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veronique's avatar

thank you for this information - this is really the kind of information you need to make informed decisions about treatment.

I took the EDSS-test and I was shocked to get a 3!

I have never been asked these kind of questions before, just the walking on the toes, and got a 0 because I can walk on my toes like a pro...

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Tom A's avatar

I appreciate your comments focusing on the hope for benign MS, that many newbies have, and your attempt to largely dispel that. I’ve “made it” all the way through from 28 to 64 but have some manageable deficits. I’ll die from something, but hopefully not too soon. I’ve seen or read about lots of others, not so “lucky”. MS totally changed my life, however, and I think that is the initial road block faced. Most think MS should be an illness that is curable and doesn’t involve sacrifice, inconvenience or any significant change of plans. Initially, one accepts no change. Then, a little- they can deal with it. Then a little more if they have to,.. on and on. In hind sight, one can look back and by then, they have been forced to accept the changes one way or another. Not putting up such a strong road block to change, initially, might lead to increased positive outcomes later? Perhaps an early invitation to consider alternative creative ways to have a happy life (just in case)? For many however, that would probably include a marked change in aspects of one’s philosophy of life. In my former profession, I think we used the term denial to describe not facing reality. The excuses are many and it runs from MS to Anti-vaxxers to Climate Science; to electing Presidents. I just thought it was noteworthy your sincere attempt to add some tough truth to your discussion.

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