HSCT stands for hematopoietic stem cell transplantation. It was first used to treat cancer, but is now used as a therapy for autoimmune diseases such as multiple sclerosis (MS).
The aim of HSCT treatment in MS is to ‘reset’ the immune system to stop it attacking the body.
You may have seen it in the news because some high profile celebrities with MS have had the treatment, including Hollywood actress Selma Blair.
What happens in HSCT treatment?
First, chemotherapy is given to the patient via an infusion in the vein to stimulate the production of stem cells in the body. This usually takes up to 10 days. The extra stem cells are then harvested from the blood and stored.
The patient then spends some time in hospital while they are given powerful chemotherapy which kills off much of their immune system. The stored stem cells are then reintroduced to the patient’s body. At this point, due to having a much weakened immune system, they are at very high risk of infection and cannot leave the hospital, are kept in isolation, and are often given antibiotics.
The hospital stay can last for a long time while the immune system is rebuilding itself – anywhere from between 10 to 160 days. Within three to six months, the immune system should gradually rebuild itself.
Who is eligible?
You can get HSCT on the NHS, but only if you meet very specific criteria.
Generally, current evidence says that the treatment works best for those who are under 45 and have relapsing MS, have had it less than 10 years, and have an Expanded Disability Status Scale of 5.5 or less.
There must be signs that the condition is active, meaning there must have been two relapses within the last 12 months, despite the person having taken disease-modifying treatment.
If you are looking for more information or support surrounding HSCT, there are plenty of Facebook communities that may be able to help...
Alternatively, you can call the MS-UK Helpline free on 0800 783 0518.
MS Clinical Nurse Practitioner Miranda Olding reveals the different treatment options for this common MS symptom
Spasticity, otherwise known as a tightening or stiffness of the muscle, is due to increased muscle tone and exaggerated response to muscle stretch. It is a common multiple sclerosis (MS) symptom and can affect the way we function, such as walking and posture. In addition, it can increase fatigue and cause pain. Unmanaged, it can lead to permanently shortened muscles called contractures and can affect daily living.
Spasticity also refers to involuntary muscle contractions or sudden movements, which range from a mild feeling of tightness, to severe, painful spasms, often of the legs. Here we focus on the problem of constant stiffness.
Treatment of spasticity is ideally done with the person with MS at the centre of a multidisciplinary team, with neuro physiotherapist, occupational therapist (OT), MS nurse, any relevant consultant, and possibly wheelchair services all liaising with each other.
The first thing to be aware of is that anything that is bothering the body can trigger or exacerbate spasticity in MS, so before medication, these 'trigger factors' need to be dealt with. They include, but are not limited to, infection, constipation, urinary retention, sore skin or pressure areas, anything that pinches, rubs or chafes, increased emotional stress and pain.
Muscle relaxant medication
The key with all muscle relaxants is to start low and go slow. You can even cut tablets in half with a tablet cutter from a pharmacy and start with a smaller dose. The idea is that by gradually increasing it every few days, you find a dose which reduces the problem, without causing too many side effects. The first people usually try is baclofen, and the most common side effects are drowsiness, or feeling weak. Because MS involves both stiffness and weakness in the muscles, you can find that a degree of stiffness is needed to maintain the strength needed for standing, so it can be a fine balance.
NICE guidelines recommend gabapentin as the next treatment to try if baclofen is not right for you. This is often used for nerve pain in MS, but also has a muscle relaxant effect. However, some people find the sedating side effects, or the fact that they are putting on weight, too difficult.
Another muscle relaxant that can be tried, which is less sedating, is tizanidine. But you will need a blood test before and for the first three months of treatment to check that your liver is coping and is not being harmed.
Occasionally, an older muscle relaxant, dantrolene, is tried. Diazepam (valium) is also effective as a short term muscle relaxant, but it is easy to become dependent on this. Clonazepam can also be tried.
When just a couple of defined muscles are causing the problems, botulinum toxin (botox) can be very effective when injected to paralyze these muscles. This needs to be repeated around every three months.
There has been evidence for some time that components of the cannabis plant can help some people with MS spasticity and pain. Sativex, the cannabis-derived medicine, is licensed to treat spasticity in people with MS, and is now available on NHS prescription from a specialist doctor, so speak to your neurologist or MS nurse to find out more. It is still illegal to possess this drug if you do not have a prescription.
CBD oil is a cannabis-based product that contains none of the psychoactive component, TCH, and so is legal for anyone to use. In studies where there was evidence of effectiveness, doses ranged from 0.8 to 1.8mg, taken between 2-4 times per day. The easiest way to control the dose is to take it in liquid form, and start with one drop under the tongue, then increase as necessary.
