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by sooyoo 1332 days ago
This 1000x. You won't believe how much I want to upvote you.

I feel so sorry for OP to have asked. It will be so hard for them to find the answers that are actually helpful and ignore every that's nonsense or actively harmful. They are desperate and likely don't have the energy to fight all this.
1 comments
mush_room 1332 days ago
Hey, I appreciate your intent, I feel I can sort through this fine after so many years with this. It's funny because my initial intent was collecting some speculation about _future_ medical advances (even just "AI will solve this in 10 years, trust me, I'm working on it!"), just so, to be very blunt, I can convince myself that it's worth living if in the future I can be made whole again.

It's true that newly diagnosed people might be more vulnerable to such things, I mean, I was and have pursued speculative things out of despair, so it's a fair warning to them.

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pama 1332 days ago
Yes please keep up the hope. As I mentioned in a deep thread below, the causal link between EBV and MS only got established in 2022 so there is hope that in 10 years time you will live through major medical advances. (I would not be able to disclose if I worked on it, but I am nearly certain that many other people work on it.)
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alexmanuel27 1332 days ago
You have to live I note present. We all die. MS just makes you fear for the future. Best advice I have is use a PMT (if your doctor agrees) and slow the progression so advances in medicine can cats up. Exercise, good diet, controlled blood pressure and cholesterol are important.

Few die form MS, but it makes you weaker to other conditions, so maintaining good health is key.

Be present and understand that there are many in far worse situations than yourself. For my condition there is one DMT (as I have PPMS) called Ocrevus, and there are trials for other drugs. Time will tell what works well, but hope springs eternal.

Once last point: it is diagnosed by Venn diagram: the inter station of MRI lesions, mobility issues, spinal fluid bands. It is a circumstantial conclusion: we are in the early days of understanding this condition. Just remember that life is terminal and enjoy every day to its fullest.

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