MS bowel problems and what to do about them!

Now I have your attention with this picture of Fake poo – Bowels! Trouble with the bowel can be the bane of your life, so here we’re going to have a look at what can go wrong and what you can do to prevent or rectify things!

For the bowel to work perfectly, there must be intact nerve pathways from the inner and outer anal sphincters, all the way up the spinal cord, and down again. Any interruption to these messages can cause problems.

picture from Aliexpress.com

Let’s start with constipation. As well as changes to the nervous system, reduced ability to exercise, difficulty getting into a good position, reducing fluid intake because of urinary urgency, and medication, can all contribute to this problem.

Of course we always start by looking at diet and fluids, adding plant-based fibre, fruit, vegetables, pulses and seeds. Some old school wisdom that can be very effective include: 1 ripe pear daily, figs, prunes, and adding linseeds to cereal or porridge. Cold pressed flax-seed oil can have a 2 fold role as it’s the highest source of omega 3s, strongly anti-inflammatory, and for some, has a loosening effect.

 

 

 

 

 

However, in MS, sometimes, you can be doing everything just perfectly re diet and fluids, and still have a serious problem with constipation.  If you need to use laxatives, it’s important to understand how they work. The longer the stool stays in the bowel, the more your body draws water out, causing a hard, dry stool.

There are four types of laxative; bulk-forming, osmotic, stimulant, and stool softening. If you have enough dietary fibre, bulk-forming shouldn’t be necessary, and we hope to prevent the hard dry stools that stool-softeners treat.

In my experience, an osmotic, ‘macrogol ‘ product, like Movicol or Laxido, which contains indigestible plastic molecules to stop your body from absorbing water from the stool, is often helpful, but do find the daily dose that works, rather than first getting constipated and then taking it, as this can cause the opposite problem.

Senna or Bisacodyl are stimulant laxatives, increasing the luscular action of the bowel, and can also be used to add ‘oomph’, but if taken on their own, may just give you cramps. Try taking them at night, with the aim to catch the time that the bowel is most active naturally; after the first hot drink in the morning…

Some people find suppositories helpful; these can be glycerin, a simple oily substance that can loosen dry stool, or bisacodyl, to stimulate the bowel.

Constipation that has not responded to these measures may be treated with mini-enemas, (eg Fleet) which can reach a little higher.

 

Did you know that the natural position for humans to poop is in squatting? There’s a brilliant demonstration in this video, https://youtu.be/YbYWhdLO43Q advertising the ‘Squatty Potty’, a peice of bathroom furniture that helps get you more in that sort of position. Of course you can make your own position support system, and there is more than position at play in bowel problems in MS; however, it’s a good start.

For intractable constipation, one of the irrigation systems, discussed below, may help.

 

 

 

Bowel urgency and accidents

Sometimes, the nerve damage in MS can mean that it’s not possible to ‘hold on’, and for some people, constipation alternates with bowel urgency or incontinence. Sometimes, just solving constipation and getting into a routine can be enough to prevent accidents, but sometimes it’s not enough. Nothing can be more upsetting than having a bowel accident, but luckily, there are now very effective products available on prescription, which can help to prevent this happening.

For occasional looseness, Loperamide ( Immodium) can be used, either in tablet or liquid form. However, it’s not advisable for long term, especially if you also get constipation.

For longer term problems, trans-anal irrigation systems provide some people with MS with a life-changing solution. These are basically kits for pumping some body-temperature tap water into your lower bowel, using a soft, disposable rectal catheter or cone, whilst you sit on the toilet.

 

Once you remove the catheter or cone, the water is also released, and any stool that was sitting in the descending colon, is washed out. The action of the water can also stimulate a bowel movement within the next 10-15 minutes.

Once you’ve used the irrigation system, you know that the descending colon is clear, and that it would be very unlikely to need to go for the next 8 hours, unless you have a problem with diarrhoea or loose stools.

Peristeen:  https://www.coloplast.co.uk/peristeen-anal-irrigation-system-en-gb.aspx

Qufora: http://www.macgregorhealthcare.com/index.html

For people who would find hand-pumping impossible, there are motorised systems, including the ‘Navina’ by Wellspect, and the Irypump by B-Braun.

Speak to your continence nurse or MS Nurse to discuss your problems and be referred.

Qufora also has a bed system, that can be used for people who can’t sit on a toilet,

and a mini pump, which is very handy for people who just cannot get started, or can’t seem to finish off properly.

Posterior tibial nerve stimulation (PTNS)

PTNS is a drug-free electrical treatment for both bowel and bladder urgency and incontinence, which involves having several weeks of weekly, tapering down to less frequent, sessions, sitting with a tiny, ( hairs breadth ) needle attached to an electrical current, inserted at the back of your ankle.  From here the current travels to the sacral nerve plexus. It has about an 80% success rate. I recently had the chance to experience this and me and my colleague Emma, got to stick needles in each other, as Alison from Cogentix ‘Urgent-pc’ came to demonstrate. It didn’t hurt… very much at all! – and many people, ( including Emma)  don’t even feel it! It’s not currently available in our area on the NHS at present, although Bedford, Luton and Northmampton hospitals all have business plans to introduce it. It is available in some NHS hospitals, and also in many private clinics, and I have previously had someone referred for it for bowel incontinence, who did very well.