If other medications aren’t proving effective, a referral can be made to be seen in a specialist spasticity clinic, where a baclofen pump can be considered. This involves a tiny dose of baclofen being delivered straight to the spinal column via a small plastic tube, fitted to a pump, about the size of a shoe polish tin, which is inserted just under the skin in the abdomen. As the dose is so small, people have a lot less side effects than with tablets.
The way that you sit and lie in bed is important to break up the pattern of tight muscles with MS spasticity. However, this is something a physio or occupational therapists (OTs) can help with. OTs can also assist with night time splints to stretch out hands that have become very tight and to help ensure that all seating and equipment is supportive.
Keeping a full range of motion is important. Start by seeing a neuro-physio, and then keep things going with exercise. Everybody should be able to do some exercise or stretching, whether this is attending a regular exercise or yoga class, using regular or assisted gym equipment, including from a wheelchair, or even just passive stretching with a helper. A resource for this, 'Stretching with a helper' can be downloaded here https://bit.ly/2rrqHFu
Exercise not only helps to stretch out tight muscles, but also to reduce spasticity and spasm, boost fitness and lift mood.
It’s National Stress Awareness Day, but we all know it’s important to take stock of your mental health not just today, but every day.
Stress affects us all at some point and avoiding it completely can be nearly impossible. But taking steps to reduce it and manage your response to it, can be extremely beneficial. Research has shown that it can even help prevent new disease activity in people with multiple sclerosis (MS).
So if you’re craving a little more relaxation, read on.
Research has shown that meditation and yoga can reduce stress and cause changes in the brain that allow more stress resilience. Meditation slows the heartbeat and calms the mind, leaving you in a relaxed state. You can find free guided meditations online. Try www.freemindfulness.org/download
The role of exercise in helping reduce stress is well proven. One study found that exercise can not only help you manage it in the present, but it can also act as a buffer to protect you from future effects, too.
Personal trainer Dom Thorpe specialises in exercise for people with MS and offers an ‘MS Warrior’ programme online. Visit www.dt-training.co.uk/ms-warrior-programme/
Pile your plate high with prebiotics, because there is evidence that these feed the good bacteria in your gut, and improve the physiological impact of stress. Prebiotics are fibres found in foods such as chicory, Jerusalem artichokes, raw garlic, leeks and onions. When this fibre is digested by beneficial gut bacteria, the microbes release byproducts which researchers think influence brain function.
Prebiotics were also found to increase the amount of rapid-eye-movement (REM) sleep that happens. REM sleep is believed to be critical for promoting recovery from stress, with research showing that those who get more REM sleep after a traumatic event are less likely to experience post-traumatic stress disorder.
Finally, when you’re in need of a snack, you could do a lot worse than to reach for a handful of walnuts. A study found these tasty nuts and their oil may help prepare the body to deal with stress. Other studies have shown omega 3 fatty acids, such as the ones found in walnuts, can reduce bad cholesterol and inflammation markers in the body.
For more information about living with multiple sclerosis, subscribe to New Pathways magazine, your MS magazine of choice.
As part of our series of blogs today for World Mental Health day, Adam tells us about his first counselling session with MS-UK and how he felt supported to open up to someone who was completely removed from his experiences of living with multiple sclerosis…
‘I was first diagnosed with multiple sclerosis (MS) in March 2018 after one episode of symptoms. After I was told the news I was initially in a state of shock and just remember my wife bursting onto tears. I didn’t want to see or speak to anybody and I just couldn’t believe what was happening.
‘I have four children and all I could think of was them. I had a million questions in my head. How would I look after them? Would they end up looking after me?
‘The biggest feelings were ones of guilt and helplessness. I felt like the diagnosis meant my life was pretty much over and I would be a burden to those I am closest to. The feelings of helplessness were due to the lack of information and the unpredictability of the disease. Everything is a ‘maybe’ as each person is different so it’s a difficult diagnosis to understand and explain to others.
‘I found the information booklets produced by MS-UK and the MS Trust a great way of not only explaining the condition to friends and family but also for me to understand the condition and that the things I was feeling were normal.
‘I saw a tweet from MS-UK which mentioned the counselling service and I thought to myself that it couldn’t hurt to try. The idea of counselling did have an appeal.
‘I feel lucky as I have a great support network but it’s hard sometimes when you do want to talk about MS but don’t want the guilt of burdening someone close to you. I did have reservations, mainly because it was a new experience and that unnatural feeling that comes from sharing things with a stranger. Fear of being judged came into it as well, although I quickly realised this was not something to worry about.
