What is an MS relapse? How do you know if you’re having a relapse?

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.

 

Panic attacks – an integrated approach.

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 goesthe-scream

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.keep-calm

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.

rescue-drops

rescue-spray

 

 

 

 

 

 

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.hug 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.

lists

 

 

 

 

 

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.

come on girls!

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.

heartmath-waves

 

 

 

 

 

Likewise, anything that helps to restore a connection to a sense of inner peace – meditation-and-the-brain

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-2yENgccooks_hookup_fullsize

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.

mudra

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

 

 

 

 

How not to die from a DVT

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.

DEEP vein throbosis

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:

  • regular brisk walking – not always possible I know! But even whilst sitting,
  • If possible, regularly circle your ankles, get into a ‘tiptoe’ position and then lift your toes off the floor whilst keeping your heels on the ground.
  • when resting, when possible, spend some time with your feet higher than hip height.
  • Stay well hydrated – this keeps the blood less sticky and less likely to clot.
  • Research on the benefits of wearing Thrombo embolitic deterrent stockings (TEDS) has shown that there is no benefit, unless you have recently had an operation.
  • However, if your legs are swollen, or you have had thrombophelbitis, you can talk to your GP about getting grade 2 or 3 TEDs on prescription. You may need to first have test with a hand held Doppler scanner, done by a nurse.
  • They are available in different colours, and in open or closed toe options.
    • They should be removed at bedtime and put on first thing in the morning. It is important to put them on before your legs start to swell in the mornings.
    • Stockings should be replaced every 3-6 months. Each time you should be measured again, just in case the size needs to be changed.
    • You should always have at least two pairs prescribed so that one pair can be washed and dried while the other is worn.
    • Do not tumble dry support stockings, as this may damage the elastic.
    • They can be made to measure if none of the standard sizes fit you.
    • Support stocking applicator aids are available if you are unable to get them on. You can discuss this with your pharmacist or nurse.

A DVT that is recognised in time can be treated to prevent further complications. So what to watch out for?

    • Pain and tenderness of the calf.
    • Swelling of the calf.
    • Colour and temperature changes of the calf. Blood that would normally go through the blocked vein is diverted to outer veins. The calf may then become warm and red.

If you have any of these symptoms, with no other explanation, seek medical help immediately, to be safe.

DVT

 

 

Primary Progressive MS drug trial recruiting – Laquinimod

MRI

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:

http://www.drugdevelopment-technology.com/news/newsteva-and-active-biotech-enrol-first-patient-in-laquinimod-phase-ii-trial-for-ppms-4561605

and here’s the link to the trial site from NHS choices website.

http://www.nhs.uk/Conditions/Multiple-sclerosis/Pages/clinical-trial-details.aspx?TrialId=NCT02284568&Condition=Multiple%20sclerosis&pn=1&Rec=0&CT=0

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

 

 

Mudrun with an iphone! (+ waterproof case)

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….bea looking nervous

There was a warm up & a good atmosphere at the start, couple of fireworks to send you off,

water canoninto the stream you go!

then straight into the stream  – ( where I fell over because I was messing with my phone) –  up the bank,

up the bank

spider web ahead

What’s that?’ Spiders web’, straight ahead?  through the web,  under the nets

 

under the net

beautiful rose olding

 

 

 

 

 

Beautiful Rose

run run runyou can do it bea!mad monk xrunner

Then into the RIVER?!

into the river on the mad monk xrunner

mad monk!

 

 

 

 

 

bea swims the xrunner

joe swims the xrunner

 

 

 

 

drenched xrunners

another one bites the dust!

some casualties….then up and over….

Over!!

up & over!

 

 

 

 

 

 

 

I said Over, dammit! … Dad to the rescue

simon shows off his muscles

dad gives a hand

then it was down that waterslide ( film) – over the river, & out the other side

help!

we survived the Xrunner

Over the nets, over the bars, through the tubes

joe goes over the ropesMiranda Olding

more running – simon faking it –

simon fakes it on the xrunnersimon on the run

come on girls!

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!!

Planning to stay in control

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.

MS end of life study day Mirandasmsblog.com

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!

dear hubby, – don’t let this happen!

lipstick

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:

  • If you were taken ill with an infection, would you want to be taken to hospital, or treated at home?
  •  If you weren’t able to take antibiotics as tablets, would you want them intravenously? This can also be organised at home in most areas.
  • If you were extremely poorly, would you want to be put on a ventilator?
  • If your heart stopped, would you want to be resuscitated?
  • If the answers to these questions depend on different circumstances, what would those circumstances be?
  • In the event of becoming very ill or unable to communicate, what is important to you?

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.

lightboxRemember 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!

 

beautiful film ‘The Inner life of cells’

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

Stopping Brain shrinkage, new research on statins in MS, MS Trust Annual conference 2013

mstrust annual conference 2013I’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 –

  1. Ibudolast, a Japanese asthma drug, which reduced the rate of brain atrophy in people taking it for asthma
  2. Riluzole – a drug that people with Motor Neurone Disease have already been taking for some years which showed that it reduced shrinkage of the spinal cord ( showing that it reduced loss of neurones, and
  3. Amiloride – a well known blood pressure drug in the UK, which blocks calcium channels in the brain, and reduces brain shrinkage.

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!