See http://www.cogentixmedical.com/patients/products/urgent-pc

 

 

 

 

 

 

 

 

Bowel accidents due to loose stools, is a different type of problem. Medical problems need to be excluded by seeing your GP, and you may also need to explore whether items in your diet are upsetting your digestion. The sugar Lactose in milk is a common suspect, and some people have a problem with almost all the simple sugars in foods, and have to follow a very strict diet which eliminates ‘FODMAP’s; see:

https://www.nhs.uk/Conditions/Irritable-bowel-syndrome/Pages/Treatment.aspx,

If absolutely nothing else works, and you are still being plagued with problems, then there are surgical options, including elective colostomy.

There are now so many options to help with bowel problems in MS , so ask for help,  and if you’re not getting anywhere, ask to be referred to a specialist bowel clinic.

 

 

 

 

Urine infections in MS – an integrated approach to prevention & treatment.

I always discuss the need to stay one step ahead of the bladder in MS with my patients, as having a urinary tract infection (UTI) can mimic a relapse and cause real setbacks.

Explain this to your GP, request they prescribe antibiotics at the first sign of infection, and that NICE guidelines recommend a longer (5–10-day) course for these ‘neurogenic’ UTIs.  It’s also worth taking at least a prescription away with you on holiday to prevent losing days trying to see a doctor.

Check! Whenever you experience new or worse symptoms of MS, always check for a silent UTI. Aswell as  visiting your surgery or MS nurse, you can also buy urinalysis dipsticks for home use. A change of colour to Leukocytes or Nitrites may indicate infection, which should be treated.

dipsticks

If you take antibiotics, top up with probiotics (good bacteria), during and afterwards, to prevent digestive problems and thrush, and boost your health and resistance to future UTIs. Lactose-free capsules or powder are better than sweet probiotic drinks. In fact looking after the good bacteria in your gut is a huge and important topic for all of us, and particularly if you have an auto-immune condition, and there’s lots of ways you can do this.

bacteria (1)

Also drink plenty of water, pee frequently, and cut out sugar to help your immune system fight back.

Causes.

One cause of UTIs with MS is the bladder not emptying fully, because the muscles involved are not working together properly. Struggling to start passing urine, feeling there’s some left, urgency, and UTIs can all be signs of incomplete emptying. This needs to be identified by ultrasound scan, generally with the continence service.

bladder ultrasound

Try peeing twice every time, but if a residual (left over) volume of 100mls or more is found, you may need to learn how to use intermittent self-catheterisation with small, lubricated, disposable catheters, to empty fully.

ISC can be liberating, but also potentially cause infection; technique and catheter type are important, so stay in touch with your advisor.

ISC

Prevention and natural treatments

If you seem to keep getting urine infections one after the other, it’s quite likely that you are just not completely throwing off one infection.

It’s a very dispiriting situation, However –  there are lots of things you can do to shake off and help prevent recurrent UTIs.

The most common bacteria causing UTIs is E coli, which can cause recurrent UTIs, as it can burrow into the bladder wall, and release spores after antibiotics are finished. However, it’s important that your urine goes to the lab, as rarer bugs are also possible, including from candida, which we’re not covering here today. GPs are recommended not to prescribe low dose daily antibiotics, but they sometimes help as a last resort.

e-coli bacteria

Sometimes antibiotic treatment no longer seems to work, or some people prefer to try herbal remedies with antibiotic properties. Stopping the bacteria from sticking to the bladder wall and flushing it out when it does is the aim of these natural agents. There are many, with varying degrees of research to back them, but the ones that I have seen most success with are: (Nb I don’t get any benefit from these companies!)

For prevention:

  • Concentrated cranberry tablets,  eg Cysticlean

http://www.cysticlean.co.uk/main/index.phpcysticlean 2

For prevention ( low dose) and/or treatment ( full dose)

  • D-Mannose; a simple sugar that e-coli latches on to and can be flushed out on, and is now being tried by consultants at the national hospital for neurology and neurosurgery.  https://www.waterfall-d-mannose.com/dmannose-options.html

d-mannose

  • SOS advance; a colloidal solution of antibiotic herbs that can be used preventatively or at times of infection.

http://www.sosessentials.com/s/

sos-advance

For recurrent UTIs with an indwelling catheter

If after a catheter changes, with symptoms, ask District Nurses to test from the port after 48 hours, and have an antibiotic at the ready; test again 48 hours after completion.

