Just wondering if there is any hope for me left as I continue to live with my PPMS? I’m now 64 and have been asking for AHSCT since diagnosis in 2017 with no luck. I have tried for some time to get onto the current HSCT trials with again no luck. PPMS has long been the forgotten about type of MS and MS awareness sadly very poor. I have repeatedly asked for Famprya to improve my balance, help me walk again and have a quality of life worth having but again all attempts have failed. So I’m expected to exist just because I have PPMS, am over 60 and don’t have the right postcode. I have tried and tried to no avail. Had I been able to afford AHSCT privately at time of diagnosis I would have jumped at it irrespective of any risks I’m warned about. Sorry for rant but I’m upset and angry that as usual those with money or correct postcode or luck can have a life worth living
Well, if it’s any consolation Stem Cell Treatments don’t always work for long
I now can’t remember the details but when I first looked at them I fell outside the age for eligibility .
Apologies if this sounds at all dismissive of your situation but is Fampyra available to any one in England ?
Unfortunately none of us with MS gets a ‘Get out of Jail Card’ (monopoly card). Some are luckier than others but regardless of whether it’s PPMS or RRMS or SPMS are going to end up with some disability.
I use the DMT Avonex for RRMS but have slowly worsening difficulty walking. I do think that one thing we can all make use of is taking care of our diet and exercise ( lots of info around about good diets and exercise for MS folk however disabled they are). I now can’t remember where I read this but I think there is a general view that diet and exercise can be as effective as some of the older DMTs ( not sure if that is totally true but exercise and a brain healthy diet certainly isn’t going to do any harm and can only benefit general and brain health)
@Giova As always these things are a few years away but this might be of interest?
Yes but who will be eligible? All of us older people diagnosed after 60 no hope at all .Which I understand in a way as I would rather young people got access to trials and treatment first.However I don’t think we should be excluded from clinical trials on age as we have been in the past .Also we should not be defined as ppms .Lots of evidence to show no difference at a cellular level.These old fashioned labels of type of ms need to go as does the age limit for trials .Cancer patients at 90 are included in treatment and trials .Osteoarthritis patients have operations age 90 .( Successful I do a strength and balance class and because I can’t have treatment for my tight Achilles tendons which cause my foot drop my main symptom they recover and thrive having had hip knee foot ops ) Why are we ignored
I’m 69 and was diagnosed 20 years ago although I had symptoms several years earlier and was fobbed off by my GP until I had trouble walking. Progression has been steady. I can’t walk at all now. I can weight bear to transfer but actually getting to my feet is a struggle.
I’ve not been eligible for anything either, EDDS too high, too old or diagnosed too long.
There seems to be little to no interest in PPMS. My abrupt, disinterested neurologist, when he can be bothered to grant me two minutes of his time to do a review, not even annually, simply says “there’s no cure and no treatment.”
When I was diagnosed I felt he was telling me to go home, sit down and wait for paralysis.
I suppose I’m. Lucky in that I feel well and I’m not in pain, but I am tired, and I’m tired of being tired, and I’m tired of the daily struggle my life has become.
I’ve absolutely nothing to look forward to.
It’s about looking at the small things that might make you smile. Taking comfort from something that you still might be able to do or achieve no matter how insignificant it might be to others. I’m in my 60’s too @Flowerpot and I know that I’m nowhere near where I was 30+ years ago but, it’s my life and it doesn’t matter to others how I live it or what I can do every day.. or not if I don’t..or can’t. I was originally diagnosed with RRMS. At my last nurses review in November last year she was questioning if it was something else now and yet she seemed to think that the consultant would prescribe some kind of DMD treatment! Really? I honestly believe that it’s too late for that now. Never been offered anything in the past, although to be fair about it there probably wasn’t much available that far back. Unlike nowadays when virtually everyone gets on some kind of DMD treatment as if it’s a right. So, I’m probably on the scrapheap too. Well, that’s if I let it. But, I’ll keep fighting.. keep on doing what I can no matter how insignificant it is..or how small it is..or might seem to be too others.
Happy New year:)
I know I’m a bit late!
I’ve not been on this site for years, what’s the point? I don’t think there is any hope for PPMS’ers of a certain age! My hope is they are closer now than they have ever been, other poor b***ers won’t have to just ‘grin and bear it’
Take care M
What do you mean by a certain age? I’m in my 60’s
Hi @ Giova, I’m SPMS, diagnosed 20yrs ago, now 67yrs, full time wheelchair user, pain, chronic fatigue, bladder and bowel issue’s and on and on.
