Last reply 6 days ago
RR and SP

Is SP always inevitable? I am a worrier of things anyway. I was recently reading all these posts of MSrs who after 20/30 years of RR, transitioned to SP. it sounded grim as if inevitable. I have had MS for 20 years and just now went on Copaxone. But I gotta tell you I have never taken care of my MS all these years and it shows on my MRI. I had no idea all the activity that was happening. I must say I am not feeling the best and I keep reminding myself that maybe the Copaxone is not necessarily meant to make me feel better but maybe it will help behind the scenes. I’m not sure if I’ll ever feel better I am so exhausted and I feel maybe in some form of denial as I haven’t changed my lifestyle as I should. I just wondered about the SP inevitability, how common is it? Is there ever a time that chances of that drop?

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stumbler
1 week ago

@angieh , there’s not a clear answer to your question.

It is hoped that, with the efficacy of current Disease Modifying Therapies (DMTs), transition to Secondary Progressive MS (SPMS) may be postponed indefinitely.

Our brains seem to have a certain amount of reserve to recover from relapses. But, when this reserve is exhausted, then we seem to become SPMS.

You can read all about SPMS here :-

https://support.mstrust.org.uk/file/store-pdfs/Secondary_Progressive_MS_2017.pdf


peterfrancis
1 week ago

Hi @angieh I was diagnosed with SPMS a year ago, my SPMS was deemed as Rapid SPMS as a lot of my symptoms all started to hit me all at once, mobility / balance being the primary issue.

As I also have Type 1 Diabetes to contend with, had it since age 11, looks like I may have seen some instances or symptoms of MS as Diabetic Hypo attacks. So, looks like I had RRMS without knowing it, for years.

From what I understand, RRMS leads to SPMS, it’s all about time and treatment.
It may take years and years for SPMS to show up.

The point of Treatments are to slow down the disease, so some people may never experience SPMS… lucky buggers.


mightymichymac
1 week ago

Funnily enough I was researching this over the weekend!

I was reading somewhere that it used to be around 90% of people with RRmS would progress to SPMS but due to DMDs/Vit D/etc the rate could now be around 40%!

Lemme have a nosey online and find where I read that!


lightning87
6 days ago

This is something I have wondered about too. If it’s inevitable, well then it’s inevitable I suppose. I haven’t changed my lifestyle since my diagnosis but I know I should.

Unfortunately no one has the answers for what is going to happen for you but I say live your life, have that cake or beer in moderation and do things you only dreamed of doing.

No one knows what is around the corner tomorrow never mind in 10 years. Even for the non-MS patient.


grandma
6 days ago

I don’t think it’s inevitable, there used to be a couple of old dears in our local ms group who were 70’s/80’s had had the beast for 40 years, and never got beyond the stock stage, and to be quite honest I don’t know wether the walking sticks would have been necessary ar rgeir age anyway! They were obviously dxd long before dmt’s were available, so .I reckon it’s just chance and bad luck if it progresses, so there is hope.😍


lightning87
6 days ago

This is true @grandma I suppose we just don’t know really!


cameron
6 days ago

I worry too but decided I had to channel thoughts into finding out what might prevent or delay it. Coming to terms with symptoms of depression has been part of this. Spiralling worries, feelings of panic or doom were fairly frequent so it had to be dealt with. Given a choice, I wouldn’t be exercising or watching what I eat particularly. But I don’t feel there is a choice. xx


angieh
6 days ago

Thank you for the responses. I know you are right, in that ‘who knows’. I suppose on bad days it’s normal to have extra worries. Especially as in this case, I do not seem to have bounced back from last relapse as well as I used to. Thank you for reminding me to live my life and stop Catastrophizing!


sam10
6 days ago

@stumbler
Thank you for above link (book).
I got correct answers for my questions.

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