The ‘Bardex IC’ ( infection control) silver tipped catheter has been shown to reduce UTIs, (reports infections 3.7 x more common in those catheterised with a normal catheter vs a sliver tipped one) as it prevents a biofilm forming. It becomes effective after around 3 months ( and has to be changed regularly like all indwelling catheters), so don’t give up too soon.

Uro.13.BardexIC2way.0165SI (1)

If all else fails, ask for a referral to urology, to check for bladder stones, and possibly for bladder washout, and to discuss possible treatments.

See a doctor if you have a fever, chills, pain in the flank area, nausea or vomiting, and always check any natural/herbal remedies are safe to take with your condition and medications.

UPDATE: – I thought this comment from Jenny was important enough to update the blog with:

“I thought I’d let you know about some other treatments for UTIs that are being tried on me that no-one seems to know about (not even doctors in Oxford, nor the MS specialist nurses – I’m keeping them posted too)..

So one is Uromune, supposedly a vaccination against four strains of UTI including e-coli. It’s inactivated bacteria taken in pineapple juice under the tongue once a day for 3 or 6 months. They’re doing a trial in Reading and there are details here http://www.readingurologypartnership.com/uti-vaccine/4594063839 – you can’t get on the trial if you self-catheterise but can pay privately for it (not cheap – including seeing the consultant it was about £600 for me).

And the other is iAluRil, a GAG layer replacement, which you stick inside directly with a catheter, to replenish the non-stick lining of the bladder, and keep in for as long as poss (I do it at night and sleep with it in – it’s only 50mls). There are apparently two places in the UK which don’t do this and Oxford is one, so I go to the Royal Berks for that, on the NHS. Info here http://ialuril.co.uk/

Apologies if you knew all this and that just took up time that you’ll never get back! But I thought, if you don’t know about it, you’re the sort of person who will be interested and use the info to help people. (btw I have no financial links to any of the organisations – am just a person with MS and RUTIs who’s trying everything!). And also I should let you know that I’ve been on the Uromune for nearly 3 months now and just had an e-coli infection… hey ho.”

–Dear Jenny – this is fab; I’m going to post it up as an update so everyone can see, thankyou. I do have a patient who was on the immunisation trial but unfortunately it did not work for her. The aAlUril I have never heard of and am going to look into. Thanks again for your most useful comments!
all the best, Miranda

 

 

Trials you can take part in: Statins in progressive MS, and Biotin in progressive MS

biotin 2

There’s a lot to think about if you’re considering being part of a clinical trial.

Some trials are more risky than others. These two are probably less risky, but you still need to ask:

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?

Biotin

I’ve posted before about biotin in MS. A medical preparation of it has been given the name MD1003, and it is now being trialled to see its effect on people with progressive MS.  If you’re interested, here are the contacts. Don’t forget to ask those questions!

Trial Location(s)
Southern General Hospital
Glasgow
Scotland
G51 4TF
Musculoskeletal Department; Freeman Hospital
Newcastle upon Tyne
NE7 7DN
Clinical Trials Unit; Main Hospital; Salford Rooyal NHS Foundation Trust
Salford
M6 8HD
Barts and The London Hospital
London
E1 2AT
University College of London, Institute of Neurology
London
WC1N 3BG
Edinburgh
EH16 4SB
Trial Contact(s)
Primary Trial Contact
abdelkarim Bendarraz

Statins

statins

I’ve also posted a long time ago about statins.

My personal suspicion is that the beneficial effects are from lowering the bad fats in the blood, and that a safer and more healthy way to do this would be to adjust lifestyle factors; primarily diet, along the lines of the advice at http://www.overcomingms.org…. However, there may be some other mode of action, or radical lifestyle change may not be possible for you, in which case, you can register your interest for the trials, so that somebody will contact you when they start recruiting, which should be very soon ( summer of 2017), here:

https://www.mssociety.org.uk/forms/ms-stat2-information

Its’ been a long gap –  hope to post again much sooner this time,

all the best

Miranda

 

Lipoic acid for MS

Hi! Hoping all had a merry Christmas and will have a wonderful New Year, full of everything good, and the strength to do everything possible for vibrant and glowing health and happiness. !

Been asked by lots of people to elaborate on the short report about an easy to get hold of supplement, Lipoic acid, in MS, that was part of this blog post; most importantly, where to get supplies of the dose that was used in the study ( 1,200mg daily).

antioxidant

“Lipoic acid for neuroprotection in secondary progressive multiple sclerosis: results of a randomised placebo-controlled pilot trial,1” was reported on by Dr. Rebecca Spain, MD, MSPH, a neurologist in the Oregon Health & Science University Multiple Sclerosis Center, also working with the VA Portland Health Care System, at ECTRIMS 2016.

