Last reply 2 weeks ago
HSCT UK

Hi, I have not visited Shift for a few years now, like another member said ‘trying’ to get on and lead a normal life without my head being consumed with MSsy things!
I had HSCT at Kings College Hospital transplant date 14th Feb 2018,
Ive two birthdays like the Queen only I wish I could walk as well as her Majesty!!!
Although relatively young 48 diagnosed with PPMS 2009,
I battled long and hard for three years almost with an MRI showing the slight progression of lesions needed to perform HSCT it took over my time my life with trips to London, emails etcetc, honestly having this condition feels like a full time job!
The treatment was not too bad, the worst being extreme diarrhoea due to cheamo and being high on steroids! The lovely nurses made the three week stay bearable and watching the Olympics all night!!!
I will be two years post transplant on Feb 14th 2020, it is by no means a cure but a recent MRI shows no progression in lesions and stable, my MS is all mobility related
I hope this is of interest to anyone looking to have this treatment in the UK, dont give up trying it can be a hard slog and if you feel your neuro is not on the ball then ask to be referred to one that is, my neuro at the time (I wont say where from only the South coast) did not even give me a yearly appointment
I would really love to hear from anyone else who’s been through this at Kings or due to have it done xx

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highlander
2 weeks ago

@loulou
I’m in the process of doing the same as you with the neurologist at least, but he is in partnership with Kings.
I’m glad it’s all heading in the right direction for you.


stumbler
2 weeks ago

@loulou , I’m too long in the tooth to be considered for such things. I just hope that this has halted your MS, so that you can work on recovering lost function.


seanachai
2 weeks ago

Congratulations LL…. it sounds like HSCT might be working for you and really glad to hear a PPMS HSCT story on here….

Its a very tough brave choice…. a dear friend is 8 months post and has ups an downs but on the whole nothing materially different…the first 6-18 months can be tough for lots of reasons given the treatment is essentially the same as skin cancer treatment (broadly)…

Halting is a miracle in my view…. any reversal defies positive words…

Halting while remyelination therapies continue to evolve is a good cocktail right now…. that said would love a reversal or cure any time soon…

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