APS Therapy for pain, pilot study

APS Therapy update; our first results for people with pain

APS effective for pain chart

At the MS Therapy Centre, we are trialling a new electrical treatment for pain, called APS Therapy (See previous issues for an explanation!)

Here’s a round-up of our results so far.
Some people have completed a course of treatment, some are ongoing, and some have only just started and had a few sessions. We are working hard to make sure we collect better data in future so we can answer more questions. We used the ‘Visual analogue pain scale’ which measures pain out of 10, with 0 being ‘no pain’ and 10 being ‘the worst possible pain’

Neuropathic pain in limb:  7/10 down to pain free; complete pain relief which lasts 4-5 days, but appears to need long term treatment as comes back after this time.

Neuropathic pain in the feet  and feeling  ‘like walking on hot sand’, constant, 6-7/10 down to 3-4/10 in 3 weeks, hot sand feeling down to ‘not very often’ and improvement in blue-ish discolouration due to poor circulation..

Hip pain 6/10 constantly, complete relief since the first week, has not returned, and a decrease in neuropathic pain in the leg from 4/10 to 2/10 in 3 weeks.

Back pain, 8-9/10, worse on exercise, down to pain-free, 2-3/10 on exercise. Treated x 2 weekly for 6 weeks. Has not returned, 1 month after end of treatment. Leg pain, ‘pounding, throbbing’, 8/10, down to pain-free, has started to creep back since recent sensory relapse.

Long term shoulder pain, 2-7/10 to ‘much better’ but has since had to stop treatment for personal reasons.

Hip pain 10/10 plus, no benefit. This could be because there’s a serious problem that needs attending to underlying the pain, or because high doses of opiate painkillers make the treatment less effective. We’ll be helping this person get the right investigations and treatment, and maybe try again later.

Arm pain, possibly radiating from shoulder, no cause detected by GP, 2-3/10 with episodes of stabbing pain 5-6 x a week at 10/10; down to 1& half/10, no episodes of stabbing pain after 2 weeks of treatment

Headaches, constant, 7/10 down to pain-free, and back pain 7/10, down to 1/10, plus complete relief from insomnia.

Chronic pelvic pain, 2-4/10 normally, 7-8/10 when bad, happening less frequently, tramadol usage has dropped from daily to 2-3 x a week, now reducing Amitryptilline also.

Hip pain, 8&1/2 /10, very severe, ‘sickening’, no change, although improvements in sleep pattern. We are helping this person get investigations carried out.

Hip pain, 7/10, 8/10 when worst, down to 4/10 after 3 treatments, but also had deep physio manipulation prior to starting!

Severe muscle spasm and spasticity, no change after 12 weeks +

MS fatigue; no change

MS fatigue; no change

Headaches, 4-6/10, 9/10 when worst, 2-3 x a week, for most of life, worse since starting Rebif, down to pain-free; has had one headache since starting therapy, when had not drunk enough water. Has not taken regular painkillers for weeks. Back pain, 4-6/10, 7-8/10 when bad, down to 3/10. Stopped Naproxen and Co-codamol use. Knee pain (which was unreported, as forgot about it) has disappeared. Much more energy, staying up past bedtime, cleaning.

People who’ve just started:

‘Squeezing’ altered sensation feeling, 7/10, 9/10 when worst, no change yet after 4 sessions; muscular pain in shoulder blade area, 4/10, 8/10 when worst, down to 2/10 after 4 sessions.

Shooting, stabbing, intermittent pain in knees, 5-10 -11/10 down to 4/10 max after approx 2 weeks

Tennis elbow, 8/10, worst 10/10, now 6/10, worst 8/10, significantly improved range of motion and no sleep disturbance due to pain, after one week’s treatment ( and also carrying on with Bowen treatment)

So in summary, in our study so far, 18 people have used the APS Therapy at the Centre, 17 with MS and one member of staff. 2 tried APS for fatigue, and 1 for spasticity, and disappointingly, these conditions have not experienced a significant benefit to date.

15 people used APS Therapy for pain. Of these, 13 have felt a significant reduction in pain, and 2 have not. 2 also report a significant increase in energy. Of the people with pain, 5 have achieved pain-free. Of these, 2 people’s pain has not come back since completing the course, one needs to maintain therapy once a week, and 2 are still completing their course of treatment.

We’re delighted that Denise, who many of you will know already from the Gym, has now been employed 3 days a week to also help run this project and help people to use the APS machines at the Beds and Northants MS Therapy Centre. If you are having a problem with pain, you can come and see me (Miranda) for a full pain assessment. If APS Therapy seems like an appropriate course of action and you:

a) Can get in 3 x a week ideally; twice if necessary, and

b) Can drink 1&1/2 litres of water a day, and

c) Have none of the following: heart attack, deep vein thrombosis, stroke or pulmonary embolus in the past 3 months, cancer, epilepsy, or pregnancy.

I will refer you on to Denise, to start a 6 week treatment plan. For some pain, APS Therapy may be able to completely and permanently resolve the problem. For some people it may not help at all, and for others, it may significantly reduce or resolve the pain, but need to be continued to keep getting the effect. In those cases we can help you to purchase your own machine direct from the manufacturers if you wish, and also to apply for charitable funding if money is a problem.

It’s very exciting to be working with such a new, drug-free treatment. We intend to start helping people to review their medication once they get a good result, with a view to reducing pain medication.

APS chart, pain, fatigue, spasticity

APS chart, percentage pain-free