Pic source:   http://www.desimd.com

Patients in the study had secondary progressive MS, were, on average, 58.5 years old, and had an average Expanded Disability Status Scale (EDSS) score of 6. ( walking with 1 stick)

The trial was randomised; around half (27) took 1,200 mg of lipoic acid, around half (24) took a placebo for 96 weeks, and neither the patients nor the clinicians knew who was taking which. They measured brain atrophy ( shrinkage), which is a way of showing loss of neurones in the central nervous system, and also neurodegeneration in the spinal cord and eye,  neurological functions, cognition, walking, fatigue, and quality of life.

Five participants in the lipoic acid group, equaling 9.8 percent, quit the study early, but the remaining patients took about 80 percent of their daily lipoic acid doses.

Researchers found that the annualized rate of whole brain tissue loss was significantly lower in patients receiving lipoic acid. After two years, treated patients had lost about 0.4 percent of their total brain volume, while those in the control group lost 1.3 percent during the same time; brain atrophy was reduced by 66%, almost to within normal limits. Those receiving lipoic acid were also found to walk faster, and had half the number of falls.

The treatment did not increase the occurrence of adverse events, but researchers noted that lipoic acid was linked to more stomach problems.

The author, Rebecca Spain when interviewed by Multiple Sclerosis News Today, said,

“The slowing of whole brain atrophy was remarkable. We can use this pilot study as the basis for designing a multisite clinical trial, which will help us answer questions about how lipoic acid works and whether it can indeed improve clinical outcomes for people,”

So; what is the mode of action of Lipoic acid?

Why might it be working so well in MS, and where can you get hold of higher doses?

Lipoic acid is an anti-oxidant, meaning that it helps to protect cells, including those in the brain, against damage from ‘oxidants’, or ‘free radicals’ which are unstable, oxygen-containing molecules, that damage other cells to protect themselves. Free radicals are both produced in the body as a result of metabolism, energy creation and, importantly, inflammation, and also come from environmental factors, such as air pollution, radiation, UV light and cigarette smoke. Anti-oxidants can help to fend off viruses and microbes, but an imbalance, with too many anti-oxidants, has been linked to the development of more than 50 diseases, the most commonly discussed being heart disease and cancer.

eat-a-rainbow

In food, antioxidants are present in various degrees in all plant-based food; a 2010 study analysing the anti-oxidant content of over 31,000 foodstuffs begins  ‘A plant-based diet protects against chronic oxidative stress-related diseases’

and goes on to report a                                                                                  ‘several thousand-fold differences in antioxidant content of foods. Spices, herbs and supplements include the most antioxidant rich products in our study, some exceptionally high. Berries, fruits, nuts, chocolate, vegetables and products thereof constitute common foods and beverages with high antioxidant values. 
spices

So daily diet, as always, is super important, and nothing can replicate the benefits of eating the nutrients from real, fresh food; in this case, berries, fruits, vegetables, herbs and spices. The range is as important as the quantity, so ‘Eat the Rainbow’

But if you want to replicate this study, where participants took 1,200mg of supplemental lipoic acid, you need to find a high dose ( and probably, reasonably priced) supplement. If money is no object, then it’s a good idea to spend more and buy from a reputable, high-end source. If, like me, you need to keep an eye on the pennies, then I’ve done a scout round for cheap, high dose, vegetarian.

I don’t have any vested interest in any supplement companies, and am not qualified to judge their products or to recommend supplements; you always need to take your own responsibility for your choices, based on your condition. However, lipoic acid seems to be a safe supplement.

A scout around the internet produced a few brands that make 600mg tablets, which would give a dose of 1,200mg with 2 tablets daily. I always go for a vegetarian friendly option, and came up with these via Amazon.co.uk

‘Doctor’s Best’ from i-herb, at £8.11 for 60 veggie capsules

and

‘Natrol’ timed release, via amazon, at £9.95 for 60 timed release veggie capsules

I am going to be protecting my brain, I hope you’ll protect yours!

Hope this helps!

all the best,

Miranda
 

 

 

 

 

Latest MS research – what I learned at ECTRIMS, part 2

xcel

Wow, what a full on 3 days for the brain! So inspiring to see a sea of research posters, a vast menu of presentations , and 8000 engaged delegates filling up on the latest research.

Bone marrow transplantation ( HSCT/stem cell) – is it a viable treatment for active relapsing remitting MS – debateimg_3970

Consensus was: safety is improving – from 2011 the mortality rate has been 0.3% rather than 1-2%. Due to impressive rates of NEDA ( no evidence of disease activity – relapses or on MRI) – 80% at 2 years and 70% at 4 years in one study;

Yes, but ONLY in cases of early/new, highly active/aggressive relapsing remitting MS, where person is young, still walking, and treatment with first & second line treatment have failed.

And now for something completely different, and please DO try this at home(!): Seriously, I will be

Lipoic acid for neuroprotection in secondary progressive multiple sclerosis: results of a randomised placebo-controlled pilot trial –  R.I. Spain (Portland, United States) lipoic-acid

This beautifully carried out RCT had people with progressive forms of MS taking 1,200mg of Lipoic Acid, a supplement often sold as an ‘anti-oxidant’, and also called ‘alpha-lipoic acid’ once a day. A control group took a placebo.