‘The first session left me feeling so positive. It was just so nice to have someone really listening. Someone who is independent, who doesn’t know me but just wants to support and help.
‘When we went through the initial checklist of things I may be struggling with, I did have a realisation that some of them were affecting me more than I thought. You do wonder how talking through things will actually help and this is perhaps the biggest reservation, but after just one session I absolutely understood how I could benefit from the service.
‘Counselling has helped me really think about my needs and gave me the opportunity to be reflective in my thoughts about how I interact with people, what I enjoy doing and how to feel positive about the future.
‘This service also helped me feel empowered to talk through some of the anxieties I was feeling living with MS. It really did feel like a journey and I do think about decisions and choices in a different and more positive manner.
‘I have definitely got better at recognising the things I’m proud of now, no matter how small. Using the MS-UK counselling service has made me realise that sometimes the simplest achievements can be proud moments to celebrate.’
About MS-UK Counselling
MS-UK Counselling is confidential and open to anyone living with multiple sclerosis. MS-UK counsellors are registered or accredited with the British Association for Counselling and Psychotherapy (BACP) with knowledge of MS and its impact on mental wellbeing. MS-UK is a BACP organisational member and our number is 275169.
Register online today or call us on 01206 226500 to find out more.
Cathy Howard updates us on the next stage of the statins trial
I was up early again, which was just as well because parking was an absolute nightmare at the station! When we got to UCL Queens Square Institute of Neurology my appointment hadn’t been logged on their computer, so John and I had to wait for about an hour and a half to allow for my records to be released and my prescription to be authorised and filled at the pharmacy. We consoled ourselves with lunch and coffee at a local Italian restaurant.
Once the appointment resumed the lovely nurse Sarah looked after me again. She took the remainder of my original prescribed statin/placebo and replaced it with 2 new bottles and a six-month diary. She took blood and my blood pressure, and Dr Tom Williams noted some headaches and nausea I’d experienced during the first month. He also checked my lungs and heart. As long as these blood tests are ok, I can start to take two tablets per day increasing from one. I was able to collect a CD-Rom with my MRI scan on. So excited as it’s been a long time since I last had one done.
As long as my GP is happy, I can have my next lot of blood tests, at the end of November or the start of December at my local surgery. A few days afterwards I’ll get a phone call at home from one of the research team to ask me a few questions. I’ll let you know how it all goes.
MSer Cathy Howard updates us on the next stage of the statins trial
I was up with the lark again and even earlier than my last appointment! I got to UCL Queens Square Institute of Neurology almost an hour early, but I’d much rather be early than late.
A lovely nurse called Sarah took us through to the same area we were in last time and got me my second coffee of the day. She also gave me a Baseline worksheet with questions about how my MS currently affects me physically and mentally.
Dr Nevin John explained the day’s process, went through reams of paperwork with me and I signed five more informed consent forms for sub-studies. Don’t think of the trees!
Then the tests began. The Dr who administered those was very thorough and put me through a battery of sight, memory and manual dexterity tests, as well as a comprehensive neurological test. Records were taken after each part of each test.
I completed another walking test with a mobile phone with the MSteps app attached to my arm.
I had six lots of blood taken by another lovely nurse and a cannula inserted for contrast dye to be given part way through the lengthy MRI scan. I have some anxiety issues with MRIs so my GP kindly prescribed me diazepam as a sedative.
The last part of my day was 45 minutes of MRI scans. I estimate I had about 15 separate scans of varying durations. I was asked if I’d like some music whilst in the scanner, and I thought – well, I was an 80s teenager, so Madonna would be perfect. Although I couldn’t hear a lot of it whilst the bangs, clicks and dings were going on, when there were quieter periods, I was Vogueing (in my head) and being a strutting Material Girl! The technician who completed the scans will let me have a copy of the scan at my next appointment. Yay! It means I’ll be able to discuss it with my neurologist Dr Giles Elrington next time I see him. I haven’t had an MRI since my diagnosis, so I’m quite excited about that.
I was given my statin/placebo with a diary to keep updated. One tablet a night for a month. My next appointment is on 24 September. Bring it on!
Healthcare services have been failing people with neurological conditions like multiple sclerosis (MS) for far too long. That’s a fact. The number of people living with neurological conditions in England is rising and will continue to increase. But, for a number of years now, neurology has not been a national priority for the NHS. Research shows that those living with progressive neurological conditions are experiencing delays in diagnosis and treatment, fragmented and uncoordinated services, limited availability of neuro-specialist rehab and reablement and a lack of psycho–social support.
This inequality is simply not fair.
