I am pleased to say New Pathways issue 108 is now landing on doormats across the country! As always we have a packed issue, full of all the latest multiple sclerosis (MS) news and research, including drug updates and the latest cannabis study findings.
As the sunshine begins to make an appearance, we get topical with lots on vitamin D. MSer Ian Cook puts vitamin D tablets and sprays to the test (see page 30) and Kahn Johnson reveals what happened when his vitamin D levels became toxic on page 16.
Also in this issue, MS Nurse Miranda Olding discusses sexual dsyfunction and what can be done to help (page 14) and we have the big interview with the star of Channel 4 programme 'The Search for a Miracle Cure' Mark Lewis (page 24).
I hope you enjoy reading this issue, and please do email me your comments and letters to firstname.lastname@example.org.
Editor, New Pathways
P.S. Don't forget New Pathways is available to read on the go. Download the My MS-UK app from the App store on your phone or tablet device today!
In her latest guest blog Chloe gives us an insight into her first year of Tysabri treatment…
I can’t believe it’s been a year since I embarked on my new multiple sclerosis (MS) treatment, Tysabri.
What I started in trepidation has now become my lifeline. It has really transformed my life…but let’s start from the beginning.
As treatments go, it’s pretty non-invasive. I remember the first time well…I was nervous. I used to have a fear of having cannulas put in (after an unpleasant experience when I was younger) so to have one every month was nerve-racking. I sat down in the high backed treatment room chair, my heart fluttering. Heather, my MS nurse, had just started at the MS unit herself, so we were embarking on this journey together.
So after basic observations (temperature, blood pressure) were taken it was time for the cannula. And what a fuss I had made! I had built it up into something awful in my head, but it was absolutely fine. It was no more painful than having a blood test, and I’ve had plenty of those in the past! What a relief it was though.
Once the cannula was in, I was rigged up to my first infusion and we were away. I couldn’t feel anything going in, there was certainly no stinging or irritation, so all I had to do was sit back and relax. Heather joked that it was ‘enforced rest’ for me because, what with the children, it’s very rare that I get an hour in the day to just sit back and read a book.
The infusion took roughly an hour, and then I had to sit and wait for another hour to make sure I didn’t have any ill effects. There were no side-effects for me at all. If anything I felt quite buzzed up! It was probably from the relief!
The whole appointment took 2 hours, and then I was sent on my merry way.
The ‘buzzed up’ feeling lasted a day or two afterwards. I felt stronger and more energetic.
13 infusions down, and a whole year later and I feel like I can reflect now on any positive effect Tysabri has had.
Firstly, I haven’t had a relapse since I have started. I normally have at least one relapse a year, so already that is a very good sign and shows that something positive is going on. I don’t get the ‘buzzed up’ feeling after treatment any more (if anything I come out feeling tired), but every month is the same non-painful and simple procedure.
I can honestly say that I can do more now than before. Tysabri isn’t meant to get rid of day-to-day symptoms such as fatigue, but what it has done has pushed me into a good state of remission. My symptoms are manageable, and being able to do more exercise, I feel healthier. At the end of each month I do find myself flagging a bit, so I look forward to my appointments so I can get ‘topped up’ again.
I am so happy to have found a treatment that finally works for me. I had previously tried Rebif, Copaxone, Avonex, and Tecfidera, but none had helped reduce down my rate of relapses. I was in a bad place with my depression also at a peak, so Tysabri really felt like a light at the end of a tunnel.
But of course, there have to be down sides.
Firstly, Tysabri is only eligible for those who have two or more severe relapses in a year. I was ‘lucky’ in that after two relapses close together I was now eligible to try it, but for years I had just missed out.
Secondly, there’s a risk of developing Progressive multifocal leukoencephalopathy (PML).
Tysabri has its fair share of common side effects (tiredness, headache, muscle pain, to name a few) but a less common and extremely serious side effect can be contracting a brain infection called PML (Progressive multifocal leukoencephalopathy). This can lead to severe disability or even death. A test is done before treatment to see whether you have something called the JC virus. If you are positive, then it increases your chances of contracting PML from 1 in 10,000 to 1 in 1,000.
For the past year, I have been JC negative, so for me the positives outweigh the negative risks. However, would I continue on treatment if I turn out to be JC positive? That’s a really tricky question and one I will have to dwell on if the situation arises. I have met other people on Tysabri who are JC positive, but carry on with treatment anyway, but I’m not sure whether I would feel comfortable taking the extra risk.