After 2 years, the group taking the lipoic acid had a whopping 66% less brain atrophy on MRI scan ( showing less loss of brain cells), taking them back to a normal rate of brain atrophy, and half the number of falls.

Love it when something so harmless is investigated properly and found effective. Especially good to have something positive for progressive MS!

Comparison of Beta Interferons, Fingolimon, Alemtuzemab (Lemtrada) and Natalizumab ( Tysabri)

showed that as we know, effectiveness in reducing relapses from lowest up goes: Interferons, then Fingolimod, then Alemtuzemab and Tysabri. The last 2 showed the same effectiveness in preventing relapses. Natalizumab also showed improvement in disability in the first year, but not after that. and as we now the side effect profile and the way you take it is very different. Tysabri also has a rebound effect if and when you stop taking it. 

Alemtuzemab

research was presented that showed this drug performing very well in ‘resetting’ the immune system. Around 60% of people did not need more than 2 infusions, and NEDA ( no evidence of disease activity) was very high., but only when used EARLY. Time to change from the ‘wait and see’ attitude? This is the push from leading MS experts. Maybe check in with the MS Brain Health campaign if your neurologist is dragging their feet.

Vitamin D vit D.jpg

very strong evidence coming through from numerous sources that notwithstanding previous medical controversies and uncertainties, all people with MS should be on high dose from diagnosis – 4-5000 IU daily at least, and testing ( backs up info already posted on this blog) MS Base ( a database with over 41,000 people with MS’s records) showed a clear seasonal peak in relapses around the world, at the end of winter; with a time lag, shorter in colder countries. Low vitamin D levels were the strongest risk for progression in another study, and added a further anti inflammatory effect to people already on a disease modifying treatment, in another.

One study found that  people with MS given 100,000 twice a month for 2 years had a 60% reduction in relapse rate, and a 78% reduction in new lesions, compared to placebo. Powerful stuff, hopefully enough to finally swing the doubters.

Siponimod for progressive MS

presented as promising new treatment but I missed that session so – investigate!

Scientific highlights presentation – was split into 3 sections ‘migration and CNS injury’, ‘Gut and Food’ and ‘remyelination and oligodendracytes’

At the end of the event, I was really surprised to see these slides in the highlights – I missed the full presentation but one slide went like this:

hb02Oxygen

MS from an energy perspective.

Q:Why are animals with experimental animal MS paralysed?

A: Axonal ( nerve) depolarisation ( can’t send messages)

Q Why are axons depolarised?

A: Hypoxia ( lack of oxygen)

Q: Why is the inflamed central nervous system hypoxic?

A: Reduced blood flow

Q Why is blood flow reduced?

A: Currently unclear , CNS specific ( ie we don’t know, but it’s just the central nervous system.)

Went on to describe how animals with this experimental model of MS respond very well to hyperbaric oxygen: Oxygen therapy reduces pattern 3 demyelination.

So maybe we will see some new research showing usefulness of hyperbaric oxygen? If you can access it, I always say that it’s worth trying, and observe the effects on yourself.

Diet and Gut in MS

Feels like finally, the importance of aspects of diet is being addressed and listened to in MS research. In fact all present were enjoined Not to ignore environmental factors. Hurrah! a strike for logical thinking!

This was a feature of quite a lot of research at ECTRIMS. Lots of research on the role of the Biome ( bacteria in the gut) and how it affects MS. Interesting, exciting, but we still haven’t nailed practical application yet, so best bet is Take a daily probiotic capsule or powder, with as many different strains in as possible. And do these things, discussed previously.

Being overweight was identified as a serious risk factor for both developing, and worsening with MS. If you’ve got pounds to lose, check out the excellent ‘Fast Diet/ 5:2 diet’, showcased by Micheal Moseley on the BBC -https://thefastdiet.co.uk/ fasting also has benefits for inflammatory conditions.

Salt:  

salt stored in the skin was posed as a driver for auto-immune neuroinflammation in one paper. People with MS were found to have higher levels of salt in the skin….so that too… we could all cut down our salt – most is found in processed foods… and as you do it, your tastebuds acclimatise so it won’t mean you won’t taste your food.

Ending on a high

Conference ended on a high note, celebrating the huge progress that has been made in preventing disability – progress that started even before the availability of the disease modifying drugs, but has in recent years added a further 15 years of non-disabled life to the average MS-er, and is still making leaps and bounds.

I hope I’ve made an accurate summary of the sessions that I attended – mistakes are possible, and they will be all  mine. If you spot one, please let me know!

That’s all for now, til the next time!

miranda

 

 

 

 

What I learned at ECTRIMS: part 1

Hellectrims-webo from the 32nd congress of ECTRIMS, & the 21st conference of Rehabilitation in MS.

