Hi everyone, I just wanted to put it out there and ask the powers that be, why there is a place for people with SPMS to post things.
We’ve got everyday living, symptoms and treatment, PPMS and more but nothing for SPMS, I end up posting on PPMS as too be honest when I read things on that sight I feel it’s more me, but it’s not, if that makes sense, so can someone look into this.
Jean
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should have said why isn’t there a place.
Hi Jean
Just wanted to say hi and hope you are doing ok xx
Pam xx
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Hi Skippy16, Pam I’m not too bad, plodding on as we all are.
Hope you’re doing ok, just hoping someone in admin can answer this,
Jean x
Hi Jean
I’m doing ok’ish thanks but longing to see the spring. Sorry I don’t know the answer to your question.
Pam x
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Once upon a time, different “flavours” of MS were thought of as being more different than they are now.
Once someone has transitioned from RR- to SP- MS, they have more in common with PP- than RR-
Perhaps we should move with the times and replace PP- and SP- with just “Progressive”? Particularly on forums.
The next wave of meds, anti-CD20 (e.g. BTKi -brutinib variants) and anti-CD40L (e.g. Frexalimab) monoclonal antibody treatments will be relevant to all types of MS.
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Well I have to say @GCCK I totally agree with you, before I was diagnosed I lived with a lot of symptoms that I had no idea was MS, just got on with life, then in September 2006 that was it, too big a symptom to ignore, after scans said possible MS and then other tests confirmed it I was monitored for 18mths only to be told SPMS and there’s nothing we can do and to be honest where I live in Yorkshire this has pretty much been the attitude, I’ve asked about treatments, just to be closed down. I read some of your posts and it sounds like you’re doing pretty well where you live, but sadly it’s not the same for all of us.
Thanks for your input, I will look at those meds,
Jean
Hi Jean,
Interesting that you were diagnosed SPMS with no history of RR-. I went straight to a Progressive diagnosis (from un-diagnosed / mis-diagnosed) but with indecision as to whether it was SP or PP. Apart from some unexplained episodes which could have been sciatica, I couldn’t accept that they could be considering SP with no history of relapses. Eventually she settled on PP but only after doing nothing for a couple of years. “Watchful waiting” she called it. Yeah, right… Then I switched NHS Trusts and the current ones is brilliant, very can-do.
The BTKi meds I’ve referred to are well into phase3 clinical trials, so won’t be available on NHS just yet. There may be a phase 3 trial for Frexalimab - worth keeping an eye out but check out qualifying criteria (age, EDSS score, history) before getting too excited.
Graeme
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Hi @GCCK, Yes that’s something that’s always got me, SPMS and I couldn’t honestly say I’d had any relapses, I have to say at the time even the physio I was seeing said to me “who told you, you were SPMS” that would be the expert at Seacroft Leeds, thinking: now I’m not so sure, I think like you and a lot on here, I was properly PPMS to start with, but what can you do when you can’t get an appointment/they don’t want to listen.
So here I am, SPMS, going down hill, only on Baclofen for the MS and nothing else for me 
As I always say, keep smiling and carry on, take care,
Jean
Listen I appreciate your reply and take on about the meds you are mentioning
Hi, I thought about my reply to you Graeme and I suppose going on the evidence they had, me loosing sight in my right eye age just 30yrs, balance issues, dropping asleep for no reason during the day, maybe this all pointed to RRMS, the eye issue I had was the only thing I got checked out and was dx’d with Iritis, the opther issues I just ignored, silly maybe, but I’m glad I never knew until I was dx’d aged 47yrs, that’s 20yrs ago now.
Jean
Yes, on balance, like you I’m glad to have been left in ignorance for a long time.
Whilst my care has been good, I’ve not responded well to any meds apart from baclofen and some supplements, so physically would have been in the same position as I am now. If I’d had the label of MS in 2012 (9 years before diagnosis), there are decisions taken that perhaps I wouldn’t have been so bold about.
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Same here with the meds Graeme, I did take Gabepentin for a while, stopped working, Pregabalin made me feel depressed and I’m not that kind of person, so Baclofen and suplements, mindfulness, cold and heat pads, stubborn attitude and a bloody good hubby.
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You absolutely have the right to discuss your concerns and any research you’ve done with your doctor. It is your health, and after 5-6 years of feeling unwell, you deserve to be heard. Many people find it helpful to bring a written list of these symptoms and how they impact your daily life to the appointment, as it helps the GP see the full picture. Don’t be afraid to advocate for yourself.
Hi @jakasspeech5 , thank you for your reply, but I think you miss understand my original post, I’m wanting to know why, on the MS forum there’s nowhere for people with SPMS to post, there’s everything else, but nothing aimed at SPMS, so I end up looking on PPMS.
Jean