Just been to see the Neuro, nice bloke, had a few run throughs in terms of balance, coordination etc… now been told I have progressive MS! Only been diagnosed 6 months ago with RRMS! WTF! What f**k happens now!
Hi Chris zara…I’m so sorry…I.hope u r as ok as u cud be…how have they gone from rrms to progressive in 6 months if u don’t mind me asking? I was diagonised 6 months ago also. I hope u have some good supportive people around u…
What happens now is …………………
Nobody knows, I’m sorry. I’ve had progressive MS for about 4 years now and all I can tell you is what has happened to me but it wouldn’t tell you much about what will happen to you.
As far as medical intervention goes – there are no DMDs for a progressive condition – only things to help you manage symptoms.
Although it’s a lot to get your head round – and you’ve only been dx two minutes the thing to do now is to make adjustments to your life to accommodate your diminished abilities. Unlike RMMS your symptoms are not going to get better (they may stay the same for ages though) so in many ways it’s easier to adapt because you are not hoping in the back of your mind that next month you might not need that walking stick/handrail/crutch. Although it sounds crazy a progressive condition is easier to manage than one that fluctuates widely.
These boards are a great place to find coping strategies and practical advice for just about any symptom. There’s always someone who has been there already.
Keep your chin up. Once the panic subsides you can get on with living.
I think there’s a pretty big assumption that it’ll be RRMS as it’s the most common kind of MS so it’s likely to be that! I wish I’d been warned it might be PPMS from the off as I went to the 2nd appointment armed for battle and having a pretty clear idea what DMD I was going to opt for… instead I politely asked for physio and a nurse whilst just quaking in my boots, it was my worst fear and it happened.
I was only 3 months between initial Dx and being told PPMS, basically the steroids only fixed one minor thing and I’d had no expectation of an MS Dx at my first appointment, I thought I had a trapped nerve! The thing my neuro said that I felt was taking the word out of my mouth was “it kind of crept up on you didn’t it?”.
And that’s kind of the good news, if it’s not aggressive, it creeps… We’re not so likely to have the same fear inducing relapses that RRMS peeps have. I try to stay positive that I won’t just spiral! Obviously there’s no guarantees tho.
LDN (low dose naltrexone) is the only treatment I take, everything else from the NHS is puely combatting symptoms - go look at the LDN trust website and see some of the conversations in the PPMS section about it
Take care Chris and come say hello in the PPMS section, we don’t bite