Stem Cell Transplant for Multiple Sclerosis

My name is Niamh. I am 24 years old and 4 years ago I was diagnosed with Relapsing Remitting Multiple Sclerosis. Unfortunately for me my MS has been highly active. Even though I have a Relapsing Remitting form of the disease I have never experienced any period of remission but plenty of relapses. Over the last 4 years I have been on 3 Disease Modifying Treatments (DMTs) none of which I have responded to. As a result of this my condition has deteriorated greatly over the years and I now go between a walking stick and a wheelchair all of the time. To stop my condition getting worse my Neurologist has put me forward to have a Stem Cell Transplant (HSCT) because there are no stronger treatment options left. I will have to travel to London to have this done as it is not available in Ireland as an MS treatment. The transplant itself will be paid for by the NHS but there will be a lot of additional costs such as travel and accommodation as I will have go over and back on a few occasions. Since there is chemo involved I will loose my hair so money raised will also go towards the cost of a wig. So the story that got me to the point of needing a Stem Cell Transplant started in Dec 2014. I had persistent pains and needles in my right leg. I went to my GP who, after bloods tests, treated me for a vitamin B12 deficiency. That cleared up the pins and needles for a few weeks but by March they had returned at which point my GP suggested I go for a private MRI scan so off I went. At the time I was so naive and though it was just a trapped nerve in my leg. A week later I went to my GP for the results and it was then I was introduced to the world of MS. I was referred to a neurologist straight away and was very lucky to be seen quickly, a few tests, MRI scans and lumbar punctures later I got my official diagnosis on 7th July 2015. I was put onto Rebif which is an injection 3 times a week. Unfortunately however by Feb 2016 I had to start using a walking stick as my right leg was getting increasingly weak and foot drop was creeping in. Eventually it was decided rebif wasn’t working so it was time to move onto a stronger medication. So around August 2016 I went on Gilenya which was 1 tablet every morning. In April 2017 I went to hospital for a routine appointment to met my neurologist. When he saw my walking and how much I had deteriorated he would not allow me home. He kept me in hospital for 2 weeks for a course of steroids and physio etc. Giving the increase in disability and new activity on an MRI scan it was time for to try out one of the strongest medications I could go on which was Lemtrada. Once I came off Gilenya I had to wait 3 months before starting Lemtrada for a wash out period. It was in this time that my walking became so bad that I had to get a wheelchair as I could not stay on my feet for any longer than 15mins without my legs turning to jelly and being totally exhausted. Lemtrada is an IV medication which is given over 2 years. Year 1 is 5 days of IV treatment and then year 2 is 3 days of IV treatment with the aim of it stopping progression for several years after. It comes with a lot of very serious side effects such as risks of developing other autoimmune conditions so for 6 years I would need to have bloods and urine tested every month to check for signs of these conditions developing. I felt it would be worth it to stop my MS getting worse. So in July 2017 I went into hospital as an inpatient to receive 5 days of IV medication (Lemtrada). I tolerated treatment very well and felt good. But in May 2018 (2 months before round 2) I had a relapse where my left arm went numb. Lucky a course of steroids cleared that up. I went back for round 2 in July 2018 as planned and again I tolerated it well. At that point the hope was that my treatment was finished and my condition would not progress for years. Unfortunately in Feb 2019, just 7 months after round 2 I began to have a relapse where my left leg (good leg) began to get increasing weak making walking even more difficult. I went from only using a walking stick when I was out and about to having to use the stick going around the house. I became far more dependant on the wheelchair than I had been, rarely leaving the house without it. A MRI scan in May showed there was new activity there which meant Lemtrada had not worked as hoped. It was then my Neurologist told me that a Stem Cell Transplant may be the way to go as I am not responding to the DMTs. In June I travelled to London to meet a neurologist who deals with HSCT and he is happy that I meet the criteria. I am now awaiting word of a date to start the process. I am hoping to hear in the next week or 2 at which point I will post an update. Anyone who knows me knows that I am a very proud person and setting up this page was a struggle for me but sometimes you just have to ask for the help. Any donation no matter how small would be greatly appreciated and help massively on this journey. Thanks so much for reading my story.