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@milliepipkins 

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milliepipkins

RRMS to SPMS

I have RRMS and was only diagnosed with it 5 months ago. I have never really worried about the progression or transition of my disease as I am just trying to survive as I am, but the more I research, the more panicked I get. I know it is inevitable that one day, I will progress into SPMS and it terrifies me. I am only 20 years old and never imagined that this would be my life now. What is everybody's experience of SPMS? I am aware it differs from person to person, much like RRMS, and I have read that the development of DMD's is supposed to delay the onset of "disability", but I also understand that there is no form of DMD or medication once you have SPMS.
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@Vixen
@Vixen
 

Hello lovely @milliepipkins. You’ve been through an awful lot this year, your life has been turned upside down. They’re is no set path regarding SPMS, just as some people who are RRMS sometimes have a rougher time than someone with PPMS, and some are diagnosed and go for 50 years with no difficulties at all. There is no rhyme or reason to this condition. But you can focus on the positive by looking at the whole picture. 20 years ago, there was not a range of DMDs, and people were beginning to be diagnosed through use of MRIs. 40 years ago, none of those things exisited. Things have really accelerated since then. Recently, the worlds first DMD for PPMS became available for the first time ever. There are treatments being trialled for SPMS. Cambridge is a leading light In remyelination studies. So, if you jump to 20 years time when you are only 40, things in the world of MS will mean the world is a completely different place. That doesn’t help you right now, and it’s right and appropriate that you are very anxious. It’s horrible what has happened to you. The process of digesting it and fully coming to terms with it is going to take a while, as it does for us all. You need to focus on making every day as high quality a day as you are able. At the moment, it’s about getting through each day and trying to be as healthy as possible. It’s easy to write yourself off, but you have a whole future ahead of you. It’s just that yours isn’t quite lining up in the way you thought it would. You must still aim for the same things, but accept that sometimes you will need to take a different route to get there. Be really kind to yourself and give yourself lots of treats, which you really deserve. There is lots of support for you here, stay strong, it will be OK x

@FXMS
@FXMS
 

Great message @vixen!. @milliepipkins: I was just diagnosed with PPMS and I feel the same as you! Let's hope that remyelination becomes a reality sometime soon!