8 things I’d do if I got diagnosed with MS

to-do-list DOING NOTHING IS NOT AN OPTION!! MS can have a very serious impact on your future quality of life. All measures you can take to stay well, have the most impact when they are done early on, and stuck to consistently. Nobody knows what causes MS; but it’s agreed that genetic susceptibility can combine with environmental factors to trigger the auto-immune confusion that causes the body to attack it’s own myelin.

As far as the disease process goes, It’s widely believed that the early inflammation causes damage, which causes later degeneration, but we now know that degeneration is also a factor right from the start. However, there is a lot you can do to combat both inflammation and degeneration, both with medical treatment and your lifestyle & nutrition. Having worked as an MS specialist nurse for about 13 years now, here’s what I’d do if I got a diagnosis of MS:

1) ADDRESS INFLAMMATION & DEGENERATION WITH DIET &LIFESTYLE. Get George Jelinek’s book ,’Overcoming MS’ and follow all the dietary and lifestyle recommendations to the letter. This involves

Plant based whole food diet                                                                                      High dose vitamin D3                                                                                                  20g omega 3 oil                                                                                                        Exercise                                                                                                              Sunshine                                                                                                                Meditation

I consider this to be a rock solid foundation for good health, whether you have MS or not. It’s also so great to keep hearing individuals stories of improvement, even with long-standing and progressive MS, following this approach, and both Jelinek’s, and more and more research on diet and disease backs up this evidence based approach. See www.overcomingms.org

2) Find out about your options re drugs. I am not going to be talking about diseases modifying treatment (‘DMT’) choices here, only broad concepts.

MS drugs aim to stop or reduce  inflammation, manifested as relapses, in the hope that this will prevent the degeneration. See the infographic in my Alemtuzemab about the relationship between safety and efficiency of the various treatments available.

An important point to consider is that some of these more effective drugs are ‘second line’ treatments, which means they are only available to you on the NHS if you have already tried the standard drugs. There are also sometimes drug trials recruiting, where you can access a drug as part of an experimental trial. (see other posts) There is a link on the MS Society website to find out what trials are ongoing and how to get involved in a trial.

MS drug treatment is a fast changing topic and you need to have a serious discussion  with your MS Nurse and/or neurologist to find out what you are eligible for, and then read round the subject and discuss to make an informed choice.

Make sure the information you use to make your decision is as objective as possible, and not coming directly from the companies making the drug. www.msdecisions.org is a decision making tool that’s been put together by the MS Trust, the MS Society, the UK MS Specialist Nurses Association and the Department of Health, so its’ as objective as you are likely to find.

Last important point: The earlier in the disease process that a drug is used, the more effective it is likely to be.

3) Some – not all – but some, people with otherwise unexplained medical conditions, have an underlying food intolerance, and you can be completely unaware of the problem. If you do have an intolerance, for example, to gluten, then every time you eat that food, you set up a chain of inflammation in the body, which can certainly exacerbate any auto immune condition.  For that reason, I, personally, would also want to identify food intolerances. Finger prick blood tests are available online from companies like York labs and Lorisian. There’s a lot of controversy about them, and they have been found sometimes to be unreliable, with a tendency to just show up with whatever you’ve eaten recently. Another way is to spend some weeks doing s ‘exclusion diet’, to see if you can find any cuplprits. Here’s one example: https://avivaromm.com/elimination-diet/ . The difficulty here is that MS is a condition with ups and downs anyway, so it’snot necessarily going to be clear.

However, in my experience, when people who have a food intolerance identify and avoid that food, they get a lot better all round, so its worth doing.

4) Gut health There’s a growing understanding about how problems with the integrity of the gut wall,  (the tight junctions that prevent the wrong molecules passing through into the bloodstream, triggering this type of food intolerance) and the right mix of bacteria in the gut, can contribute to auto-immune diseases. This is a huge topic – search ‘heal your gut’ or similar. There are various ways to do this, by avoiding food intolerances, using supplements like the protein L-glutamine, various products to kill off any overgrowth of yeasts etc ( as in step 5) and probiotics.

Then, hopefully, your exclusions don’t have to be forever.

 

5) Consider a clear out. Environmental factors combining with genetic susceptibility is what is thought to trigger MS , and as we are still unsure exactly what those environmental factors are,  there is still a lot of interest and research going on into the role of viruses etc in MS. Even if this turns out to have nothing to do with the cause of MS, any inflammatory condition will be worsened by an overload of any organisms that should not be there, whether they are yeasts, bacteria, virus, or parasites. People who are concerned that they may have an overgrowth of yeast, wrong gut bacteria, etc may want have a ‘clear out’ by doing a  3 month ‘detox’ with a strong natural detox agent. I like something called SOS-Advance, which is a colloidal suspension of strong anti bacterial, anti viral, anti parasitic plant oils like oregano, neem etc, but there are plenty of other herbal ‘de-tox’ products. Be aware, before starting any detox product, that it’s possible to feel really grotty for up to a week at first, if you have a ‘die-off’ reaction. If this happens, drink more water, rest, make your diet light and fresh, treat any constipation, and shower/bathe frequently.

