MS Trust – Another MS Warrior

129 What’s happening with my MS?

Hello dear readers, I’m sorry for neglecting you of late. Today is my 66th day in lockdown and as everything is on hold, there really isn’t much to report!

I’ve had lots of messages and questions from family and friends about how my MS is affecting me at the moment and my plans for treatment, so I thought I’d write a bit of an update.

Over the last few weeks, I have had telephone appointments with my GP, an occupational therapist, a physiotherapist, my neurologist in Salford and with the neurology team in Sheffield. My long awaited appointment with the MS Nurse has been delayed as she has been redeployed due to the pandemic.

The situation with Professor Sharrack in Sheffield is that he believe that I have Secondary Progressive MS with superimposed relapses. This would exclude me from their criteria for HSCT treatment there. They would like me to have a further MRI scan, which they will compare with the previous one, before making a final decision. At the moment, the hospital is not carrying out routine scans, so this is likely to be on hold for several weeks/months/who knows?!

My own neurologist is very concerned about the length of time I have been without treatment and would like me to try another DMT (Disease Modifying Therapy). He understands why I am pursuing HSCT but feels that it won’t be safe to travel for treatment for quite some time (a year or more was mentioned) and would like me to be protected from further relapses during this time. So I have agreed to try Tecfidera. This is taken in tablet form and reduces both the frequency and severity of relapses. My neurologist thinks I am having lots of mini relapses, so hopefully this drug will reduce them.

You can read more about Tecfidera here … MS Trust – Tecfidera

Regular blood tests are required when taking Tecfidera, including an initial test to check liver and kidney function, full blood count and diabetes status. So, last week I went to Salford Royal Hospital for the test. It was a very strange experience, having not left my local area for weeks and only occasionally driving around the block.

The hospital was eerily quiet and no one seemed to be wearing a mask, except me! I was asked some COVID questions and had my temperature taken on arrival (by a man not wearing a mask) and several vials of blood were quickly taken (by a nurse who was wearing a mask).

I have also been prescribed a drug that may help with my debilitating fatigue and brain fog and started it this week. It takes a few weeks to begin to take effect, so fingers crossed it works for me ??The drug is called Amantadine and is an antiviral which has been found to help 1 or 2 people in 5 with MS fatigue, although the mechanism for this is not known. It is sometimes used to treat people with Parkinson’s Disease as well.

you can read more about Amantadine here … MS Trust – Amantadine

I am still off work and my GP would like me to stay off until both new drugs have had a chance to kick in. I have very mixed views on this … some days I feel that I could manage work (at home of course) and on other days it feels like an impossibility. Being at home has given me lots of time to think and come to the realisation that I need to make some changes in the long term (whether I eventually have HSCT or not) …I have no idea yet, what those changes might be.

I have been continuing on my daily walk most days and some days this has been quite a struggle, as my left leg tends to drag and can often feel like a heavy, dead weight by the time I’ve walked a few hundred yards. A couple of weeks ago, I developed a severe muscular pain in the right side of my lower back. I spoke to my Occupational Therapist about this and after much discussion, she worked out what was causing this problem. Most of the time, I wear flat ankle boots when out and about, as I find these comfortable and benefit from the ankle support, especially on my left foot. When the warmer weather arrived, I started wearing flat lace up pumps and was aware that my left foot was dragging and would sometimes catch on the ground. The OT worked out that I was leaning slightly to the right in order to accommodate my dropping left foot and that this was the source of my back pain … how amazing is she?! So I have now been provided with a device to help lift my left foot, which should reduce tripping risk and take the pressure off my back.

It’s ugly and a little uncomfortable, but I’m going to persevere with it. If it keeps me mobile, who knows, I may grow to love it!

A combination of Tiger Balm, hot water bottle and gentle movement has healed my back pain, so I’m back on my feet again.

I hope you are all staying as safe and well as you possibly can ?

117 MS and HSCT online roundup

I am so glad to have this illness at a time when we have access to information, opinion and support online. If my only source of information was my neurologist, my life would be a complete mess by now!

I am a big supporter of the NHS, my parents were both GPs and I’ve been on marches to protest funding cuts, but … I really don’t think the NHS has it right yet, in managing chronic illness and supporting patients with long term health problems. It is common for MSers to have a long fight to be taken seriously, to be referred to a neurologist, to be diagnosed and then to receive appropriate treatment and support.

Meanwhile, in other parts of the world, rapid diagnosis and early treatment has been shown to be the best option for patients in terms of minimising progression and disability and the most cost effective for health services.

At present, I see my neurologist for 10 rushed minutes once per year. He doesn’t even ask me about new symptoms or my opinion on anything! It’s a very deflating experience and I don’t feel at all supported (probably not his fault – what can he do in 10 minutes?). I should have had access to an MS Nurse for ongoing support and advice for the last few years, but unfortunately my neurologist forgot to refer me and I have slipped through the net (despite numerous phone calls and requests from me).

I recently had an appointment with an Occupational Therapist, which has been a really positive experience. She has given me advice, access to equipment and most of all, she has listened to how MS affects my life. She has also managed to chase up the MS nurse service and they are finally acknowledging my existence! Thank you Hannah ?

I have learnt a lot about MS through reading and researching online. The MS Trust, MS-UK, Shift MS, the MS Society (amongst others) are all excellent sources of information and guidance. Another source of knowledge is Dr Aaron Boster, who is an Ohio based MS neurologist with a Youtube channel, where he seeks to educate and empower people with MS. Dr Boster works on the premise that neurologists and other practitioners working with MSers should have the goal of helping each person to be the “most awesome version of themselves”. I love this! I want to be the most awesome version of me that I can be! Here’s a short video in which he answers viewers questions on how to manage their MS symptoms …

There are many other videos on a variety of topics linked to MS on his YouTube channel … well worth a look if you, or someone you care about, has MS.