 

 

ECTRIMS is ‘ Europe’s and the world’s largest professional organisation dedicated to the understanding and treatment of multiple scelrosis’

With over 8000 delegates, all specialising, of with a special interest, in MS, it’s a privilege to attend! Loads of lectures run concurrently, so you can never attend everything. And the really science-y lectures, that are not yet going to make a practical difference to my patients, tend to go over my head a bit. Or a lot, depending! So here’s a digest of what I’ve learned so far, that has a practical application for people with MS!

The intro – X. Montalban (Spain)ectrims

Good to hear the current aims:

  • Evolving the Diagnosis of MS, so it can be made more quickly, but still be accurate. ( did you know there are 100 other conditions that can cause MS -like symptoms?)
  • getting better at Prognosis – working out who is likely to develop definite MS, and who with MS is most at risk of becoming disabled
  • in order to Personalise treatment – this means ” the right drug, at the right time, for the right person. And, at the right price.” Moving away from ‘first-line’ and ‘second-line’ treatments, to personalised treatments. Did you know that people treated with a disease modifying treatment before the second relapse developed less disability?

This leads into a presentation I saw in the break:

Brain Health – G. Giovanonni (UK)

This is a campaign led by Gavin Giovanonni of Bart’s ( UCL) hospital, London, and an international steering group of MS experts, with funding from some of the major disease modifying therapy (DMT) manufacturers.

The focus was on healthcare professionals, to improve services for people with MS, with, again, speedier diagnosis, prompt treatment, adequate follow up to find out if treatment is working, to allow an alternative or more aggressive treatment if the original one is not having a good enough effect, and certain standards of MS care – eg – noone with MS should get a pressure sore in your area of care etc.

People with MS can get involved with this project, and download the guide  to help get what you need from your neuro services. It also strongly recommends the lifestyle measures to keep your brain healthy that have the most robust clinical evidence in MS to satisfy the health service, like:

  • Exercisebrain-health
  • not smoking
  • not being oeverweight
  • not using too much alchohol
  • exercising your brain
  • continuing with prescribed medical treatment

You know that I believe in doing even more!

http://www.msbrainhealth.org/

 

Rehabilitation strategies – what works? – J. Freeman (UK)

img_3957This presentation was kind of frustrating. Only because we all know physios, OTs, psychologists, physical therapists who do great work that makes a big difference to people with MS’s health and lives. But because we’re not organised or funded to perform large scale randomised controlled trials ( as drugs are), most of the studies done aren’t ‘robust’ enough to prove the effects. This is a problem in and with the evidence based medicine approach – it has a tendency to turn all medicine into pharmaceutical medicine.

The interventions whose evidence is robust enough are:

  • Exercise ( this is coming up time and time again! Did you know that exercise has recently been found to be not just good for you in all the ways we already know, but actively anti-inflammatory?)
  • Endurance training,  and
  • Supported treadmill walking ( probably not massively better than other interventions, just done good research, possibly due to industry funding)

Improving mobility – D. Centonze ( Italy)img_3963

An extremely scientific presentation, suggesting that mobility could be preserved by measures that help to restore excitability to the nerve connections; ‘long term potentation’ and ‘synaptic plasticity’

At this point I really wished that the organisers would round up their presenters and give them presentation skills; however, what I THINK he said was:

Certain interventions can restore excitability, and thus improve mobility. And these are:

  • Exercise ( yes, exercise again!)
  • SSRI antidepressants (I’d have to know a lot more about that before recommending this. Like, is this all theoretical or have they conducted studies to show this effect??
  • Cannabinoids (Likewise)
  • or drugs that use these pathways for their effect
  • Electrical stimulation (because it activates cannabinoid and dopamine receptors)
  • And disease modifying therapy, because it helps to prevent inflammation, which is harmful

Treating MS bladder dysfunction – J. Panicker (UK)img_3967

Nothing new for me as an MS Nurse here; I’ll do a blog on the bladder; but confirmed the point I made earlier in this post about alternatives to anticholinergics that cause cognitive problems, and nice to see it being discussed. Add to that: Darifenacin or Tropsium if you can’t get Mirabegron.

Chasing the driver of fatigue in MS – V.Biberacher (Denmark)

Now this was really interesting. Why people get such fatigue in MS has always been a big question, and one that there are a lot of theories about. These investigators wanted to see
whether it was more associated with damage and lesion load in the brain, which can be measured by MRI scanning, or by inflammation, which can be measured by inflammatory markers in the cerebrospinal fluid ( CSF ) taken by lumbar puncture.

What they found, was that there was no significant relationship between damage and lesion load in the brain, but there was a significant relationship between inflammatory markers in the CSF. This suggests that inflammation, rather than structural damage, is responsible for fatigue in MS.

