https://www.gofundme.com/another-ms-warrior
We have a GoFundMe page!
I haven’t worked out how to add an official link to my fundraising page but hopefully this will do for now.
Please share wherever you can – I am grateful for all donations, whatever the size. Please only give what you can afford.
Thank you ???
Today I am going to swallow my pride and ask you for help!
After hours of discussion and research, i have come to the decision that HSCT is the way forward for me – I believe this is my only hope of halting progression of my MS and preventing further damage to my brain and spinal cord.
It’s looking likely that I will need to travel abroad for this and it comes with a big price. We will be launching a fund raising campaign soon, using a crowd funding page, but we know this alone won’t raise the funds needed.
We would like to organise some fund raising events – an evening of music and food, sponsored challenges, auctions and raffles of high value items and anything else we can think of ….I really am open to ideas.
We are going to need some help to get things up and running …
??♂️ Would you be willing to do a sponsored event? Run a marathon (or a 10 or 5 K), take part in a bike ride, a sky dive or even a sponsored silence or head shave?
? Would you be able to help with event planning?
? Do you have access to a venue we could use for an event?
? Do you know someone who sings or is in a band and would be willing to donate their time (or for a very small fee)
? Can you help us cater for guests at a fundraiser?
? Do you have anything you could donate for auction or as a raffle prize. Would you be willing to give some time to contacting business for donated items?
? Would you be able to design me a campaign logo?
? Do you know someone who could print leaflets at low or no cost?
? Does anyone have connections to the media – local paper, website, radio?
? I also need someone with money/maths sense who will monitor the funds and help us maintain accounts.
? If you were willing to be part of my fundraising team that would be great or maybe you would like to volunteer for one event?
? If you have any other fundraising ideas or anything else you could offer, or are willing to help in any way, please let me know ?
Today I had a visit from an occupational therapist and a physiotherapist from my local Team for Adult Rehabilitation (STAR). What amazing people they were – so thorough, kind and helpful.
They advised me on walking stick height, exercise to improve balance, welfare rights, work life balance, issues with parking at work, slippers(!!), fatigue, vision and the importance of staying active. They are arranging for a hand rail to be fitted in my bathroom and have given me advice on walking up and down stairs. They were sympathetic and supportive when I became a little tearful.
I am keen to improve my general level of fitness (and to lose some weight) and am to be referred to a supported scheme at my local gym (funded by the NHS). I am also being referred for counselling.
I am amazed at the level of support available to me and feel so grateful that I live in a country that provides this safety net for people experiencing difficulties (I know we don’t always get this right for everyone). I struggle so much with asking for help but they totally understood that feeling. They encouraged me to make decisions for myself on my next steps and reassured me that accepting help enhances my independence, rather than reducing it.
Losing my independence is the thing I fear the most and they were able to help me to see that I can use this feeling in a positive way, to give me the determination to keep living my best life!
Pharmaceutical companies, 
I thought it would be a good idea to document my efforts to access HSCT (or “stem cell transplant”) …
I am a member of an online group that supports MS-ers to access HSCT both in the UK and abroad. Through the group I heard of a haematologist in Liverpool who has treated a handful of MS patients. I managed to track him down and get in touch with his secretary, persuaded my GP to refer me and was allocated an appointment in August. I was in contact with a few other MS patients who were exploring this route and we were sharing information and ideas and generally providing moral support. We were all super excited to be taking out first steps towards beating MS.
Then, one day in July, we all received the bad news that Liverpool was not going to be taking on any new MS patients and our appointments were cancelled. This was devastating news – I really had thought that this was my best hope of getting HSCT in the UK.
Knowing that the Liverpool haematologist had initially started treating MS patients within existing budgets, I began to wonder if there were other haematologists who might also be doing this, or who might be willing to consider it. I decided to write to the head of haematology at my nearest large hospital and was surprised and delighted to receive a phone call from one their team a couple of weeks later.
He explained that they had already provided HSCT for a few MS patients who had been referred by the neurology team at the hospital where I see my neurologist! He told me that if my neurologist would refer me, they have a panel of haematologists and other experts, who would then decide whether I am likely to benefit from HSCT.
I don’t have another appointment until November, so have written a long and impassioned letter to my neurologist , asking for a referral and explaining why I think HSCT is right for me – I haven’t heard anything back from him yet.
Anyone reading this is likely to think this is beginning to sound quite hopeful. I’m trying to have faith that this will work out for me, but unfortunately I am aware that the neurology team I see are generally not very pro-HSCT. In fact this seems to be the view of many neurologist up and down the country and in other countries too. I’m still trying to fathom out the reasons behind this.
The drug companies make huge amounts of money from MS patients. DMT treatments cost £8 – 20,000 per year per patient. It is not in the interests of the drug companies for large numbers of MS patients to halt their disease with HSCT and no longer require these drugs. There is a relationship, which I don’t quite understand, between the drug companies and the medical profession, with each supporting the other and perpetuating the status quo. In addition, many MS patient advice charities receive funding from the same drug companies. The result of all this, is a culture of belief that drugs are the answer – most research is on more drugs, new drugs, better drugs, rather than looking at other means of tackling the disease.