The NHS RightCare Toolkit for Progressive Neurological Conditions has been developed to help change that and ensure people living with brain and nerve conditions like MS, Parkinson’s and Motor Neurone Disease (MND) get the care and support they need and deserve.
Seven charities (MS Trust, MS Society, Parkinson’s UK, MND Association, Sue Ryder, MSA Trust and PSP Association) joined forces with NHS experts to produce the toolkit. The hope is that Clinical Commissioning Groups (CCGs) will take full advantage of this unique opportunity; that they will use the practical, clear and innovative guidance the toolkit provides to tackle some of the big challenges people with these conditions face and ultimately improve healthcare services for this group, now and in the future.
If implemented in the right way, the numbers speak for themselves: up to 2,500 emergency admissions to hospital a year could be avoided for patients with these conditions as a result, with up to £10 million freed up to fund improved services.
So what does this mean for people with MS? The toolkit outlines four priorities that need addressing in MS care: improving the efficiency of disease modifying drug management, better use of data and technology to free up the valuable time of MS specialists, holistic support for people with advanced MS, and more MS specialists from different areas working together to provide joined-up care.
MS health professionals do an incredible job with the resources at their disposal and we know that many services are already delivering high quality care - the toolkit has real-life examples of best practice from across the country. But we want to help all areas reach the same high standard and make this best practice a reality for all. We will work closely with the other charities involved to support efforts to see the toolkit implemented effectively, with the shared aim of improving care for everyone living with a progressive neurological condition in England.
This blog has kindly been written by the MS Trust. To find out more about them visit the MS Trust website or if you’re living with MS and would like to share your experiences of healthcare, please get in touch with the MS Trust at firstname.lastname@example.org.
Hi, I’m Cathy Howard, I’m 51 and have secondary progressive multiple sclerosis (MS). I was originally diagnosed with relapsing remitting MS in 1998 at the age of 30 and I later took ill-health retirement from work in early 2015.
I use two sticks to walk short distances, or a wheelchair or scooter if I’m going out. I applied for the Simvastatin trial as I was conscious that apart from some fundraising for MS Society and MS-UK over the years, I’ve never really done a great deal for others with multiple sclerosis (MS).
The MS-STAT2 trial is a double-blind study, which means that I don’t know whether I’ll be taking Simvastatin or a placebo, and neither do the Drs who administer and regulate it. To be honest, although it would be a bonus to me if I took the drug and it worked, I’ll be happy just participating. I will be sharing my experience of participating in the trial through regular blog posts on the MS-UK blog, so watch this space!
Today is my screening day appointment (19 August 2019). I got up ridiculously early because my husband John was stressed about us getting the train with booked assistance for me in my wheelchair. Bleary-eyed we head out to the station. I was eager for my first coffee of the day.
The train was on time and we got to UCL Queen Square Institute of Neurology in London about 45 minutes early. Dr Tom Williams, MS Clinical Research Fellow, came to meet us and escorted us through the rabbit warren of corridors to the trial room. Here I had my second cup of coffee and I’m started to feel awake.
Tom introduced Dr Nevin John, MS Medical Clinical Research Fellow, who is also part of the study. Nevin advised me about the trial, what to expect and possible side effects of statins. He asked me questions, completed forms based on my replies, and requested for me initial consent forms. There is so much paperwork and record-keeping involved!
I then had a basic physical examination, including blood pressure and blood oxygen levels, and my heart and breathing listened too. My height and weight were checked and I had various vials of blood taken for testing.
I also agreed to take part in a brain oxygen study and mSteps smartphone analysis. I was wired up to the brain oxygen study machine and computer and baseline readings were taken. Then I had three separate minutes to say as many words as I can that start with a selected letter. Not as easy as you may think! From the problems I had, I expect I’ve got very little oxygen reaching my brain!
An app is being developed to accurately record walking distance and speed etc. I had a mobile phone with the app on it strapped to my arm and was asked to walk short distances. This also served for the walking part of the MS-STAT2 screening process.
All in all, it was a very interesting appointment. I was completely exhausted by the time I got home but felt like I’d actually done something productive and I’m smiling as I write this! This is it for now, but I’ll update you all on the next part of my journey very soon!
Inflammation is essential to our survival. It’s our first line of defence against the outside world. It attracts cells of the immune system to the site of danger to destroy pathogens and helps heal injury. As a short-lived response it performs excellently as protector and healer.
In multiple sclerosis (MS) inflammation is ongoing (chronic), with the myelin covering being attached by neurons wrongly identified as pathogens. The immune system attacks pathogens with oxidation. The oxidative damage causes further inflammation.