That’s a topic for another day though. So far Tysabri has turned out to be a positive experience, and it’s allowed me to take on a new lease of life. I can make plans again without having to worry about cancelling them, I can take the dog for a walk independently and confidently and can play with my children without getting too tired. Long may it continue!
You can follow Chloe’s story at tantrumsandtingles.blogspot.co.uk.
Hello, We are updating our Choices leaflets about diet, Primary Progressive MS (PPMS), speech and swallowing, visual symptoms and Low Dose Naltrexone (LDN). But we need your help! If you have a diagnosis of multiple sclerosis (MS) please take our survey and share your experiences to help us shape the leaflets. We hope that by including your experiences, our leaflets will truly resonate with people who turn to us for help. Please be assured that any comments you give us will remain anonymous when published in our Choices leaflets.
Thank you for your help! Best wishes,
The MS-UK Helpline team
On Monday 13 November Nileema (our Counselling Coordinator) and myself went along to the MS Trust conference in Hinckley, Leicester!
The MS Trust is a UK charity that produce multiple sclerosis (MS) information and support MS specialist health professionals. This year they celebrated their 21st annual conference, welcoming some 300 guests to learn, share expertise and focus on improving care for people living with MS.
We went along to seminars about sharing best practice and understanding MS and mental health. At the plenary session we learnt more about high risk MS drugs and keeping safe, as well as understanding and supporting risk perception to people with MS. All of the speakers were excellent, and it was a fantastic day.
Nileema and I also spoke to people about our new service – MS-UK Counselling. This is a brand new telephone counselling service for people living with MS in the UK. You can find out more and register on our website at www.ms-uk.org/counselling.
Thank you to the MS Trust for making us feel so welcome, and thank you to all of the MS professionals who stopped by our stand and chatted with us.
Looking forward to next year’s conference!
We are refreshing our Choices leaflets for people affected by multiple sclerosis (MS) and we need your real life experience to help shape them!
We want to always provide people with the fullest range of choices available to them; not only drugs but all types of treatments and lifestyle changes. We hope that by including your experiences, our leaflets will truly resonate with people who turn to us for help.
Please be assured that any comments you give us will remain anonymous when published in our Choices leaflets.
Thank you for your help!
The MS-UK Helpline team
Not everyone has time to visit the news section on the MS-UK website every day (its ok, we forgive you), so here’s a summary of some of the latest developments in MS.
I’ve got a gut feeling
Recently there has been a lot of news regarding gut bacteria, with some interesting studies highlighting how changes to gut bacteria could lead to a possible future treatments for MS.
Reading these stories, I found myself researching the different gut bacteria thinking maybe I should change my diet accordingly, but I quickly realised it’s not that simple.
More research is needed to get to treatment stages, but the signs are encouraging.
Click the stories below to read more about the latest developments.
And with tummies in mind, the latest issue of New Pathways magazine features a four-page feature about the Overcoming MS Recovery Program, one of a few popular diet choices for people with MS. Find out more by subscribing and why not try out the free recipe too?
News for progressive MS
Scientists at Yale University have uncovered two closely related cytokines that may explain why some people develop progressive MS and could lead the way in developing a novel treatment to prevent progressive forms of the condition. Click here to read the news story.
Let’s talk genes
MS is not hereditary, but it is genetic and researchers at the University of Florida Health got everyone talking recently, when they revealed they had found a way to inhibit or reverse MS using a novel gene therapy technique that stops the condition’s immune response in mice.
Of the mice that received gene therapy, 80% went into near-complete remission after having hind-limb paralysis. This is a promising outcome, but more studies are needed.
Bexarotene, a drug that could help the brain regrow myelin in people with MS, has started its phase II clinical trial.
The trial is only open to people with relapsing MS who are currently on a disease modifying therapy (DMT). It will involve 50 people and the first person involved started their treatment in March.
Recruitment is taking place in Cambridge and Edinburgh, but not everyone will be eligible because of other important criteria.
The trial will run for four years to study the long-term benefits for people with MS.
For more information about the criteria for the trial click here. To access the trial you will need to be referred by your GP or neurologist
For more daily MS news, visit the MS-UK website.
New Pathways Editor
In her second guest blog, Joanne, tells us how her multiple sclerosis (MS) started and how it is being a Mummy with MS...
It all started with eyeliner. I was trying to put some on before going to work. I thought ‘crikey I can’t see very well, maybe I have overdone it.’ So off I trotted to the opticians, who then referred me to the hospital.