I have never been offered anything, never see a neuro, had a f2f with my MS nurse just recently, 1st time in 5yrs, nothing for me either, I personally think PPMS and SPMS are the forgotten ones, yes if you’re SPMS and have relapses there is DMT’s, but I don’t have relapses, I’m just progressing.
Jean
I feel so sorry for Ahna after all she has been through, it’s no consolation. I have friend with PPMS that i was on a drug trial who had AHSCT soon after dx about 12 years ago. He is still do very well, walking with stick, enjoying life, he is much much better than me. I know that it doesn’t work for all but I for the large majority it does, probably a higher % than most DMT,s do
Yes I feel like I’ve been left out to lonely rot away
I feel so sorry for Ahna after all she has been through, it’s no consolation. I have friend with PPMS that i was on a drug trial who had AHSCT soon after dx about 12 years ago. He is still do very well, walking with stick, enjoying life, he is much much better than me. I know that it doesn’t work for all but I for the large majority it does, probably a higher % than most DMT,s do
Hi Jean indeed PPMS and SPMS are the forgotten ones, I’ve said it for a long time. Compared to other variants of MS very few new DMT,s seem to be for either. Over the past year there at last was a bit of a focus on PPMS and a large trial was began looking for people to be involved in trials including for HSCT. I tried to get a place but as expected failed. Not long after I was too old to take part! Early aggressive intervention with strong DMT,s is the best way to treat MS and reduce disability. That is Professor Giovanonni’s expert view, he has been specialising in MS research and treatment for decades. Throughout the years before my diagnosis I was told by the Neuros to wait and see whilst my MS was doing its stuff
Hi @ Giova, Yes I read an article many years ago in the MS magazine starting that some specialists thought it better to start DMT’s straight away to help slow things down, but for us that never happened. I remember the neuro I saw with regards to DMT’s , he monitored me for 18mths, then told me I didn’t qualify as I didn’t have relapses, I just progressed, he also said sadly I can’t tell you how fast or slow it will be, my answer, does it really matter I’m going to progress anyway.
As I mentioned in my last reply, I had a f2f with my MS nurse, 1st in 5yrs and in that meeting after she’d told me again that there was nothing for me, I told her how angry I was for not be allowed to have at least tried DMT’s, ok they may not have worked, but at least I could have tried.
I also knew a lady that had RRMS, she was on DMT’s, when she turned 60yrs, they took her off them, saying that she would no longer benefit from them, within month’s she had so many relapses, disability came on very quickly, then they realised what they’d done wrong and put her back on them, but by then it was too late, damage done.
So now for me I have no faith in the powers that be, I just do what I can for me.
Take care of yourself and keep 
Jean x
Kind of sums up what to expect with PPMS. No seems to give a toss and hide behind the nothing more we can do screen
Me too. I’m 69 and feel like I was written off 20 years ago when I was diagnosed.
No matter what we say or do an excuse will always be found as to the reason why we are just left to rot away. No MS charities or medics apart from Professor Giovannoni, semi retired now, take up the gauntlet. If I could afford it I would seriously consider Dignitas My wife of 27 years back then started divorce litigation soon after my dx. I lost my job I had for 27 years. As each week passes more and more so called friends and acquaintances distance themselves from me. I fear for the “future” cause I cannot look after myself, feed myself and keep myself clean. What is the point of this? No one gives a toss. I wish I were brave enough cause I have had enough of PPMS, loneliness and struggling. Without a significant other or loving spouse this disease is impossible to live with IMHO. All I do everyday now is have the odd phone conversation and watch appalling tv. I go to bed as early as 17:30. This is NO LIFE. I’ve just had the worst Easter I’ve ever had
I feel for you. I’m 69 and have no family. My husband went into a care home 6 months ago with Alzheimer’s. Until around 3 years ago he’d been my carer. It’s been tough and the days I didn’t wish I was dead were the days I wished I’d never been born.
I’m deteriorating and feel there’s nothing to look forward to other than advancing disability and dependence.
I have a small number of good friends but I hate asking for help.
A number of so called friends dropped us after my diagnosis, and some more after my husband’s diagnosis.
Message me if you want to talk, I’m a good listener