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I have spoken before about following the journey of Scott McCormick (Gogglebox) as he underwent HSCT at Hammersmith Hospital in London. Scott is recovering well, has had no further disease progression and is now back at work and enjoying life. He is doing all he can t raise awareness of HSCT.

He has written a couple of blog posts for MS-UK to summarise his experience …

Part 1 My neurologist tried to talk me out of having HSCT

Part 2 I was told to expect the worst I could imagine, and then some

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My main source of information, advice and personal accounts of those who are seeking or have had HSCT has been through the UK Facebook support group. This is a closed group for MSers and their supporters only.

I thought I’d share the link in case any fellow MSers are interested … link

Another source of support is a new UK charity, AIMS (Autoimmune and MultipleSclerosis), which was set up a little over a year ago. A group of MSers and their partners experienced the tough journey to access HSCT and they set up AIMS as a means of helping others on that journey. They are now a flourishing charity and have started rolling out travel grants to those of us having to go abroad for treatment.

You can read more on their website here. I would recommend anyone who wants to know more about the treatment, to read their excellent summary “What is HSCT?”. AIMS also have an active social media presence and can be found on Facebook and Twitter …please follow them and share with your friends.

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On Monday it will be just 6 weeks until I set off on my journey to Moscow in an attempt to stop my MS progressing further. I’m feeling really positive about my decision and so grateful for the support of my family and friends ❤️

I’m a little tired and stressed, but this is more about the worry of getting myself and my home ready and managing all the planning and practicalities involved.

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We are still fundraising and have a long way to go before we reach the total needed to fund my treatment. A family member is kindly lending me the outstanding funds as I am worried about delaying my treatment any further. This means that I will be continuing to fundraise after my treatment so that I can repay my loan.

My journey to Russia begins on Monday 16th March and we are holding a fundraising fare well tea party on Sunday 8th March. We’re still finalising the details and will share those with you soon, but please put the date in your diary … we’d love you to come along and bring your friends and family ?

GoFundMe

96 MS and HSCT online

Well it’s a week into the school holidays and I’m finally starting to unwind a little. I have decided not to book a holiday or even a trip to the IoM and to just stay home, relax, see friends and get a few jobs done.

My garden is small and I usually manage it myself, but the recent warm weather combined with heavy rain fall, means that everything has grown madly over the last few weeks and it’s is now a bit beyond me!

I am still anxiously awaiting news from the hospital in Sheffield. I am expecting an appointment in “mid-August” but haven’t been informed of one yet. It’s very hard to plan anything at all, as I want to make sure I’m available for the appointment.

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I am one of those people who needs to learn as much as I can about things that affect me, so have been reading and researching all things Multiple Sclerosis since before I was formally diagnosed. It was through doing this that I came across a BBC news report on the MS MIST (HSCT) trial, leading to further research on whether it could be the treatment for me and how I could access it.

In case anyone else is starting this journey or for anyone who is interested, here are some of the sources of information and support I have used.

MS Society

In the UK, there are several organisations providing information and support for those with MS, their families and friends. Perhaps the most well known of these is the MS Society. The MS Society provides information via their website, has local support groups all over the country, funds research and campaigns on behalf of MSers. The MS Societies in various countries are all linked and receive some of their funding from major drug companies. The information they provide about MS is likely to be very reliable, however, there is concern amongst some MSers that that the Societies may be influenced by their pharmaceutical backers and that people with MS may not always be their first priority. Certainly, it is very evident that the MS Societies do not promote HSCT and some of the information they provide on this is both inaccurate and overly negative.

MS Trust

The MS Trust is another large UK organisation providing information and support for those impacted by MS. The information on their website is reliable and easy to understand and I have also found their telephone helpline to be useful.

MS-UK

MS UK is a slightly smaller UK organisation, with a useful website and helpline.

Shift.ms

Shift MS is a patient driven world wide organisation providing an online community of fellow MSers, where all aspects of the disease, treatments and everyday life are discussed.

All of the above have social media presence on Twitter, Facebook and elsewhere and provide news and commentary on new developments in managing MS, living with disability, entitlement to benefits etc.

When researching HSCT, it is not easy to find reliable information and patient experience. The most reliable and supportive resource for me has been the Facebook groups, which are run by HSCT patients.

There is a general world wide HSCT group … HSCT Hematopoietic Stem Cell Transplant – MS & Autoimmune Diseases (Facebook group)

And a very helpful UK group – UK HSCT for MS and Autoimmune Diseases (Facebook group) – where UK citizens can get advice and chat with others about accessing treatment here or abroad. There are further groups for the clinics in Russia and Mexico (as well as some others).

AIMS (Autoimmune and Multiple Sclerosis)

There is also a new UK charity, the world’s first that supports people with MS and other autoimmune diseases to access HSCT. The charity was set up by some HSCT patients and their partners and had its official launch last year. They are mainly operating via their Facebook and Twitter pages at the moment and have recently launched their first invitation to those pursuing HSCT to apply for financial support with travel expenses.

These have not been my only sources of information … I have also read numerous research reports and neurology opinion pieces, which have all helped me to feel confident in my decision to pursue HSCT.

A couple of my fellow HSCT UK Facebook group members have recently had their stories reported in the national media.

Colette and Lucy were both successfully treated by the team in Sheffield. You can read more about their stories here … Colette and Lucy.