Expectations, do not have them they are not your friend. One exception here, Disease Modifying Therapy (DMT), will work. wether it works for you as expected is the question. Sometimes it takes a different medicine to suit your individual Relapsing-Remitting ms (RRms) This does not mean that DMT does not work for ”YOU”. Just that the Central Nervous System (CNS) is rather large and a different one may suit your individual needs better. Do NOT give up on your medicine without talking to your Neurologist (neuro) first, then only stop to change DMT.
Do NOT expect a cure, do NOT expect to see anything so then when “YOU do notice something. “YOU” are pleasantly surprised, and this is a good surprise. Do NOT expect anything to be the same as it was, medicines especially. I started out on two hundred milligrams of opioid medicine on my face and ended up after the second or third overdose having maxed out, having to have surgery. She who must be obeyed ended up having to have botox injections on her bladder, she just got sick of having to go to the bathroom every few hours. Now she sleeps like a baby all night and most of the morning. I think she is just catching up on twenty years of rubbish sleep.
So, curb your expectations, better yet have none and just let what will be, be. Much less disappointing then, always hope for the best but never expect it o happen. Very much like playing the lottery. I hope to win but I just really do not expect to.
I do NOT like saying this, but we all have a chronic incurable disease. As I have always been told, it does not get better. For “YOU” it might stay the same but for some it gets worse. That is why we take DMT so it gets worse at a slower rate and that is what we want. Be comfortable with this and at your own pace learn to accept it.
Royce
RRms is not all bad, it really does have some good bits
Written by
RoyceNewton
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I've accepted that I have MS about a decade ago.I have had practice with a Type1 diabetes diagnosis in my 20's and know how to maintain my happiness.
As for DMTs? I definitely don't have expectations. I don't take them any longer and am glad of it.
I know I have a different opinion on drugs for MS than many people here and I am not recommending that anyone stop taking their meds, but I am not doing badly by any means.
As I have always said we have choices. I guess yours is a little different to mine, but it is your choice. Type 1 in your twenties now that is very different
I was surprised but relieved to find out why I was feeling the way I was. Most people associate it with being younger but it can come up later as well. Insulin is one drug I won't stop.Lol!
As for the MS diagnosis. I finally had answers. I had been getting electric shocks down my arm and I never knew WTH was causing them, among other things. Lhermitte's sign was the absolute worst thing about MS for me.Thankfully, I do not have these issues anymore.
I respectfully disagree with you on the lottery analogy. I have won the lottery by finding this forum with many forum members who are kind, thoughtful, caring, and entertaining in their posts each and every day. Thank you, everyone!
There is the saying "hope for the best but plan for the worst" which applies to all areas of life. While waiting for testing to determine my diagnosis I had a list of things that were potentials and MS was the best thing on the list so it made the blow easier to accept. Also the fact that there are so many treatment options these days to manage it compared to 20 years ago. As a nurse I know there are numerous chronic diseases out there and many that are worse than MS. To me there is no point in having a lifelong pity party about it and would rather enjoy life as best I can.
Thank you for this post. I think I had high expectations for Ocrevus, and now I am frustrated that Ocrevus did not live up to them... I will try to work with your position.
I have held expectations for DMT'S and have had expectations for all the DMT'S I've been on which has been most of them.
I seen my doctor last week and been on Ocrevus for just over a year and this is the first time in the last 8 years that I have not had any new lesions. I'm not calling it a miracle drug because all of my current lesions have gotten worse but it has given me a new starting point to work from and the most positive feelings I've had in a long time.
I'd like to thank everyone on the site to fill the void until I got to this point. New to the site or long term member Thank You all.
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