6) Eat Really good Food – it’s not all about avoiding stuff-  food has so much power to affect the cells of our bodies for brain and nervous system health, so read up on a wholesome plant based diet, and ‘eat the rainbow’, especially dark green leafy veg.

7) Becoming more resilient to stress. Super important. We know that unmanaged stress causes and inflammatory cascade in the body, and there’s enough research to identify it, along with infection, as a trigger for MS relapses. There’s load of research now on the power of meditation, mindfulness, and relaxation. Personally, and especially if you struggle to fit meditation or deep relaxation into your day, I like the HeartMath technique, where you learn to synchronise your heart rate variability, and get feedback as to how you’re doing. In my clinics, I use the desktop teaching program, and send people away with the simple technique to do regularly, but you can now purchase an app version, available from itunes: https://store.heartmath.com/innerbalance

8)Read up on intermittent fasting, even if it’s just to use if and when you’re aware that you have inflammation or relapse going on.

So, TO SUMMARISE, and adding the Jelinek/Overcomingms recommendations:

AVOID:

  • saturated fat ( meat & dairy, coconut & palm oil)
  • other fats in processed food
  • unmanaged stress
  • physical inacitivty (as much as possible)
  • foods which you test intolerant to
  • smoking
  • eating too many calories for your needs

TAKE:

  • a plant-based, whole food diet
  • eating a ‘rainbow’ with special focus on dark green!
  • high dose vitamin D3, keeping blood levels around 150nmol/litre
  • 20g omega 3 – 2 dessert spoons of cold pressed flax seed/linseed oil fulfils this
  • probiotics
  • Any appropriate MS treatment drug
  • meditation/deep relaxation 30 mins daily to improve resilience to stress, or regular Heartmath technique.
  • as vigorous as possible exercise 30 mins, at least 3-4 x a week, outside if poss
  • the sun – as close to all over as poss, 10-15 minutes when possible
  • Lipoic acid 1,200mg – see this post

and take courage – many people with MS go on to live healthy lives well into old age. I would encourage you to do these actions to help you to be one of these. 🙂

Overcoming MS retreat, July 2013

Hello! the madness of the summer is over (which I thoroughly enjoyed!) and at last I manage to blog about this amazing experience.

So in July, I attended the first UK retreat run by the Overcoming MS UK (OMS) organisation,  (now a registered UK charity), who allowed me to go so that I can hopefully help them to run workshops etc in the UK, to help people with MS understand the effects of diet and lifestyle modification on MS.george Jelinek et al, breakfast OMS meeting

From left to right, this is Linda Bloom, patron & founder of OMS UK, who has MS herself and is very well, Sandra Neate, Prof Jelinek’s wife, an emergency medicine consultant in Australia, Professor Jelinek, professor of emergency medicine and author & founder of Overcoming MS ( & very fit & well with MS), Gary McMahon , head of OMS UK, all round top bloke, with a business management background, but utterly committed to health, having helped his wife recover form serious illness using dietary & lifestyle measures, Dr Craig Hassed, an Australian GP and  medical  university lecturer, author & international speaker on mindfulness, and me.

What did I expect?

Well, I expected that I’d already know it all ( how arrogant!) …. I expected that I’d enjoy meeting the Professor and crew, but might shy away from too much socialising, not wanting to feel different as an MS nurse…. I expected I’d be bored in the evenings and took lots of work to do…. and that I might get a bit hungry on the fully vegan diet provided, and took a big loaf of bread for my bedroom… and I expected that 90% of the focus would be on diet & supplements, with a sliver of meditation thrown in for good measure….

What actually happened?

a) I didn’t know it all… & I’ll share my new understandings here,                                             b) I enjoyed meeting every person on the retreat, was inspired by the company of so many intelligent, stimulating individuals and couples who dare to think differently and think for themselves,  had a lot of fun, was never once bored, never did any work (!), and am actively staying in touch with the group via an email group because I want to!                     c) Was absolutely stuffed, because  the food was tasty, vibrant, delicious and really ‘stuck to your ribs’.                                                                                                                             d) I got my focus back through meditation, and realised how powerful the effects of even a boring daily grind of meditation that you don’t even want to do can be !!

for this, it helped having a little cell, with no TV or internet connection….

launde abbey

So, first impressions happened the evening before the retreat, when I went out for a meal with the OMS staff/trainers. Firstly, the Professor is seriously fit and healthy looking, and runs or swims daily more than I do in a week ( if not 2), and comes across as genuinely lovely, thoughtful, intelligent, educated, and kind person. He is obviously ably supported by his wife Sandra, who shares his qualities, diet & lifestyle, and took on the sessions about the structure & role of different fats.

