Last reply 9 months ago

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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9 months ago

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

9 months ago

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!

9 months ago

I was daignosd in age of 17 2005
Never been on DMD I’ve been full of my good health a wee bit because I wasnt getting any relapse for long time like once every year or several years. I’m still RRMS

Now I’m stuck with a relapse that worries me im afrsid i step to spms by a relapse like this ._,

But I still cant get the idea of DMD’s in my mind
Im 30 years old now

9 months ago

But dont ever think thst MS is dtopping your life itself
It just makes in a slow motion a bit but it can never stop your plani was in highdchool when i was daignosed o graduated 97%
Then graduated uni
Then moved to the uk to study English snd I was planning for masterd but i couldnt
I was studying and volunteering in freezing scotland but im ssudi arabian girl
Now i have a job in here part time
Not becsuse i csnt but becsuse its not easy to find a full time job these days

9 months ago

@vixen “…things in the world of ms will mean the world is in a completely different place.”
I love this! What a beautiful outlook! <3

9 months ago

@milliepipkins While there no way to know what the future holds, in our family we are trying to hedge against problems as much as we can even if that means a few extra items right now. Consider reading the overcoming MS book. It has some good ideas on things from diet and exercise that are likely to improve your odds. Nothing is for certain but its based on good research and its worth a read. My wife is also on Tecfidera which so far seems to not have any major side effects except for the first few weeks (which were miserable).

9 months ago

@vixen amazing post x

9 months ago

I now have spms (they think) but that is after 25 years. When I was dxd there were no dmt’s and it really was a life sentence. They told me that it would become spms in 10-15 years. It took 23, I was put on Avonex as soon as it came out (In fact I was on the original trial) and it worked for me for 23 years, and have just changed to Tecfidera, But things are so different now, it is no longer the life sentence it used to be, you are on a DMT so your progression is likely to be totally different. I am 62, have had the beast for those 25 years, but an awful lot fell into place, (going back to childhood even) and I’m still here, still fighting, gave had a great life, am a mum and Grandma, have lots plans for the next few years. So don’t despair, keep positive, don’t let the bug….get you down😍

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