My journey began. I was told I’ve got Fuch’s disease, more prominent in people who have different colour eyes like me (I still need to be monitored for this, no, I’m not related to the late David Bowie!)
I started with daily fatigue and weakness in my arms. Googling symptoms, I convinced myself of all sorts including a brain tumour. My eyesight was getting worse. My kindle was my best friend as I could zoom in and read (like all three books of 50 Shades!) I was off work and eventually the hospital told me I had optic neuritis.
The first mention of MS started. Lots of procedures including an MRI (wear socks so you feet don’t get cold is one of my tips) and my spinal fluid was taken twice. A never ending journey of hospital appointments. I didn’t want to believe it because I hadn’t been diagnosed, which came a year and a half later so I spent a lot of time in limbo land. It was frustrating. I didn’t really have a clue about MS. I’m still learning.
As you know, there are many symptoms of MS. Mine have included daily chronic fatigue, pain, weakness ( I haven’t properly written in over two years), numbness, poor balance (falling off my bike was fun, not!) rubbish walking (I now have a stick) slurred speech (no, I’m not drunk, but probably sound it!) swallowing problems, bladder issues (what joy!) smelling of smoke (apparently this is an unusual symptom) and various other things. I was on Copaxone injections before I fell pregnant. I had a really bad reaction and ended up in hospital. I was also on Tecfidera tablets for ten months but came off recently, am waiting for a neurology appointment and debating my options.
My main thing has been trying to deal with being a mummy with MS. I found there isn’t anything that addresses how you look after yourself and a little one at the same time, so I started to write. I’ve been writing for the MS Society, other MS charities like MS Trust and Shift MS and my blog, poorlyparents.wordpress.com.
I’m no expert on mummy or MS stuff. The biggest thing I found helpful is gaining an understanding from others who are in the same boat. I’ve not met anybody like me. Maybe social media will help. Thank you for listening. Here’s to more blogs.
Tomorrow is the last chance to take our survey all about the MS-UK Helpline, and let us know your opinions if you have used the helpline at all in 2017.
We would like to know why you chose the MS-UK Helpline, whether or not you found the information and support from our team useful and your opinions about our opening hours and accessibility.
This survey is for people who have used the MS-UK Helpline this year (2017). By completing this survey, you are helping us to improve the MS-UK Helpline in the future, so your feedback is invaluable!
As a thank you for sharing your thoughts, one lucky person will be selected at random to win a £50 Love2Shop voucher!
The closing date for this survey is tomorrow (09 August 2017), so don’t delay!
Thank you – and good luck!
Diana Baxter, Head of Services
In her latest guest blog Chloe discusses the effects of sugar on multiple sclerosis and the work of Dr Terry Wahls...
I’ve had MS for 16 years now and it’s taken all of those 16 years for me to realise the obvious. Sugar is bad for me and my MS.
Okay okay…I’ve actually always known but have turned a very blind eye to it in the past. I mean sugar is delicious! I have a good diet, don’t get me wrong, but who can resist a sugary treat?! Not me.
The problem with sugar is that the effects are instantaneous with me. If I have something sugary I go tingly. End of story. Even having a yoghurt (pumped full of sugar it seems) would leave me with tingles all down the right side of my face. So the signs that sugar was no good for me were there.
It’s only been recently though that I’ve decided to do something about it. There’s been a lot of research done into the harmful effects of sugar and I couldn’t help but take notice.
There are a lot of websites in particular that talk about the effects sugar has on MS, and how one should avoid it. I found the work of Dr Terry Wahls in particular an interesting read, and was fascinated by her book, The Wahls’ Protocol. The protocol is designed to ‘restore health and vitality to those with MS’, and was created by Dr Wahls after conventional medicine had no effect on the progression of her MS. I, and Dr Wahls, are not suggesting that people with MS shun treatment and go with the diet instead, but purely that it’s an alternative for those who have had no result from treatment. Likewise, it’s a healthy and beneficial diet for all those who have chronic autoimmune conditions, whether they are on treatment or not. I’m on Tysabri which fingers crossed seems to be doing good things so far, but had been failed by 3 treatments before.
