We're all different with what we need, and what we need to know about our MS in order to deal with it. This might seem strange to many but in my case, my MS specialist did not volunteer some key information and I did not ask either. Thinking about it this morning, there's no reason right now for me to know:
(1) RRMS or PPMS or whatever else MS: when reading about it, the distinction between all of them is still nebulous. I'm happy to be on an aggressive DMTs that treats both (too early for me for SPMS).
(2) EDSS: I don't need to know and I don't want to know. It's early for me. My neurological test is not perfect but I have no disability and I don't care about whether I'm 0, 1, 2 or whatever. Period.
(3) Prognosis: on this one, I knew that if I asked, I would get a half answer or no answer. No need to try to answer the unanswerable. MS is a new passenger in my life journey and it (he? or she?, how do you call your MS?) will take me where it wants, but sometimes I will be the one with the hands on the steering wheel (hopefully).
I thought it would be harder to deal with the above uncertainties. It's actually not.
Written by
anaishunter
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kdali , even before my diagnosis, I didn't know what the future would bring. Except with 'ms' some things are definitely now NOT in my future, so I know what you mean with regards to your reply.
Just accept that there are uncertainties and you are unsure which one you will have to deal with, and just accept the one reality that you do have. Whatever happens, TOU WILL because YOU CAN, You always CAN.
I agree with you anaishunter , knowing the answers, while interesting, does not change the fact that I have 'ms', does not alter the course that I need to do in order to address it, and it does not change who I am. I have 'ms', that is it, that is all! I am still Carole before, Carole during, and Carole forever. Do not let 'ms' define who you are, instead, adapt to keep on!
We were never given the curse of knowing the future, and in this case, ignorance is bliss. We all try to take the best care we can of ourselves, but even doctors can’t tell us what the future holds.
I have to say I agree with your point of view. I really don't want to know how many lesions I have and where they are specifically.......I just know they are on my brain and spine 🙄🙄🙄🙄🙄. I have a friend with MS and she has to know in the minutest detail where all her lesions are and how many she's got! She gets really annoyed with me when I refuse to ask my neuro how many and where they are! Do I really need to know as it's enough having the flaming illness in the first place 🙄🙄🙄🙄🙄🙄 xxxx hope u are all as well as u can be 💓💓💓💓💓💓
I guess I'm more like your friend I want to know how many and where it helps me to track whether I'm the same or worse than the time before. I also look at the MRI images myself. At first I didn't know what I was looking at but have gotten better at it. I'm a type a personality who is extremely detail oriented. That has served me well in my job. Especially when I'm writing how to guides. Sadly though I'm finding that I'm having to write more of those guides just to try to remember how to do my job. MS sucks!!
anaishunter janetb1968 carolek572 I agree with each of you: MS is a condition that is part and parcel of who I am, but it doesn't define me. It is sufficient for me to have an explanation for my weird symptoms, to have some guidance on how best to go forward with my life. If there were a cure available, and MS could be made to disappear, I would not be any younger, or returned to a previous stage of life; with or without MS, the essential me is still present.
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