Hello, Hey, how ARE YOU?!?!?! Past 3 years has been full time in the NHS, gruelling, and not had time to make posts. Hopefully will again very soon!
You may have noticed that I just suddenly posted, about diet.
This is because I need somewhere to hold this info online, so I can post a link. It’s for a resource for my local patients, but I’ll slo share it here when it’s done.
Speak soon, I hope, with pictures and embelishments, til then, All the Very Best!
Miranda
My take on Diet & Supplements in MS.
( This advice is to go alongside your medical and disease modifying treatment, not instead of it. It’s not medical advice, but a personal viewpoint, and I am not a dietician. Ensure that any dietary change or supplement is safe for you with your conditions and medications.)
· Diet plays a huge role in health and disease. MS is a condition that involves inflammation, and everything we eat can either provoke more inflammation or help to calm it down and encourage regeneration. A low fat, plant-based whole food diet consisting of wholegrains, vegetables, pulses, nuts seeds and fruit is what is recommended by the World Health Organisation, see https://www.who.int/news-room/fact-sheets/detail/healthy-diet and is also the ideal to help stabilise MS and improve health. See http://www.overcomingmultiplesclerosis.org
· In some people, a protein in dairy ( cow,goat,sheep) milk and dairy products can trigger an immune over-reaction, leading to increased auto-immune behaviour. It also contains saturated fat. Completely avoiding milk and dairy products is a good idea. Ensure you get calcium from dark green leafy vegetables. If you become vegan, it’s a good idea to take a B vitamin complex. Ensure you get enough protein by eating beans, nuts, tofu, pulses etc.
· Some, but not all people with MS have food intolerances. If you have a food intolerance, it can cause an immune reaction in the body and thus aggravate MS. Look up ‘Leaky Gut’ theory online. Food intolerance blood tests ( eg York labs food intolerance test) are available privately and can identify immune reactions to certain
foods. Although it’s possible for them to be unreliable, and an ‘exclusion diet’ is recommended to identify intolerances, due to the fluctuations of MS, it can be hard to identify food intolerances using the exclusion method, so you may choose to use the blood testing.
The book ‘The MS Recovery diet’ by Sawyer & Bachrach discusses the role of food
intolerances in MS. There is also a huge array of recipe blogs and resources online to support diets which exclude common intolerances. Eg ‘Deliciously Ella’
Supplements that many people consider to address MS:
· Vitamin D3. minimum 5000 IU daily, unless sunbathing. To check for very low Vitamin D, you can get your vitamin D levels tested for around £30 at http://www.vitamindtest.org.uk/ if your GP can’t run the test. Ideally keep your blood levels at 150nmol/litre. Under the tongue spray is the best-absorbed.
· We still don’t know whether vitamin D deficiency is a cause or a result of inflammation, or which is the best way of getting vitamin D. Strong sunshine on bare skin is ideal, & it may be that in the winter months, a 10 minute sunbed (one that puts out UVB rays) once a month, if your skin is ok, is a better way to absorb the vitamin D & use it in the body. Ensure you have dark green leafy veg to supply calcium in your diet, and to find out more:, including how much vitamin D3 to give your children if you have MS, visit:
Sunlight & Vitamin D | Overcoming MS OMS recommends that people with multiple sclerosis keep their vitamin D level at 150 -225nmol/L or 60-90ng/ml. Those with a vitamin D level below the lower limit should consider a suitable mega-dose (this is a perfectly safe way of boosting a vitamin D level quickly). overcomingms.org or https://mstrust.org.uk/life-ms/diet/vitamin-d
Vitamin D | MS Trust Vitamin D is essential for bone health and immune system regulation and may have a role in multiple sclerosis too. Regular time in the sunshine could provide enough Vitamin D for good health, but you can also get it from your food or take supplements, particularly in the winter months. Low levels of … mstrust.org.uk
· As much high dose omega 3 essential fatty acids as possible; best supplied by drizzling at least 2 dessert spoons a day of cold pressed flax/linseed oil on your food, cold. Don’t cook with it, as this destroys the benefits, and keep the bottle in the fridge. http://www.flaxfarm.co.uk. is one supplier. Omega 3 is also present in pumpkin& chia seeds, oily fish, and dark green leafy veg (tiny amounts)
· B vitamins are only present in animal food, live fermented foods, yeast products ( like marmite, yeast flakes) or fortified foods. If you aren’t eating meat or dairy products, consider either regular fermented products like water kefir, live sauerkraut, live kim chi, or a B complex supplement.