Another possible issue is that HSCT, as a treatment for MS, was discovered by haematologists rather than neurologists. In fact, the positive impact of HSCT on MS was discovered by accident, when an MS patient had the the treatment for cancer and found that his MS was also put in remission.
Either way, this is the battle MS patients seeking HSCT currently face. If HSCT for MS was widely available, there are potentially massive savings for the NHS and for society. HSCT costs the NHS £30,000 per patient – the cost of just 3 years of the DMT I am about to start. Imagine this many times over and you can see the huge savings that could be made. This is before taking into account the additional medication that many MSers need and other costs such as physiotherapy, mobility aids and benefits when people are unable to work.
Some patients have been able to access HSCT privately in the UK at a cost of around £80,000, with many more now choosing to travel abroad for treatment costing £40-£60,000.
So this is the dilemma in which I now find myself! It could take months for me to reach a conclusion with my neurologist and the final answer is most likely to be no. Do I hang on for this before considering other options? This is a tough one. One thing MS patients don’t have is time. The disease is progressive and I have already had my worst decline since onset, over the last 12 months. If things continue at the same rate, I dread to think how I will be in another 12 months. HSCT halts progression of the disease, so it is important to have it as early as possible, before more permanent damage is caused to the central nervous system …”time is brain” as they say in the HSCT world! I have spoken online to many people who have had HSCT and no one ever regrets having it, the only regret expressed is not having it sooner.
I don’t have the funds to immediately set off and have HSCT abroad, but I have had lots of discussions with various people about whether we could raise this amount of money. Indeed, many MSers from the U.K. have already done so.
I am touched and delighted that my wonderful family and friends are totally behind me and willing to do what they can to help. I first talked about this with my children a couple of months ago and their reaction was immediately one of support and optimism …they are already coming up with some amazing fundraising ideas!
So, we will soon be launching my fundraising campaign and trying to raise the money for my treatment abroad. In the unlikely event I later find my neurologist will support my treatment locally, I will give all funds raised to AIMS, a new charity formed by MS HSCT patients to support others seeking treatment.
If anyone has any fundraising ideas, advice or experience, please get in touch.
Thanks once again for all your support.
I’m trying very hard to stay upbeat, positive and optimistic through my diagnosis and search for the best treatment, but it hasn’t always been that way and to be honest, there’s the odd time when I still can’t manage it.
When I was first diagnosed (June 2017) I was in denial, kind of pretending it wasn’t happening, not really telling anyone and hiding my symptoms wherever possible. It took me a whole year to get my head around it, to accept it and to decide the best idea is to learn as much as I can and do whatever I can to fight back.
I have spent many years of my adult life as a single parent, putting all my energies into raising my children, giving them the best that I could. I gave up my teaching job for a few years when I realised working 60 hours a week wasn’t compatible with lone parenting. I prioritised my children, kept men at arms length and generally put other aspects of my life on hold. Don’t get me wrong – these were happy times and I didn’t feel I was making a huge sacrifice. I knew that this was just a stage in life and that before long my children would be grown up and independent and I’d have plenty of time to do things for myself. I thought maybe I’d travel, join a dating site, rent out my house and work abroad, do a photography course, get fit …
Unfortunately 7 years of strange symptoms and worrying MRIs have cramped my style a little! It’s hard to plan ahead and impossible to commit to anything too challenging when you’re not sure whether your body will be functioning properly.
In August 2016, I was having a really well phase and went on my first ever singles holiday. I had an amazing time. Unfortunately, shortly after my return home, I began my third and most severe MS relapse and haven’t had a symptom free day since then.
One of my biggest disappointments is a few years ago having to defer, then withdraw, from a Psychology of Education Masters course I had been offered a place on, when my health problems got in the way. I hope I get another chance some day.
Sometimes I am all too aware that I’m neglecting friends as my time, emotions and energy are limited and need to be rationed!
So, in many ways, my world has become smaller over recent years, rather than the expansion I was hoping for.
As mentioned in a previous post, I have spent the last few months researching HSCT (stem cell transplant) to find out more about what is involved and to see whether it might be a good option for me …I have come to the conclusion that it is!
I have also been finding out more about other treatments for MS, so that I can make a reasonable comparison. There are several treatments (Disease Modifying Therapies, DMTs) available – non of them cure MS – they have varying degrees of effectiveness in reducing the number and severity of relapses and for some have no impact at all. All DMTs bring potential side effects and short and long term health risks.
Side effects include stomach upset, flu like symptoms, injection site issues, low mood and suicidal thoughts (as if having MS isn’t enough!). Side effects are common and patients often have to try several different drugs before finding the one that suits them best.
The mechanism by which most of these treatments work is unknown, however, all work to reduce the effectiveness of the immune system. This means that patients are at risk of repeated infections (stomach bugs, coughs and colds, fungal infections, urinary tract infections, cold sores etc etc). There is also an increased cancer risk and little is known about long term use, as the drugs are fairly new. In March 2018, one DMT was withdrawn after a serious risk to life was identified – it had been introduced just 2 years previously. One of the most powerful DMTs is known in some circles as “Liquid HIV” because of its devastating effect on the immune system.
