prevents brain lesions. This is really important for long term effects of MS and things like your level of disability. Cannabis helps with symptoms, which is more short term like how you can get through the day. Both are important but they have different purposes. Hope that helps!
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Msmamamade

2y

Hi. I was on Ocrevus now kesimpta. And I smoke a lot of cannabis lol. Only thing that gets me through my day. O gave me new lesions and has just made me worse. Think I g kesimpta is doing same. I have the hardest time walking :(
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Wildcat

2y

I take Avonex.
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Wildcat

2y

I don't mean to complain how people post but I find it really helpful to not make your post to drag on. If the post is too long I usually don't read it because I can't absorb what is being said. I usually don't read the real long post.
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Shla

2y

I have been on so many MS meds. I seem to be the first one I can feel helping
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specialCharlee51

2y

Please don't take this the wrong way but herbal stuff will not slow down progression. Damage on top of Damage. Bad idea. You mentioned 420. I take it that means THC, NOT CBD. while THC may not be legal where you live, obviously you are still able to get it. So for that, I'd say it's not a big problem. And if it helps get you through your day, who cares? It's just a plant for goodness sake! But that plant is not going to replace the right DMD for you. Help with symptoms, yes of course. CBD in MHO, is pointless and expensive. BTW, I'm a child of the '60's. And I love my 420, every day. I'm on that side of the line for toking. But for the disease, not the symptoms talk with your doctor. Pot helps you feel better but won't do anything to keep progression from happening. Herbal remedies are not helpful as a stand-alone treatment for MS.
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TheLeoLady

2y

Ocrevus was a horrible experience for me personally. For many it's obviously a winner the way its all over tv now. But I took a break from DMTs for 2 years after stopping o. I wanted to try a more eastern approach to healing. I integrated mediation and neuro specific exercises (MSgym, MS moves with Mandy; both on YouTube and Facebook). I do smoke herb. But not as much. Usually in the evenings as it seems to help with my restless legs and overall fatigue. Everyones MS is as unique as we are. What is awesomeness for one may mean relapse for another. All the neurologist is doing is a best educated guess. Get in tune with you. Trust you and your body to make your next best decision for your MS life. 🧡🌻
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specialCharlee51

2y

Way to preach! Go for it. I did Tysabri for 5 years even during the PML brain/virus scare. I had a port line inserted to avoid monthly IV sticks. I'd still be on it if I had a choice but I had to switch to oral Gilenya bc my insurance changed to VA. So disappointed VA doesn't permit IV meds for MS. Not complaining just disappointed. NBD, I'll live. Gilenya is better than nothing.

The content in this post is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition.

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