· Pro-biotics There is a strong link between the health of the gut and auto-immune disorders, and lots you can do to help restore the health of your gut. Read up online or get a book on repairing and building up your ‘Gut Health’. Probiotics ( good bacteria) are an important part of this, along with avoiding intolerances, and supporting good bacteria by eating a diet rich in ‘prebiotic’ foods, and other possible supplements such as l-glutamine. Capsules or powder are preferable to milky drinks, available in health stores on online.
· Anti-oxidants help to protect brain cells; eat all the different colours of fruit & veg, especially the dark – black, purple, red. Recent research showed 66% less brain shrinkage with a supplement of 1,200mg of the anti-oxidant lipoic acid daily.
· Co-enzyme Q10 has shown benefit in trials for MS fatigue.
This post is just a little film that the MS trust made, interviewing me about relapses. I put it on social media, but forgot to share it here.
There is some editing that happened; for instance one thing that didn’t make it into the final cut but that is important to know is, that there is a rare, but real risk, which increases with the number of times that you have high dose steroids for relapses, of a very painful condition in the future, called avascular necrosis of the hip. This causes severe hip pain, is only diagnosable via MRI ( ie it doesn’t show up on Xray), and can only be resolved with a hip replacement. Otherwise, I hope it’s helpful.
This blog is an article in the last issue of the excellent New Pathways MS magazine, which they have kindly allowed me to share on my blog, too!
Hello and thanks for inviting me to do a regular column with New Pathways. As an MS Nurse with an interest in integrative medicine/ holistic health, when I explore a topic here, I will generally move from the conventional advice to exploring some of the more natural approaches that may also help.
Recent interactions with one of my very young patients, got me focussing on anxiety and PANIC ATTACKS! So here goes
Panic attacks are intensely frightening events that happen when our systems are overloaded with stress hormones, causing a dry mouth, pounding heart, feeling of shortness of breath, dizziness, shaking, and sometimes, tingling ( as we hyperventilate) and chest pain. It can feel as if you’re about to die – which of course, increases the anxiety! After a nasty experience with a panic attack, it can be easy to develop a fear of having another one.
Starting with the conventional, tell your GP what’s happening. The NICE guidelines for the medical management of panic attacks recommend firstly, education and monitoring, secondly, Cognitive behavioural therapy (CBT) or relaxation therapy, and only in extreme cases that do not resolve, an anti-depressant medication, such as sertraline ( which can have the dangerous side effect of causing suicidal thoughts in a minority of people)
The NHS Website has a handy self-help guide: http://www.nhs.uk/Conditions/Panic-disorder/Pages/self%20help.aspx
I had my own experiences with panic attacks as a teenager, living abroad and drinking way too much coffee for my system, so all these suggestions come from an amalgamation of personal experience, nursing experience and learning!.
So let’s have a look at both immediate and long term strategies for mastering this problem.
If you feel one coming on:
Remember: Panic attacks aren’t dangerous. Remind yourself that it’s happening because of anxiety; your body is OK, and the very worst that could happen it that you could become dizzy from breathing too fast , and pass out, after which, your body will regulate itself again, and you’ll go back to normal. If you’re driving, pull over.
Change your focus from scary sensations, to something else that’s tangible – a sound, a feeling, a smell – part of being ‘mindful’ I found that focussing on something else – squeezing my toes and calf muscles, for instance, could distract me. Even searching for a specific item in a supermarket, or counting. Having someone chatting to you, perhaps, squeezing or massaging hands, also helps.
Regulate your breathing. Slow your breathing and count it in and out, starting with a count of three, and slowing if you can, to a count of five.
Rescue Remedy is a homeopathically diluted ( meaning that it works on an energy level, rather XX UNLIKE than like herbal or conventional medicine, and is safe to take whatever other tablets you may be on) Bach flower remedy, that many people find effective for times of crisis. See http://www.nelsonsnaturalworld.com/en-gb/uk/our-brands/rescue-remedy/the-rescue-story.There is also a spray, and pastilles; use when you feel at risk of panic attack.