An unhealthy gut microbiome can be a source of inflammation. Boston researchers found MSer’s microbiome linked to ongoing inflammation. Luckily the microbiome is easily changed with food choices that nourish the microbiome.
Foods described below can have anti-inflammatory effects, either directly helping to resolve inflammation/oxidative stress, or indirectly by feeding our microbiome so anti-inflammatory microbes crowd out pro-inflammatory ones.
Champion foods (both direct and indirect effect)
Particularly rich dark, leafy greens contain polyphenols and antioxidants, which can directly reduce inflammation. Vegetable’s high fibre content feeds the microbiome. A small Italian trial found a high vegetable diet reduced inflammation, improved gut microbiome and helping to improve overall health.
Especially deeply coloured berries, which are potent antioxidants that can reduce inflammation. They also provide food for the microbiome, helping to keep your gut healthy. Try and make sure you are getting your 5-a-day, and aim for 10 if you can, after the NHS recently reported that 10 portions of fruit and vegetables is even better for us.
3. Oily fish
Mackerel, salmon and sardines are all sources of essential fatty acids (EFAs) omega-3s, which UK researcher found increased anti-inflammatory bacteria in the microbiome and may help directly resolve inflammation.
These are a source of required omega-6 EFA, which can be inflammatory in excess. Walnuts have a balance of omega-6 and omega-3, and research has shown they promote anti-inflammatory microbes. Research found that walnut oil reduced inflammation in a mouse model of MS.
Another great source of EFAs. Some seeds, such as flax and chia seeds have a high anti-inflammatory omega-3 content.
6. Extra-virgin olive oil
Extra-virgin olive oil is a source of antioxidant vitamin E and anti-inflammatory polyphenols. A review of multiple trials indicated that this oil could improve inflammatory disease symptoms.
Ginger has well known anti-inflammatory properties. An Iranian researcher indicated it may reduce inflammation in mice with experimental autoimmune encephalomyelitis (EAE).
It’s been in the news a lot recently and is now well known for its anti-inflammatory properties, but it has poor absorption. Consume it with healthy fats and black pepper to improve the absorption.
Indirect effect via the microbiota
9. Legumes and wholegrains
Another good source of fibre which has been found to benefit gut microbiota.
Out of the above list seven constitute the Mediterranean diet. Interestingly, the Mediterranean diet is very similar to the high vegetable diet used in the Italian study mentioned in point one. It showed an anti-inflammatory effect in MSers and reduced disability. The anti-inflammatory Mediterranean diet is being looked at by a variety of experts and particularly for people with MS.
Sharon was diagnosed with multiple sclerosis in 2007 and prompted a career change to nutrition with the goal of empowering people to take positive steps toward feeling better. Sharon aims to share her nutritional knowledge, the latest nutritional and lifestyle research and expertise from healthcare professionals. Visit Sharon’s website for more information about her and her latest articles.
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Mindfulness is a bit of a buzzword and that is for good reason. With practice, mindfulness can change the way our brains work and instill a sense of calm. Far from its roots in traditional Buddhist practice, mindfulness of today is about taking your focus out from the past which we can’t change and the future which is yet to happen and putting it firmly in the present. This can be done in a number of ways from focusing on the body to the external senses.
Forgive others and ourselves
Holding on to grudges and past hurts has been likened to ‘putting your hand into a fire but expecting it to burn the other person’. It might feel like the right thing to do, but what does it really accomplish? Forgiveness is surprisingly seldom about the other person but about the feelings and beliefs that we carry with us from the precipitating event. Forgiveness is a private decision and it is not necessary to tell the other person that we have forgiven them. Of course, forgiveness of the self is just as important, as feelings of shame can be overwhelming, we are human after all and everyone makes mistakes.
Use positive affirmations
It’s easy to fall into a rut of negative talk, but by changing the wording it can have a transformative effect on how we feel about ourselves. Remember that coach from school or any other supportive and encouraging role model you have had the joy of spending time with? Be your own cheerleader – ‘you can do it, you are worthy and you are loveable’.
Set small goals and complete them
By setting ourselves small achievable goals throughout the week we can begin to see that we can do the things we set our minds to. Whether it is finishing that book, learning to crochet, phoning an old friend or putting time aside for self-care, it shows ourselves and others that we care for and value ourselves.
Keep a gratefulness journal
Log three things you are grateful for every other day, they don’t have to be big things. A smile from the lady in the newsagents, a bird on the windowsill or simply an hour of your favourite TV show. By feeling and acknowledging the small moments in our life that we often take for granted, we can start to build a more accurate model of what our life is really like rather than focusing on the negative parts.