My MS Journey
From Summer 2021, I noticed that my health was starting to go downhill.
I was falling over and dropping things but it was when my vision started to falter I went to see my GP and was referred to a neurologist.
The wait on the NHS would have been 8 months wait so my mum paid for me to see Dr Kennedy, head of MS dept at Chelsea and Westminster, privately.
After tests and an MRI, I was told I had Multiple Sclerosis.
He transferred me back to Chelsea & Westminster, where he was head of the department and put me back onto the NHS as he knew that I could not afford to self-fund.
Over that summer I had several challenges and starting treatment was delayed.
After starting, my physical health continued to decline.
My double vision was worse, my fatigue was debilitating and walking & balance were at a new low so I started using a walking stick.
I had to give up work.
My physical health was declining so my mum came with me to see my neurologist who agreed that the COVID vaccination had triggered my MS. I have looked into this further and have consulted a Covid vaccine lawyer who investigated my medical records which prove that there were no other symptoms before I had the Covid vaccine. This was hard news to swallow as I wholeheartedly believed that I did the right thing to have the vaccine at that time.
There was nothing that could be done to reverse this especially on the NHS.
She agreed HSCT (Stem Cell treatment) was the only real way to put my MS into remission.
I booked into to see a Professor & haematologist who told me that they agreed with my neurologist and that my decline had been very rapid in under two years.
Having received no further help from the UK medical team I decided to go to Mexico for treatment.
It is a world class clinic and I know a couple of people who have received successful treatment there and who are now living normal lives.
HSCT is stem cell surgery.
Your stem cells are grown and then they replace your old cells with new ones.
Your body should ‘forget’ it has MS and your have a new immune system put in place.
Basically it’s chemotherapy.
I have a chance to be ‘reset’.
Rid myself of any triggers and hopefully restart again.
My EDDS score (MS marker) is a 6 atm. I’m 1 away from a wheelchair.
I want to put this into remission and restart my life whilst I still can.
This has opened my eyes up to how difficult life is as a disabled person.
52 years as an abled bodied person to being thrust into this way of life and all from trying to do the right thing.
My North Star is Selma Blair who has had the HSCT for her MS, and has done a documentary about having the HSCT.
I’m lucky to have been in touch with others that have also had the treatment and I feel it’s the right option for me.
I need help as I have borrowed £60,000 to cover the cost of the treatment.
My flights have been £6000 as I need to make sure I’m as protected as can be.
I will spend a month in hospital then have to isolate for 3 months afterwards to make sure I don’t catch any sickness.
HSCT is not a treatment offered to Multiple Sclerosis sufferers like me in the UK currently. I have tried the DMT, the treatment offered by the NHS, but my physical health is still declining.
What HSCT would be able to do is put the MS in remission in hope that my body ‘forgets’. It will be a slow uphill journey but I’m willing to do it as this is my only hope of regaining my life.
It’s not a magic bullet and will take time to rebuild my strength but I am confident that I will be able to move forward from this.
The success rate is 85% and I personally know people who have been to Mexico for the treatment.
I’ve seen how much it has given them their lives back. Your support is very much appreciated to help me raise this money.