Preventing further panic attacks.
Gaining mastery over our states of mind is a lifelong learning process, and something we will probably never completely perfect. However, there are ways to prevent complete overwhelm from ruling us.
Anxiety and panic attacks can be very isolating.
Connecting with others and having their support defuses this feeling, so tell other people who care about you, and let them know how they can help you through.
In healthcare, we have a tendency to medicalise everything, and by doing this, we sometimes miss the obvious. It’s worth taking some time to think about the practical issues that may be causing feelings of anxiety and panic, and to ask – are there are any practical actions that can be take to make things easier? If something feels overwhelming, is there any help you can get? Can deadlines be extended? Can you get workplace support? Do you have to do things in the same way or can changes be made? Can a charity be approached to help fund an item that would help, but that you can’t afford? I often use www.Turntous.org for this. Getting organised, setting realistic goals, getting help, and taking small steps and deciding on future steps can help to restore a sense of equilibrium.
Because the hormones caused by stress are ‘burned up’ by exercise, making exercise, as much as you can, a regular part of your routine, is a powerful assistance in prevention.
Unstable blood sugar can also contribute to panic attacks, so coming off sugar and eating whole foods is helps. Coffee can cause anxiety and panic symptoms all by itself in susceptible individuals, so cut caffeinated coffee out completely.
Herbalists often recommend ‘adaptogens’ – herbs with the ability to lower stress hormones or increase resilience to stress. You can learn more at: http://nourishholisticnutrition.com/what-are-adaptogens-and-how-do-they-work/
One of the most powerful tools to become more resilient to stress and prevent anxiety and panic attacks that I have found ( through personal experience) is something called HeartMath. This is a very simple technique where you breathe in a rhythm of 5 (seconds) in, 5 out, in one continuous flow, whilst focussing on heart felt positive emotions, in the heart area. Technology can be added to allow teaching or self-monitoring using gadgets, or a sensor connected to heart rate variability display, but the basic technique is as free and as old as the hills; however, done regularly, it has the most profound effect on resilience to stress and mental, emotional and physical health. See https://mirandasmsblog.com/category/heartmath/ for my study in people with MS, and http://www.heartmath.com for more information.
Likewise, anything that helps to restore a connection to a sense of inner peace – 
meditation, deep relaxation, helps to prevent overwhelm and retain balance. You don’t need technology to meditate, but there are loads of apps available now for phones, like http://www.headspace.com. These type of things need to be done daily to build resilience to stress, to be effective.
Moving into the world of energy and its flow, certain positions help to ‘ground’ us and defuse overwhelming feelings of panic. There’s a wealth of yoga exercises that strengthen and ground, but also some quick tricks, like ‘Cook’s Hook-ups’ from Educational Kinesiology: watch this video, and do try this at home!
https://www.youtube.com/watch?v=W8Ns-2yENgc
pic (c) Maryam Webster http://maryamwebster.com/stressrelief/
It’s not always possible to take up a strange position, especially if you’re at work or on the tube for instance! But Mudras, or hand-yoga is often possible!. Mudras change the flow of energy around the body, affecting physical and mental states, and are a part of the Indian system of medicine called Ayurveda. Here’s a link to the mudras for anxiety and depression https://youtu.be/X8OgsX9b3JA.
image from http://www.stylecraze.com/articles/8-yoga-mudras-to-overcome-any-ailments/#gref
In summary, panic attacks can be caused by many factors, so having a multi-factorial approach, with patience, to achieve the goal of mastering them, makes sense. I hope these resources are useful, and if you have your own personal tips, please do share them by commenting.
All the best, Miranda
We very sadly recently lost a member, who died as a result of a deep vein thrombosis, or DVT. A DVT is a clot that forms in the leg, but then travels in the circulation and blocks off a narrower blood vessel somewhere else in the body. Our greatly missed friend was someone who could walk, with a frame, but only just. A powerful frame, tall, with a bit of weight – these things put more pressure and constriction on the veins in a seated position. On his own admission, he didn’t drink much throughout the day. He hadn’t been able to access his physio or exercise in the gym for some weeks as awaiting a wheelchair accessible vehicle, and mobilising was a struggle – he was awaiting a baclofen pump.
