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?