Returning to work has been good in many ways. I have found it more tiring than expected- getting used to early mornings again has been a challenge and I’ve been thankful for a 4 week phased return.
All our lovely students have welcomed me back and this gives me a warm sense of belonging 🙂
I don’t need to wear a scarf anymore so I’m trending a pixie look now.
On the 21 sept and 12th October I have been reviewed by the MS team and the HSCT research team. MRI, 9 hole peg test, walking at speed, reflexes, cognitive tests and of course blood tests repeated for the research data. Hoping that the MRI results will be shared with me but uncertain if this is the case as these are to be sent to Dr Burt’s research team in Chicago.
International symposium on HSCT in MS
Attended this event at the Neuroscience institute at Sheffield on the 14th. I met with some of members from the HSCT UK forum on facebook that have supported me through my journey. Unlike me some of them have not been fortunate to have HSCT in the UK -partly because of unhelpful neurologists who have been reluctant to entertain the idea of HSCT and partly due to their diagnosis of secondary progressive MS. Russia and Mexico have been their chosen sites abroad for their treatment. One other individual had his treatment at Kings in London.
Mindy Whatt had secondary progressive MS- she was the 5th person to go to Russia from the UK. Her condition is much improved in balance and walking. She is 18 months post treatment.
For anyone considering treatment abroad the experience has been a positive one for most -in terms of the care and expertise of the teams involved.
The frustration is that so many people are seeking HSCT abroad due to the lack of knowledge of some Gp’s and Neurologist’s across the UK – people are remortgaging their houses, taking out loans, and fund raising their way to health and to a future without MS. This does not seem fair.
The symposium was attended by Heamatologists and Neurologists across the UK- so it is with optimism that I hope the message of HSCT will be considered more favourably in the future.
The debate on patient selection in terms of their diagnosis RR, SP or Primary progressive is still met with opposing views. Dr Burt holds the view that secondary progressive MS which maybe typical of MS ten years or more – should not be treated with HSCT although individuals having active lesions with inflammation may reap the benefits of HSCT. Dr Burt states individuals should be reviewed based on MRI presentations. Other physicians based in Sweden- state that MRI alone should not be the only measure- lumbar puncture examination can determine levels of the harmful lymphocytes which cause the progression if the condition. Post HSCT 10 years on the T8 /CD8 levels remain low and is one biomarker indicating ongoing remission ( dare I say cure) of the condition.
Another news point is I am joining others to start a HSCT charity which will support and maybe help fund others through this wonderful journey and give people their life back – a life without MS.