We wanted to get everyone thinking about their own risk factors, and please, to take the necessary steps to help avoid this sudden and possibly fatal incident.
The main cause of DVT is immobility – especially during or after surgery, but can occur without surgery. Things you can do to protect against DVT include:
A DVT that is recognised in time can be treated to prevent further complications. So what to watch out for?
If you have any of these symptoms, with no other explanation, seek medical help immediately, to be safe.
This drug trial is now recruiting for people with PPMS, in London. It’s a drug with exciting possibilities, not a ‘repurposed’ medication.
Here’s what Professor Giovannonni of Barts hospital and http://multiple-sclerosis-research.blogspot.com has to say about Laquinimod:
“As you are aware I am very impressed by the laquinimod phase 3 results. Why? Laquinimod is a drug that does not have much effect on inflammatory MS disease activity, i.e. relapses and MRI activity (Gd-enhancing and new T2 lesions). Despite its weak anti-inflammatory effects laquinimod has an impact on disability progression, that appears to be independent of relapses and it slows the rate of brain atrophy. All this points to laquinimod having neuroprotective effects downstream of inflammation. It now appears that laquinimod may be working on glial cell activity and the innate immune system; laquinimod down-regulates the mechanisms responsible for the slow-burn we see in MSers. Are the laquinimod results reliable? Almost certainly they are; why? Mainly because there has been two large phase 3 studies showing the same effect. This makes the chances of this being a chance result highly unlikely.”
and here’s another post about it from the pharma side:
and here’s the link to the trial site from NHS choices website.
Exciting opportunity if it feels like you have nothing to lose, but ALWAYS REMEMBER TO ASK THESE QUESTIONS!
Questions to ask when considering taking part in a trial:
What are the potential risks?
How many people/ what percentage have these risks
What are the potential side-effects?
How many people /what percentage get these?
What can be done if I do have a side effect or risk? Is it reversible?
What are the potential benefits?
What percentage have had these benefits?
How much of these had similar condition at a similar stage to me?
How long do they last?
Is more treatment necessary?
How much does it cost?
Will you give information either to me or to my doctor about what therapy I have undergone?
How will I be monitored? Eg scans, bloodtests etc
How often will I have to return for follow up? Is there a charge?
Will they pay my travel expenses?
How will I know if it’s worked? What’s the timescale for improvement?
Is there a placebo ( dummy drug) group? If I’m in the placebo group, and the real treatment group benefit, will I have the chance to change to the treatment group?
If I have the treatment during the trial, and benefit from it, will I be able to carry on with it long term?
All the best!
Miranda
This is just a fun one! THANKYOU to all who have donated, here’s us ( Miranda, Simon, Rose, Joe and Beanna Olding) doing the Mad Monk XRunner for the Beds & Northants MS Therapy Centre, & the MS Trust.
So… it started with some nerves from my little Beanna….
There was a warm up & a good atmosphere at the start, couple of fireworks to send you off,
then straight into the stream – ( where I fell over because I was messing with my phone) – up the bank,
What’s that?’ Spiders web’, straight ahead? through the web, under the nets
Beautiful Rose
run run run
Then into the RIVER?!
some casualties….then up and over….
I said Over, dammit! … Dad to the rescue
then it was down that waterslide ( film) – over the river, & out the other side
Over the nets, over the bars, through the tubes
more running – simon faking it –
Then a few obstacles, and on to the finish line – Yay Team Olding! …. it’s on this little film
by the way, the phone cover I used was an ‘Ipega’; I got it for 14.99 and it seemed pretty cheap from china… but my phone survived!
If you’d like to help boost the fantastic total that people have helped us to raise, our just giving pages are open until the 17/8/14 – please use the just giving buttons at the side of the page at the top – Thankyou!!
As Benjamin Franklin once said, there are only 2 certainties in life; death, and the taxman, (!) and you don’t need to have a life-limiting condition to make plans about what you want to happen in various circumstances that could, possibly, end life. But how many of us have?
At the MS Therapy Centre in Bedford, we sadly lost a member recently; who’d been getting along, managing with lots of disability, but had a very mellow outlook, a sunny smile, and life was still sweet. However, a sudden infection in this sort of case, can prove fatal, and this time, sadly did. Losing her company coincided with me visiting Leeds for an excellent study day run by the MS Trust, about end of life issues.