The take-home from this is that there are many ways to help reduce inflammation in your body – both your drug treatment, and lifestyle measures – eating an anti-inflammatory diet, getting good rest and sleep, becoming more resilient to stress, exercising, sunshine, vitamin D…

Dual lead deep brain stimulation for tremor – S. Oliveria (USA)

Study showing good effects on refractory ( ie won’t respond to any treatment/ drugs) tremor, in a small group of 11 people. 8 (73%) showed benefit at 6 months. 2 did not benefit; they had ataxia ( like clumsiness) rather than tremor. One got infected and had to have the leads removed. Kind of let down by the fact that they used a scale to show effectiveness, which didn’t show the actual result for the person’s functional improvement. So worth finding out about, but not a sure thing until we hear what the results of treatment for the actual people were. Grr!

Hot topic – bone marrow transplantation is a justifiable treatment for active relapsing remitting MS

Now I’m getting too hungry to report on this debate about stem cell /bone marrow

img_3972

When you want to be in two places at once….

 But I’ll try to finish this off tomorrow!

All the very best!

Miranda

 

 

Natural treatments for MS spasms

Natural treatments for spasm in MS

 

 

 

 

 

 

 

 

I often get asked about whether there is anything else apart from muscle relaxantmedication that can be done from MS spasms and stiffness, or spasticity.

Well, yes there is! But first, check you know all the basics about trigger factors, exercise, physio, and medication options – you can see that here:

standard advice on muscle spasm

Now let’s get onto the natural options.

1) Exercise. Think of this as a preventative. Specific evidence that exercise is good for spasms is scant, mainly because most studies are small and all look at different things – most physios are too busy treating their patients to be immersed in the world of large scale randomised controlled trials! However, there’s good evidence that exercise in MS helps mobility, strength, fitness and mood, and some evidence that regular movement exercise reduces spasms.

I have met people with MS with mild spasms,  who report that on the days that they exercise, they don’t get spasms, and they days that they don’t; they do!

2) Magnesium  can be effective as a relaxant in the nervous system, and so assist with reducing spasm and nerve pain. The recommended highest dose for daily use is 350mg;  there have not been any dangers reported in taking more  until you reach 5000mg and more, but it is possible to overdo.

 

I found one case study on PubMed documenting a markedly succesful case study of magnesium for MS spasm, the other evidence is ‘anecdotal’ – ie, from peoples’ experience.

For fast acting effect, magnesium citrate dissolved in water can sometimes do the job. Some people with MS report good results by using magnesium oil rubbed into the skin. Magnesium oil ( which is not in fact an oil, but magnesium chloride flakes mixed with water) is absorbed more efficiently than oral magnesium, and can be applied directly to the area affected. It’s generally left on for some time, then wiped or washed off.

Safety and drug interactions:

Risk of magnesium toxicity is usually related to severe renal insufficiency—when the kidney loses the ability to remove excess magnesium.

Magnesium toxicity can occur in people with hypothyroidism, those using magnesium-containing medications such as antacids, laxatives, cathartics, and in those with certain types of gastrointestinal disorders, such as colitis, gastroenteritis, and gastric dilation, which may cause an increased absorption of magnesium.

Oral magnesium may reduce the absorption of Gabapentin ( Neurontin) by up to 24%; another reason to try transdermal ( through the skin – oil/spray/cream) application.

Other drugs that may be affected by taking magnesium are listed on this info sheet from

https://ods.od.nih.gov/factsheets/Magnesium-HealthProfessional/

And some more info on magnesium is here: http://articles.mercola.com/sites/articles/archive/2012/12/17/magnesium-benefits.aspx

 

Case study:  David has had MS for many years, and uses an electric wheelchair to get around, both in and outdoors. He works almost full time as a professional photographer. In November 2015, he came to see me in clinic, because leg spasms had started to cause a problem when transferring – it was vital that we sorted this out in order for him to continue to live independently and alone.

We discussed increasing baclofen, but previous attempts had caused a lot of sedation. We discussed the use of tizanidine, but David was interested in whether any natural alternatives could be tried first, before requesting a prescription. We discussed magnesium, and he decided to try using magnesium, and after a bit of research, chose Magnesium 375mg with vitamin B complex, and also started taking Co-enzyme Q10 200mg tablets, three times a day, all of which he got from Healthspan. (Nb. 3 x a day is higher than the ‘recommended daily dose’).

A week or so later, he was noticing an improvement ; he reported that the nuisance leg spasm on standing had gone, and he was also seeing some other improvements.

This is his email:

As requested, here are details of the dose I am taking. I have attached scans of the backs of both packets, so you can see the full contents of each.

Currently, I take one Co Q10 and one magnesium tablet with my breakfast around 8.30am
I take another one of each with dinner at about 6pm.
Every other day, I take a third magnesium tablet at about 9.45pm, just prior to going to bed at 10.30ish.
The effects are most noticeable on the days that I take the third tablet, and the following morning.