Prof Jelinek & his wife Sandra

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

During the meal, in conversation, the Professor talked about how he would like to slow down his international work running the retreats ( he does already have his full time academic medical work), and I felt honoured to hear him relate this personal anecdote, with some emotion:

He said that he had recently experienced a relaxation of the drive to always be working to get his message out there, and that it had caused him to wonder and reflect. For some reason his age suddenly became very meaningful to him, but he couldn’t work out why — until he suddenly realised that he had now passed the age that his mother had been when she died, severely affected by MS (she took her own life). And so somehow, he had ‘made it’ , and proved to himself the value of the work he’s been doing all these years.

I’m not going to re-iterate all the points of the OMS approach here, as I’ve talked about it many times, and its all available for free on http://www.overcomingMS.org , there’s the books, and also a forum on the website where people can discuss points; I’m just going to go into some of the things I hadn’t quite nailed.

We sat in a circle around the outside of a large room, or on beanbags in the middle, and there were about 40 people. Most people had come with their partner, and some on their own. Teaching was very good quality, and we had lots of time to ask questions and discuss fine points.

prof jelinek teaching UK retreatHere’s the Prof teaching, and Linda in mid leap… she & Gary had organised and were running the show, she had her new baby in attendance, and during the week was constantly jumping up and physically running, fetching, carrying, leaping over boxes & beanbags, & looking radiant throughout.

Flax seed oil – in the most recent research carried out by OMS ,taking this trumped fish oil for having reduced disease activity. The best amount and way to take it is 2 dessert spoons drizzled over food ( or used to dip bread or in salad dressing) daily, and apparently, the best tasting is from http://www.flaxfarm.co.uk  I just got some, and can confirm, it looks like sunshine and tastes… nutty but fine. Going to see if I can get a discount for Bedford MS Therapy Centre….

Meditation

I’m no stranger to meditiation, having taken it up in my 20s, however, life had started getting on top of me, and when I attended the retreat, I was pretty stressed.

I was taken aback by the serious focus on meditation – every day, we started and finished the session with a half hour mindfulness meditation, led by Craig Hassed. I also did some of my meditation again in my room on a morning. It was hard! It is hard! But it is real – it has real, measurable mental and physical health benefits, and it’s worth doing every single day. By the end of the week I felt that I had met my real self again, and I was OK. Meditation  deserves a post of its own, which I’ll do some time, but for now, here’s some links to give a taste of the sort of thing we were doing. Scroll down to guided meditations, mindfulness meditation (1,2 or 3) with Craig Hassed.

http://www.calm.auckland.ac.nz/18.html 

It’s school run time!  but to stop this being delayed any further – TO BE CONTINUED!

APS Therapy clinic in New Pathways magazine

Article published as of now. Thanks to the guys from the MS Therapy Centre in Bedford who’ve been game to share their stories. We’ve had lots of new stories generated even since this too! APS Therapy article New Pathways magazinenp80FINAL (1)  Here’s the PDF to the full article. Going to try to get just my bit, as this file is huge.

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

Specialist Study Presentation – July 2013

From the OMS website

Specialist Study Presentation – July 2013

Primary, secondary and tertiary prevention of multiple sclerosis: theory and clinical evidence

In 2012 an Australian research team led by Professor George Jelinek (Founder of Overcoming MS, http://www.overcomingms.org) published research in Neurological Sciences, a major international neurology journal, looking at the health related quality of life outcomes at 1 and 5 years after an intensive MS lifestyle intervention. The evidence presented showed an average of 20% improvement on MS quality of life scores across physical, mental and emotional domains for people with MS following a preventive risk factor modification approach to MS over a 5-year period.

Additionally, Professor Jelinekʼs team has also commenced a major international study of PwMS looking at the various factors in their diets and lifestyles, and their disease activity and disability. This will produce strong evidence about the effect of these factors in MS disease activity and progression. The respondents represent the widest possible range of ages, geographical regions, and with different types of MS. The outcomes of this research will be published in a series of papers during 2013 and Prof. Jelinek will discuss these findings at this seminar.

This presentation will be held on Thursday 4th July 2013 at The Belmont Hotel, De Montfort Street, Leicester, UK.

via Specialist Study Presentation – July 2013.

detox in MS

Following on from my last post about the thinking about viruses as potential drivers of degeneration in MS, here is some initial data from our experiment of using Omegawash as a strong natural detox agent.

