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July 14
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Answer Summary

Members opened up about experiencing colitis connected to MS and its treatments, particularly Ocrevus, with several describing severe symptoms... Read more

Members opened up about experiencing colitis connected to MS and its treatments, particularly Ocrevus, with several describing severe symptoms like dramatic weight loss, malabsorption, and gut motility issues after starting the medication. A recurring theme was frustration with doctors who struggled to identify the cause, with one member sharing that their colitis only showed up in stool tests despite negative colonoscopy results, and that self-advocacy through researching personal medical records was key to understanding what was happening. Many members agreed that more awareness and research are needed around how MS and its treatments affect the whole body, not just mobility.

A MyMSTeam Member

Colitis from ocrevus and maybe other ms meds but it is not neurological. My daughter has ulcerative colitis which is autoimmune diagnosis.

July 15 (edited)
A MyMSTeam Member

You are very wise

July 15
A MyMSTeam Member

I totally agree. I think the fact that a lot of doctors just aren't knowledgeable enough about it plays a major role in that description. That would be like saying a person broke their leg without a cause. Buildings don't crumble unless the foundation or wiring is bad.
Even when I research it, I see missing aspects that could really help people figure out their personal situation. It's not cut and dry like some would lead you to believe. Many factors can play a roll in how bad or stable the disease is.
I honestly thought ms only caused issues with mobility but I quickly found out that it's not the only thing it affects.

More research and understanding is needed across the board.

July 15
A MyMSTeam Member

Well it maybe is positive that it didn't show immune mediated colitis. When they say functional colitis they say they can't find a cause. I think functional colitis diagnosis is when they can't find a cause. Something seems off with their diagnosis. Ocrevus is probably the cause and effect. I'm not a doctor but your having awful symptoms after getting that drug means something hit you.

July 15
A MyMSTeam Member

There needs to be a class action lawsuit against the makers of ocrevus

July 15

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Liverpool, UK