Once in bed, I am able to straighten my leg easily, fully and without pain or discomfort.
I sleep better and am not disturbed by my leg spasming during the night.
In the morning, I find it easier to stand up and I can straighten my leg and put my weight on it within a few seconds, as opposed to the 20 or so minutes
that it was taking me before I started the supplements.

When in the kitchen, I find I can balance on both legs for a few moments and have a feeling of “feedback” or connectivity from my calf and lower leg
muscles. Previously, I would always have to have at least one hand on a counter to support myself. Without it, I would slowly lean away from the vertical
without realising and would have to hurriedly catch myself as I started to overbalance.
Over the last three years, I found it increasingly difficult to get out of an armchair and had bought a rising chair. Even with that, I was struggling to stand up,
sometimes needing three or four attempts to stand. Since taking the supplements, I can stand with the chair in the normal seated position.
I also find that I have less urinary urgency, and am able to control my bladder long enough to reach the toilet. (A big improvement, and a great relief!)

Possibly, being able to “feel” my lower leg muscles again is the biggest improvement, even if I cannot persuade them to move when I would like them to.
Best wishes,

David

 

A few weeks later, I saw him in clinic again, where he showed me that he is now able to stand and balance for a few seconds, just 2-3, for the first time in a very long time – which is when I took his picture!natural treatments for MS spasms I encouraged him to consolidate his benefits by working hard in physio, and asked to be kept up to date on any further improvements.

Since then, David has shared his experience with quite a few other people, who I have also heard promising reports from for spasm. I called him today, to see how things were going. He’s retained the benefits, but reduced the dose down to 2 a day rather than 3, as his urine became flourescent yellow. This is actually a sign of excess B vitamins being excreted ( which is also safe) – David thinks that he may well have had a deficiency initially, and is now replete. He’s: using a power-assist exercise bike to keep flexible, finds his right ankle is longer stuck at 90 degrees, having physio once a fortnight,  and can now stand quite well for 15-20 seconds, possibly more – he hasn’t checked!

Thanks, David for sharing your experience. Just because something is ‘natural’, doesn’t mean that it’s wishy washy; people are advised not to take magnesium with muscle relaxant tablets –  but that’s because it enhances their relaxant effect, which is the aim in this case. Natural also doesn’t necessarily mean safe; you should check you don’t have any contra-indicated conditions or medications before starting any supplement regime., and stick to the recommended dose, as supplements can cause harm and damage in high doses.

3) CBD oil. We’ve known for a long time that cannabis can be effective in reducing muscle spasm in MS, and pain in many conditions, but the fact that it’s an illegal drug, and that the medication made from it, Sativex, is so expensive that most health trusts won’t fund prescriptions, has created barriers to its use.

Now, there’s a completely legal alternative, available widely, for example on Amazon, which is CBD oil. This is one of the active constituents of cannabis, but does not contain the THC which makes people feel high. It’s available in liquid form from health food stores, and amazon etc, and can be taken orally by using just one drop under the tongue at first, or vaped with an e-cigarette.

Case study: Alex

Alex scott

 

 

Alex is 37, and was diagnosed with secondary progressive MS in 2012 – and then in  2014 he also broke his back. He was struggling to find any treatment without unacceptable side-effects for whole-body extensor spasms, jerking clonic spasms in his legs that were both painful and wearing, and severe back pain. As a father, he didn’t want to use cannabis, due to the illegality, and decided to try CBD oil in an e-cigarette/vape. He popped in to update me yesterday, and I was happy to hear that:

a) It has really helped. It’s not completely taken the spasms away, but reduced, far less painful and more manageable, especially the extensor spasm. He takes it in the evening only, and it seems to carry through until about midday the next day.

b) It’s quite strong, and has a sedating effect, but not as bad as, for instance, Tramadol, and does not affect thought processes.

c)He advises taking just 1 or 2 puffs and leaving it for 15 minutes to see the effects, and if you use an e-cigarette anyway, use a dedicated chamber for the CBD oil.

Both APS machines

4) Electrotherapies

There is some good quality evidence that TENS can be useful in reducing spasticity – Spasticity is the term that covers the whole clinical spectrum, from shortened, contracted muscles at the worst end, to the occasional spasm, /cramp at the other. It was more effective when used in conjunction with an exercise program than when used alone. I haven’t met anyone who has used TENS for spasms, but we have had some people at the MS Therapy Centre where I work who’ve been using APS Therapy  for pain, who have also reported a reduction in spasms. We are now beginning to expand our trial and therapy to include spasm as an indication for treatment.

 

new era5) Homeopathic tissue salts

One of my patients swears by New Era homeopathic remedy for ‘Fibrositis muscular pain’, which makes sense as the ingredients, in miniscule doses, include magnesium and potassium. This is safe to try, whatever medication you may be on.

 

 

 

So, lots to try, and if you have any more suggestions, please let me know.

all the best, and happy Spring,  🙂

Miranda