Last reply 9 months ago
Moving to stage 2

Today I need some pumping up. After 30 years of RR I have moved to SP. I got used to it all and now I have to deal with all the new stuff. I know all the things I would say to myself if I were another person.
You are so lucky
Well at least you had thirty good years and some only have a few good years
At least you are walking
At least you still can think clearly

And I think that I want to punch them (I wouldn’t but I want to). Now I have trouble walking and always need my walker or a motorized chair. I can’t easily get out of bed, my bladder has no control and my bowel is now not very dependable. And I have pain.

And sometimes I ask myself why the medical community seem to have bypassed me. Rrms is big and progressive is important.

I think because I was in the 1st group. So we have fallen into the cracks.

Just ranting and feeling sorry for myself today. This is a safe place where people understand my situation.

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9 months ago

@avengr13 , this is far from the end of your book. It’s just the start of another chapter……..

9 months ago

I didnt reach your stage uet
Your case is impressive yeah
You lasted rrms for long
Everyone hopes it lasts
Im so afraid my situation change maybe its meant to be for everyone
I hope the same feeling about medical community
They can control the invisible mind a bit and control invisible thoights and mood by anti depressants but not the invosible major nervous system

I dont trust them in the first place i started
I started a treatment last month after stopping all treatments for 9 years
Was daignosed 2005
And feel guilty about it even hate the fact i gave in
But there r no options i know
But i troed to be independent off them for long at least
Not sure what drugs you’d been on
Or why drugs are you taking now
But hope you get better remember you’ve been strong for long and maybe you reverse it one day nothing os impossible

9 months ago

Dear @avengrl13 I had rrms for 23 yrs and have had spms for 18mths so I know exactly what your going through. I was totally on my feet (albeit slowly and a bit wobbly) and then wham! Bought a mobility scooter 20 mths ago, the then other half thought it was a waste of £800, we are no longer together after 43 years of marriage! Now on my own and better for it (probably) Belive me, he was my carer for 20 yrs but for the last 10 it was done out of duty not love so I’m pretty sure I’m better on my own. The NHS gave me a powered wheelchair a year ago, so between my equipment and the through lift and ramp that the council have put in, I’m sorted and can face the world on my own which is a good thing because I gave no-one, no family who speak to me, no carer, nobody. We can and will survive after all we’re mser and we have a sense of humour (which we need cos if we’re not laughing, we would be crying and that’s not good for the ms so anything that we can laugh at is good😍😛🤡

9 months ago

Hi @avenger13 and everyone else; I feel your pain totally. Everythin you say is my life.

It’s a shock alright – the constant adapting and changing; with no support when you need it most, is the biggest shocker

What are we to do, but always try and do our best (with minimal guidance, support help or understanding)

I’ve held it off for as long as I can, now am worn down and tired

When your quality of life is cormpromised constantly;
Its gets harder to stay positive and hopeful, so u get used to every day being challenging.

You don’t hear many people talking so frankly, honestly or bravely. Thank you for doing so. sadly until a cure is found everyone will eventually become secondary progressive.

(You don’t get it, until you get it. Walk in my shoes an all that)

The separating of the illness now seems to benefit the pharma, with the focus on the RR stage, instead of to explain all of the stages.

Until someone says they have taken a DMD that has given them more than 30 years without developing secondary progressive MS: then the debate is incomplete

A study into progression without any DMDs would be helpful and informative and helpful as well.

I did 23 years before it went SP and it’s only in the last few years it has been troubling me significantly.

There’s more people speaking out, as the-experts continue to manipulate their market with scare mongering (your ms is aggressive etc)

If this was a case of mind over matter, then I know we all would have prevailed.

But hey things could be better, but they sure a sh7t could be a whole lot worse so best make the. Best of it

Sending warm fuzzy feelings to all ✨x

And go girl [email protected] you’re stronger than doubleohuda n saves tea👍💕🧜‍♀️✨

9 months ago

@grandma @stumbler @mermaidia11 @nutshell88
I knew I could count on you all for some support 😘😘😘😘

And i did not say that through my ms career I have been on Avonex, Rebif, Copaxone and now I will get my second infusion of Ocrevus in December. Did they help me get through 30 years or would I be the same? I will never know

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