Hello Leeds! & Thankyou, MS Trust
Well, I can tell you that as a nurse, I’m perhaps more aware of the ‘circle of life’, and my husband is under strict instruction that should anything ever happen to me, he must ensure that my legs are shaved and my makeup is on at all times – and apart from that, I’m not bothered!
dear hubby, – don’t let this happen!
But what other options are there, and how can you ensure that what you want to happen, will happen?
What I learned yesterday, is that although there are various forms you can fill out, it is just as valid to put your wishes in a letter, to be shared with the GP and close family/friends, kept with your notes with any health or care providers, and on the fridge at home if you have been going in and out of hospital recently.
Planning for future care doesn’t mean that you can’t change your mind later, and restate your intentions, but sometimes, if you do become very unwell or disabled, it can be hard to make your wishes clearly known. Putting your wishes down on paper can give you more control, and give yourself and family members of carers peace of mind, that in the heat of the moment, what happens is what you want to happen.
In law, we don’t have the right to demand certain medical treatments, and the default position of our health service is to always treat what can be treated. We do have the right to refuse various types of treatment however. So things to think about are:
See me to discuss these issues further, or help to draft up a letter.
On a lighter note (SUUUUUUCH a bad pun!) Last year, one of our members emailed me to let me know how much better he was feeling after just a short time using a lightbox. Here’s what he said then:
Hello Miranda,
Further to our chat in the car park at the MS Therapy Centre on Thursday, here is the link to the light box I was talking about:
http://www.amazon.co.uk/SAD-Light-Box-Medically-Certified/dp/B00A6SHSHY
I found it on Amazon for £44, plus about £5 p+p, which gives a total cost of about £50.
There are others which cost in excess of £100 but, having read the reviews and specifications, they all seem to do the same job.
In my totally unscientific testing, I’ve found that I feel better and have fewer symptoms if I have the light on when daylight levels are low.
So I use it when it is raining, fully cloudy, or just more cloud than sunshine and mainly first thing in the morning and towards the evening.
I have it sitting about 3 to 4 feet away, at head height and just over my right shoulder when I’m working at my desk on my computer.
I wouldn’t recommend having it pointing at one’s face as it is very bright and would likely lead to eye strain.
I have only had it about a month, but have noticed a difference on days with heavy clouds when I haven’t used and when I have.
I’m looking forward to seeing what difference it will make this coming winter.
If you’re interested, I’ll let you know in the Spring whether it worked or not.’
Well, in the interests of science, journalism and health, I thought I’d follow that up after 1 year, in these gloomy days of February! And the answer is, Yes! He still finds this very helpful, reporting that the warmth and brightness give a definite sense of wellbeing, it appears that urinary urgency is reduced, and he has a marked decrease in fatigue/improvement in energy levels, and is able to work until about 5.30, instead of about 3.30pm each day. Very Interesting. Thankyou, mystery tester.
Remember that lightboxes don’t get you making vitamin D, which is important especially at this time of year; a sunbed will, as long as it includes UVB rays. As long as you’re responsible about your skin ( not using sunbeds to get a tan, but a quick dose to just before you start to change colour) there’s no harm in using both… but roll on summer!
It’s all going on inside us…
and below there’s a transcript of a functional medicine doctor narrating to the video so you know what you’re looking at:
17th International Symposium on Functional Medicine
Cellular StructureNarration—“TheDance”
Jeffrey Bland, PhD
5/20/2010
(Start Transcript)
I think the best way of demonstrating “dance” is to show a little visual, so if we can go to the video. I’m
going to take a little bit of your time (3 minutes), and we’ll just talk about the emerging view of the
dance.
Here you are looking at lymphocytes, right? Traveling down the bloodstream, winding through the
membrane receptors, the cellular architecture, creating signals through the bilayer of the membrane,
through the laminar structure, creating architectural changes in lipoproteins.
You see the lipid rafts. These lipid rafts are transport proteins that are involved with cholesterol
phospholipids that then engage the internal workings of the cell with the outside activity that signals
through the actin and mycin neurofibral network to create, then, messages that transduce through the
cell. This is called intercellular signal transduction, that travels down through this lattice network—this
gelatinous structure—to ultimately reach the deep structures of the cell, the various organelles: the
lysosome, the mitochondria, the ribosome, and ultimately the nucleus.