At the MS Therapy Centre, Bedford,

12 people have tried taking this strong natural herbal and colloidal detox product, which claims to be anit-viral as well as anti-bacterial. anti-fungal and anti-parasitic. I asked people to fill in the MSQOL 54, a quality of life score with many different elements, both before and after.

Results: 1 person could not take it as it made them feel ill, & 1 for personal reasons; 1 I haven’t managed to follow up yet.

4 people took 1 bottle and did not notice any benefit or change, 2 of them have since had inflammatory activity and viral (coldsores etc) activity.

1 was in a very bad way when took 1 bottle as a ‘last resort’, with continual fatigue & very uncontrolled spasticity; this cleared up, although obviously, not cured of MS and its problems by any means, & MSQOL data has been lost.

4 people took a bottle, felt an improvement in their symptoms, and went on to supplement the 1 bottle funded by the MS Centre with 2 more bottles each.

Because the most noticable theme in people who felt they benefitted was an improvement in energy, this is the item I have looked at first.

Scores on the MSQOL for energy, out of 100, pre and post omegawash, for each of these 4, were:

Before  – 4/100     After  –   56/100

Before  – 24/100   After  –   52/100

Before  –  0/100    After –   72/100

Before  –  48/100  After  –   64/100

All of these 4 participants felt that the omegawash had made a significant difference to their energy levels. One of these had also made other changes over the same time period, starting hyperbaric oxygen, and changing her diet.

I have only just started to look at the questionnaire data.  I will report on this again once I have chased up my last participant, and looked at the other areas of the MSQOL, and identified any unifying factors in the people who reported benefit.

Today I could say that out of our tiny 10, there was a 10% drop-out rate, 40% no benefit, 10% possible benefit, and 40% reported significant benefits in energy ( and other areas of quality of life which I have yet to analyse). In the ‘responders’ group, there was an average of 39.5 point improvement in energy. Other reported benefits not included in the MSQOL included complete alleviation of bloating and vaginal thrush.

In the interests of science (haha!),’more research is needed’; but in the interests of ‘doing what you can asap as long as it’s not dangerous’, I thought I’d just let you know!

Omegawash is available from www.omegawash.co.uk.

As with all herbal products, you need to check that the ingredients are safe for you to use with your condition and whatever medications you take.

All the best, Miranda

Hello world!

This blog has grown from my work as an MS Specialist Nurse, 3 days a week at the MS Therapy Centre, Bedford, UK. I love my job, especially as I’m allowed the freedom to continuously explore ways you can optimise your health and life when you have MS, from both a ‘conventional’ and a more natural perspective.

Specifically, the blog is an expansion of my regular feature in our MS Therapy Centre newsletter. I’m going to upload all my old ‘posts’ so you can see what I’ve been thinking/learning about over the last few years; the new stuff will go in both places.

This last month has been an exciting one for me, new things that have happened are:

  •  Learning about APS Therapy ( Action Potential Simulation therapy)
  • Doing a teaching session on MS & the bowel on a Peristeen course;  I’ll try to upload it here.
  • Also I am still rounding up the feedback from those people who tried the natural detox product; more on that later!
 I should stick to one topic at a time.  So – APS Therapy
Recently met up with a friend, a nurse,who is now the leader of a fantastic pain management team in Hull.
She told me about the very very good results – people coming off medications completely – that a doctor working in a hospice in Hull had been getting with people with MS who had severe neuropathic pain, and severe muscle spasm, using APS machines. Their team had organised for  someone from the Dutch company who manufacture and supply the machines and training, to come and do a training day in Hull – which I managed to attend.

Basically this therapy looks a bit like TENS, but it’s a different type of electrical current. You put sticky pads on your skin, which are connected to the machine via wires, and then a direct current of micro-amps is directed to travel through the cells of your body, from one pad to the other.

APS machine for the MS Therapy Centre

The current simulates – ie is just like, Action Potential – which is the name for the way that electrical signals pass along a nerve. This apparently stimulates the release of more ATP, which is needed to create energy in the body, and also speeds up the detoxification from cells, and the result, after a period of treatment, is said to be reduced pain and increased energy.  So obviously I am excited!!

In Hull, a proper clinical trial is going to go ahead with a rehab team, pain management team and university in collaboration. In Bedford (!!) the doctor with the hospice experience has been kind enough to offer to come down and share her experiences of using this in clinical practice, so that we can find out

  1. how to use it
  2. how it works
  3. how we can use it effectively
  4. how we can use it fairly
  5. whether we can help people who benefit from it to fund ongoing treatment (?personal health budgets)
  6. whether we can add to the body of knowledge being gathered about it.
So this is happening on July 27th – can’t wait!
I will definatley post again on our experiences, and on everything else I think might be interesting to you!  All the best, Miranda