Katy Shields - nipping MS in the bud with HSCT!

After years of battling with doctors, a mountain of misdiagnosis and lots of pills and antidepressants offered, on 7th February 2021 I was finally diagnosed with Remitting - Relapsing Multiple Sclerosis. 


What is MS? 

Multiple Sclerosis is a disease of the central nervous system where the body’s own immune system starts to attack and damage the myelin sheath around nerves. It's a life long condition that can cause a vast range of problems such as severe fatigue, difficulty walking, vision problems (sometimes blindness), weakness in the bowel and bladder, numbness or tingling in different parts of the body, muscle stiffness and spasms, problems with balance and co-ordination, problems with thinking, learning and planning and can sometimes cause serious disability (wheelchair bound). 



My MS Journey 

With two misdiagnosis and lack of support from my ex GP, the process was prolonged and delayed the true diagnosis of Multiple Sclerosis for years.


I knew something was wrong with my body but things started to noticeably effect me when I had to give up the sports I loved and had done from a young age. I didn't have the energy to keep up and my pain threshold went from 100 to 0 within a few months. I could no longer bare being touched, never mind punched. Then the relapses began! 

My Relapses 

What is a relapse?  - it's a relatively sudden (over hours or days) episode of new symptoms or a worsening of existing MS symptoms. It can take months to recover, but 100% recovery isn't always guaranteed!  

To date, relapsing is the scariest thing I've been through - both my 2017 & 2021 relapses left me hospitalized, partially sighted, struggling to walk, struggling to stay awake, zero energy to stand or get washed, no appetite and general confusion. 

My body does it's very best to recover but there is irreversible damage being done to my brain every time I relapse. I recover fully at the moment  but this won't always be the case, unfortunately. Full recovery is highly unlikely to continue the further the disease progresses.  Once the myelin around the nerves is damaged, its damaged forever, this causes severe complications like permanent damage to the eyes causing partial (sometimes full) blindness, spasticity, and disabilities such as the inability to walk.

Day to day life with MS can be a struggle and everyone's journey with this cruel disease is different. 

Every day I live with:

 - severe, consistent joint & muscle pain
- muscle spasms all over my body
- acute fatigue
- brain fog/ lack of short term memory
- my balance isn't what it used to be (for an ex gymnast this is unnerving)
- slight weakness in my left hand & arm

Everything I knew about myself - great balance, super fit and sporty, confident on my feet....is slowly slipping away from me and it's truly the scariest thing I've ever been through in my life.

The thought of perhaps never being able to work is the hardest part of all for me. To give up Bounce N Bound, the business I've worked so hard over the last 11.5 years building up, would be heart breaking! My job is my absolute world. To think about losing the ability to walk through the woods or hike up the hills with my pups by my side is simply soul destroying but, without trying HSCT, perhaps the reality of my future.

Treatments

Luckily, MS treatments have progressed greatly over the last ten years with Disease Modifying Drugs (DMT) that can slow the progression of MS down. However they do only slow the inevitable down and they all have serious side effects. I take Tecfidera twice a day and that seems to be working well for me at the moment but I have stated it will be the only DMT I take, instead I will choose (if I can raise enough funds) another type of treatment called Haematopoietic stem cell transplantation (HSCT).

HSCT is an intense chemotherapy treatment for MS which aims to stop the damage the disease causes by wiping out and then re-growing a new immune system, using your own bone marrow stem cells. Unfortunately, here in the UK, this is only offered to people who meet a certain criteria where MS has progressed severely and in many professionals opinion it's too late, the damage is done! If HSCT is performed early (as close to diagnosis date as possible) it has a much higher success rate in halting the disease altogether and give people, like me, a high chance of getting their lives back.


So, I've decided this is the route I'd like to go down in the future. I will have travel to Russia to have the treatment done, which unfortunately costs around £60,000. To raise some of these funds my friends & family - my team of MS Beaters! - and I will be setting ourselves an array of challenges, up to now we have; 

·       Dundee – Lyon – 1000 miles (1042 to be precise!) -  The BNB walkers & I will be banking the miles in every day on our walks for the next year to hopefully reach our target

·       Walk the West Highland Way

·       Munros 

·      10k runs

·     Kata with Papa – my Dad and I will relearn, perfect and record our Shotokan Katas for your entertainment

·     Chris will be doing a 1/2 marathon 

And hopefully lots more and for as long as my legs will carry me! We're aware this will take time, (hopefully that time will still see me healthy and on my feet) but that's ok! We're asking for your help of donations & support to spur us on and reach our goal in kicking MS up the arse!

Please add my Instagram page - because_i_still_can for all our fundraising antics 

LETS DO THIS!