“I’d run out of treatment options and had three relapses in one year”

Tina Caldeira had HSCT in 2019. This is her story

I was formally diagnosed with relapsing remitting multiple sclerosis (MS) in 2013, although my first neurological symptoms occurred much earlier. I experienced episodes of optic neuritis in 2004 and 2005, but MRI scans at that time were normal. Given my background as a physiotherapist and a family history of MS – my mother lives with MS – it was always a concern.

Between 2010 and 2013, my symptoms gradually progressed and included fatigue, numbness, and pins and needles. I experienced clumsiness in my left hand, significant fatigue, headaches, visual pain, ataxia, left foot drop, and neuropathic pain in my right leg.

During this time, I also developed significant depression. Following diagnosis, my MS became more aggressive. By 2018 and 2019, despite treatment, I experienced multiple relapses, increasing mobility difficulties, neuropathic pain, brain fog, and fatigue. My Expanded Disability Status Scale (EDSS) score rose from one to 4.5, and day-to-day life became increasingly difficult. This affected my ability to work, walk distances, and function reliably.

Before HSCT, I tried multiple disease modifying therapies. These included

Copaxone, which was stopped due to severe injection site reactions
• Avonex, which caused significant flu like side effects and I experienced a relapse while on treatment
• Daclizumab in 2016, which was very effective for me but was withdrawn in 2018
• Mavenclad cladribine, where I was only able to complete year one due to prolonged lymphopenia, and I experienced several relapses during this period

I did not meet the criteria for Tysabri due to a high JC virus titre, and Ocrevus was not yet licensed at that time.

I had run out of further treatment options and experienced three relapses in one year, with seven new lesions. This was when my EDSS increased from 1.5 to 4.5.

I was accepted for HSCT on the NHS by a multidisciplinary team for treatment at Barts and The Royal London. However, BUPA agreed to fund the treatment, so I underwent HSCT at London Bridge Hospital.

My MS progression has halted, as has my rheumatoid arthritis (RA), and I am now six years and three months post-transplant. I no longer show signs of active inflammatory RA and have not required disease modifying medication since HSCT. I do have residual joint damage from before treatment, which I manage with simple analgesia. I understand that remission of RA following HSCT is not always permanent, but for me it has been sustained so far.

My EDSS is now three, although it has taken a long time and a great deal of ongoing work to reach this point. Even in year five, I continued to make progress. I genuinely believe that neuroplasticity remains possible, but it requires consistent effort through physiotherapy programmes and reducing stress and inflammatory triggers. I changed my employment to work for myself, which was a risk, but it has paid dividends in helping me manage stress.

Rehabilitation was a priority from the outset. Even during my HSCT admission, I worked daily with physiotherapists to maintain movement and fitness, and to set achievable goals.

Key factors that helped reduce my EDSS from 4.5 to three over time following HSCT included

• Consistent physiotherapy and functional exercise, focusing on balance, strength, gait, and endurance
  • Gradual progression with walking distance, stair climbing, sit to stand, and floor transfers
  • Pacing and energy management to reduce fatigue crashes
  • Stress reduction, leaving hospital based work to work independently and choosing my own hours was pivotal
  • Regular exercise, both at home and in the gym, adapted to my capacity
  • Dietary changes, including a cleaner diet with minimal ultra processed food and reduced gluten and dairy, not restrictive but intentional
  • Accepting that progress was slow and non-linear, with consistency being more important than intensity

I found support before and during treatment through HSCT Facebook groups. Mindy Watt is a well-known figure within the community and a fountain of knowledge. I also connected with another woman who had undergone treatment shortly before me at the same centre.

That support was invaluable. It included practical advice, emotional reassurance, honest conversations about recovery, and being available during difficult moments. Peer support helped me feel less isolated, particularly while I was away from home during treatment. Since then, I have paid that forward by supporting others who are considering HSCT.

If I were to offer advice to anyone considering HSCT, it would be to seek support from people who have already been through the process and truly understand it. I would also encourage people to consider their options early, as earlier intervention may help limit long-term damage.

My family have been my biggest supporters. They are my reason to keep going and to keep living life fully. The staff at The Royal London Hospital and Guys were exceptional, particularly Dr Kazmi, who instilled in me the belief that I could get better and live my life again. And I have.

If you would like to know more about HSCT for MS, please read our newly revised HSCT Choices booklet, which is packed with information and the latest research.