This is constantly being reformed and regenerated all the time, in real time. It’s not static; it’s dynamic.
It’s being responded to in part by the environment itself. As you have this kind of re‐creation process
occurring, it is recreating itself in the context of the environment that is changing as these fibrils are
made, then broken down, and then re‐made. It is re‐forming the cellular architecture to engage in a new
phenotype.
You have these transport molecules that are transporting throughout the cell these extraordinary new
machinery that are going to produce the new phenotype of the cell in response to its changing
environment. And as the information, then, is transduced into the internal portion of the cell, the cell is
this plastic environment that is dynamically changing the molecular configuration to respond, in fact, to
those new environmental conditions, and in so doing, you are producing new proteins like ribosomes.
You are producing new posttranslational protein alteration by phosphorylation, glycation, oxidation.
These proteins, then, travel to various organelles like the mitochondria, the energy powerhouse of the
cell, where they enhance bioenergetics. Or they may, in fact, move themselves into the cellular
membrane, where they translocate and become part of a plum pudding model of the cell membrane—
become antennae that will pick up new messages from the outside environment that transducer new
information to the cell.
The cell is a constantly dancing, changing, morphing, altering, dynamic process that is creating a
rhythmic response to a changing environment, and eventually it leads to the expulsion of various
proteins that send outside signals. These may be cytokines. These might be prostaglandins. These might
be hormones that then send distant messages to altered parts of the body as all of this rhythmic,
dynamic process is occurring.
It is a demonstration that we are in a constant dance—that what we think is static is not. It is all
dynamic. It is all holographic. Every cell is in connection to every other cell. I
I’m Warwickshire at the MS Trust annual conference! Most impactful new learning so far?
Ok, soon to be published research by Jeremy Chattaway on the use of statins in progressive MS to reduce brain shrinkage.Everybody’s brain shrinks! by 0.2% a year. But for people with MS, the average is 0.6% a year.
This was a phase II trial of Simvastatin, a commonly used drug fro cholesterol ( that’s right, it reduces fat in the bloodstream). It also has ‘profound immunological effects’ and can cross the blood brain barrier ( ie get into the brain)
10-12 years ago this was trialled in relapsing remitting MS, but did not become an accepted treatment. Because secondary progressive MS also has features of inflammation, though in a more slow burning sort of way, it was decided to trial it, at 80mg daily. That’s a high dose, double what a lot of people with high cholesterol might take.
140 people were randomised to take this or a placebo. after 7 years, brain shrinkage in the group taking the drug had halved to 0.3% ( almost the normal rate).
Now I really hate putting my hand up to ask questions at these dos, because it’s really scary, you have to use a mike, everyone looks at you, and some neurologists are very dismissive and make you feel like an idiot in front of all your peers…. but I had to ask
” Do you have any idea what the mode of action is for simvastatin, and is it associated with reduction in saturated fat in the bloodstream, or not?”
With great releif, that was replied with ” Very good question!” .. and the answer that they really don’t know. Could it be “microvascular? a protective effect? or to do with cholesterol? All of this is discussed in the paper, which will be out soon!”
Phew. I hope someone will appreciate my sweat and blushes.
Also in Dr. Chattaway’s presentation was the new research recruiting now for people with 2ndary progressive MS, which I already shared in the post on MS Smart.
Additional understanding for me was the process they did of trawling 30,000 existing drugs that could possibly have form in protecting brain volume or nerves, to come up with the 3 most promising –
People who enlist in the research to find out if any of these agents can protect the brain from axonal ( neuronal) loss, and thereby slow or halt progression, will be put on either one of these drugs, or a placebo ( dummy drug) for 2 years, and followed up with the usual clinical assessments, plus about 3 MRIs. There will be centres all over the UK so that you don’t have to travel too far.
Right. Now I’m off to get ready for the fancy dress gala dinner, subject, favourite childhood character. anyone else remember Pippi Longstocking? And later, i will be able to have a bath, with Nobody interrupting me!! More info, plus Photos( but not of the bath) later!
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