So, how does HSCT compare.
Well, it’s true to say that HSCT is an invasive and challenging treatment. Chemotherapy is no walk in the park and there is a period of time when the immune system is so low, that there is serious risk, even from minor infections. Recovery from HSCT can be slow and difficult and patients must be prepared to work hard to regain fitness.
But, once fully recovered, there is no need for further treatment, no compromised immune system and, for many, no MS! HSCT is effective in halting the disease in 70-90% of patients …no DMT comes near this.
HSCT is not widely available on the NHS (yet) but there is hope amongst patients that change is coming. A major international trial has been taking place over recent years, including patients treated in Sheffield (referred to in the BBC link in an earlier post). HSCT for MS is currently available in two London hospitals and there are whispers that other hospitals are beginning to treat a small number of patients. The MS Society, MS Trust and other patient support groups are beginning to provide information on HSCT and the tide is slowly turning.
MS-UK has a useful write up about HSCT here.
UK hospitals are already very experienced in providing HSCT as it is almost the same treatment as used for leukaemia and other blood cancers. Haematology departments are able to use a percentage of their budgets to treat non cancer patients and this is how some MS patients are able to access it.
Now I’m working on finding out how I can access it too.
Today I went to my first ever MS yoga class …well, to be truthful, it was my first ever yoga class full stop!
What a lovely bunch of friendly people I met. The instructor adapted the stretches and positions for “floor people” and “chair people” so every one could join in, and we all stayed for a picnic lunch afterwards.
A very enjoyable morning and I also learnt some moves I can try at home. Hopefully I can get to another class in the not too distant future. I also plan to try MS Pilates (who knew there was such a thing?!)
A couple of months ago, I was watching the news when this report on Hematopoietic Stem Cell Transplant (HSCT) for multiple Sclerosis appeared…
Stem cell transplant “game changer” for MS patients (Fergus Walsh, BBC 18 March 2018)
I’d seen “stem cell therapy” and “stem cell transplant” mentioned on various MS websites and support group pages, but thought it was a long way from being available on a scale that might be helpful to me. There are also a whole host of scam, money making clinics around the world, offering various stem cell treatments for a range of ailments, with no evidence of success.
I decided to research further.
I have spent the last few months reading as much as I can about HSCT, speaking to others who have had the treatment and asking lots of questions. I am so lucky this has happened to me at the time of social media and internet access – so much information at our finger tips.
HSCT works by tackling the faulty immune system – the root cause of MS – rather than treating symptoms. By “wiping out” the immune system and rebuilding a new one without the memory of MS, 70-90% of patients experience a halt in disease progression, with many also experiencing an improvement in their symptoms. These outcomes far exceed any current drug treatment for MS.
There is much more I could write about HSCT, but the main thing I want to say for now is that I have come to the conclusion that HSCT is, by far, the safest and most successful treatment for MS currently available.
My next step is to find out how I can access it …
It took me perhaps a little longer than it ought to, to get myself a walking stick.
My balance has gradually deteriorated over the last few months …at first I didn’t really notice, then I was in denial, then focussed my efforts on hiding it …this was all pretty exhausting. Some days, just staying upright or walking in a straight line takes so much effort and concentration that I have little energy for anything else!
So I bought myself a walking stick.
It took a bit of getting used to at first, but using it has increased my confidence and taken a little bit of stress out of daily life. Of course, until I have my walking stick lesson, who knows if I’m actually doing it right?!
Although I accept that my mountaineering days are over, I very occasionally like a slightly more challenging walk and for this, I have recently bought some trecking poles. Yesterday I had the opportunity to road test them for the first time. When I say “road” test, I actually mean “wobbly path, uneven ground, random slopes, tree roots and torrential rain” test …the trecking poles were great! Usually I’d need help walking on this kind of terrain but yesterday I managed the whole walk on my own (well, almost!). Thank you Connor, Sophie and Odin ?
So, what have I learnt from all this? …it is better to make adaptations that will help me get on with my life, rather than resisting these options and doing less.
I saw my MS Nurse recently and she offered to refer me to a service who will come and assess my needs at home, with a view to providing handrails where needed. A few months ago I would have totally rejected this idea but now realise this is a good thing. I had a bit of a fall down my stairs a few days ago and still have the bruises …improved handrails definitely needed!
My blog has been up and running for just a week and has had over 400 hits! Thank you everyone who has had a look, made a comment, sent me a message or chatted to me in person about this …your support means so much.
I have already found it helpful in terms of organising my thoughts and thinking about what is important, while I’m on this journey.
I have also found that I really like writing …I think everyone should write! In the past, writers were authors and journalists who had been employed or commissioned to write …now we can all do it!
If you have any questions or feedback about anything on these pages, please leave a comment – I don’t claim to know anything (or much at all) about MS or indeed, about blogging and I’m always open to suggestions and ideas from others.
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Next on the horizon for me is starting Rebif (disease modifying therapy), having my home assessed to see if I need any extras, having a lesson on how to walk with a walking stick (really!) and exploring stem cell treatments for MS …busy, busy, busy!