Dr Wahls found that changing to a super nutrient Paleo diet transformed her MS. She went from being wheelchair bound to riding a bike and I urge you to look at her work. Though I haven’t managed to stick strictly to the Paleo diet myself (no wheat, barley, dairy, eggs, processed food, sugar, and reduced intake of legumes and potatoes is hard to get your head around when you’re trying to man-handle a 2 year old and living in a predominantly vegetarian household!) the emphasis on sugar was what I really found interesting. To hugely summarise, Dr Wahls’ principle is that care needs to be taken to make sure our body is working as efficiently as possible at a very cellular level. Feeding our body a high-sugar and high-starch diet ‘gum up’ your mitochondria (an important part of our cells) meaning they diminish efficiency. Sugars and starches in particular affect your body detrimentally in two ways. Firstly they are high in calories and fill you up, but provide very little nutritional value. Secondly, they encourage the growth of unfavourable yeasts and bacteria in your gut which can lead to a lot of other problems*.
That evidence, coupled with the fact that I knew full well that it was detrimental to my health (with the instant tingles) it was a no-brainer that I had to cut out sugar from my diet. But my goodness me, it was hard. There is sugar in everything. It’s only when you start looking that you realise the hidden sugars that plague us. I had two weeks of complete detox from sugar (including fruit) and now I am very careful with what I eat, trying to eliminate it as much as possible and not eat more than 10g of sugar a day. I’m no angel though…obviously I still have bad days and slip. But at least I’m aware of the bad effect sugar has on my diet. If I eat some and get tingling and a headache then that’s my own fault and I have no-one else to blame.
6 weeks in and I’m amazed at the effect eating a low sugar diet has had though. Not only have the tingles gone, but I’ve had more energy and more stamina. I just feel brighter. I’ll never know whether it is no-sugar that has done this, or whether it’s coincidence and I’m just in a good remission, but I figured that any changes I can make to my lifestyle to help things along are only a good thing. If you’re stuck in a bit of a fatigue rut, I urge you to give a low-sugar diet a go. What have you got to lose?
*All information can be found in Dr Terry Wahls & Eve Adamson’s book The Wahls’ Protocol (2015), published by Avery.
In our latest guest blog Christian tell us about his experiences on the MS-SMART trial...
It all began in 2015 when I saw the advert for the trial, I felt a little/lot hopeless with being secondary progressive and not taking any medication to help as at this time there are no drugs to help. I read up on the trial and completed a short survey to check my suitability for the trial, obviously being such a specimen I passed that with flying colours. A phone call follows and I was on. The trial places me on one of three drugs or possibly a fourth being the placebo. The three drugs were Amiloride (used to treat heart disease), fluoxetine (used to treat depression) and riluzole (used in the treatment of motor neurone disease).
The first day of the trial was a trip to London (Queen and everything) for a 9am start at the University College London Institute of Neurology. I was signed up and asked if I could take part in two further parts of research, one was a photograph of the layers of my optic nerve (about 20 minutes, they think they can tell speed of progression from the thickness of the layers) and the other a lumbar puncture. At first I said no to the lumbar puncture as I’m a bit cowardly but after a comment by a doctor and an hour and 18 minutes in an MRI machine I guilt-ed myself into agreeing to do it. The MS Smart trial itself was measured by an eye test with invisible letters, a walk test, MRI, peg board and a few cognition tests. Unlike the tests my neurologist sets me these were some that I actually could do without looking like a total drunk and even one that I was very good at scoring 56, 58 and finally 60 out of 60 so improving each year.
It was a long day and I think I drove home early evening. I had to return every month for a blood test and to pick up my tablets, after 6 months it reduced to every 3 months and after a year every 6 months. I live in Maidstone, Kent so it was a real day out in London for me. The tests were repeated after 1 year and on completion (2 years). In my naive mind I thought I would find out what drug I’d been taking for 2 years on my last visit but the last person does not finish their 2 years until April 2018, the results then take at least 6 months to work out so it could be 2019/20 before I find out. The nurses that took my blood and checked my tablets were fantastic, even Tiggy who made me scream like a howling banshee doing me a favour using a big needle to save time on taking blood as she needed extra. Ouch.
If I had the chance of doing it all again I would, the only real problem I had was relating to the second lumbar puncture which left me with a headache like brain freeze that lasted for a full week. I felt low after finishing my two years and the stopping of the tablets I was on, this is either a side effect of stopping the tablets or more likely just a feeling of no longer trying to stop my multiple sclerosis, I don’t like having no control.
The outcome of the trial was never to fix me but to delay or even halt the progression. I feel the same but progression is so slow I didn’t notice playing football one day to today bouncing off walls .
They are about to embark on a new trial using Statins, I was asked if I would like to do that too. We will see…
You can find out more about the MS-SMART trial on the MS Society website at www.mssociety.org.uk/ms-research/treatments-in-the-pipeline/ms-smart. Please note that this is an external site.