APS Therapy and MS pain

As an MS specialist nurse, I have always been aware of how much pain can be a problem in MS.  The big one is ‘neuropathic’, or unpleasant burning, tingling or shooting pains that are the result of inflammation, or scarring in the nervous system. ‘Normal’, or ‘nociceptive’ type pain in MS can typically include cramping muscle spasm, pain in stiff or very tired muscles, or the sorts of back or joint pains that can be caused by by being less mobile, or putting a strain on certain joints. Because the medications used, especially for neuropathic pain, can cause very problematic side-effects, including increased fatigue, weight gain, cognitive impairment, co-ordination problems and mood problems, I have always been on the lookout for new, natural, or left-field treatments.

I heard about APS Therapy when my friend, and lead for the NHS pain management team in Hull, called to say that I might be interested in a training they were having.

They had heard about some work being done in a hospice outpatient setting, by a palliative care consultant, ( Dr. Lia Van der Plaat, second from the right) which had managed to alleviate pain in some people, including some people with MS, with otherwise intractable pain.

This led to the team applying for and winning a commissioning prize to run a pilot study in people with MS, and people with rheumatoid arthritis.

header-grunenthal-aps-980x360-980x360

 

And now Maurice ( on the left) was coming to the UK to teach the team how to use their new machines. Did I want to attend? Of course I did!

 

Having had our training from Maurice, I was all fired up to get going; Dr Lia kindly agreed to present her findings to my team at the Beds and Northants MS Therapy centre, my boss proactively responded and got funding for our first APS Therapy machine, and off we went with our first users! We meticulously kept data on pain levels before and after a course of treatment, and quite soon the clinic was very popular, running at full capacity and needing  second machine.

It actually took a year before the Hull team were able to start their study, and by this time, we were able to share a lot of information in order to help them design their study. We had noticed that APS Therapy users often reported other benefits as well as pain relief, most commonly, improvements to energy, sleep and wellbeing, and recommended that they also keep outcomes for these.

Our clinic has now been running for  5 years, now using 4 APS Therapy clinic machines, and one home-use rental machine, and is very busy every weekday, with lots of really happy stories of improved pain and symptoms, and less use of medication.

 

 

Given that the APS has:
  • reduced my fatigue
  • Allowed me to reduce my intake of pregabalin
  • allowed me to come off the voltarol altogether,

I think it is a no-brainer that I should continue!    – Meryl Lovatt, Northamptonshire.

 

What is an APS Therapy machine?

mk4apparaat

APS stands for action potential simulation. An APS Therapy machine sends a copies of the action potential, or nerve signal, through the body, in between two sets of electrodes on the skin.

What are action potentials?

Action potentials are the tiny waves of electricity that pass down nerves and other cells, conducting the nerve signal and stimulating cellular functions.  Action potential simulation therapy machines send a copy of this wave, or ‘wave form’ , and also stimulate the body’s own action potentials, between electrodes on to the skin. This results in better communication between cells, improved removal of the waste products of inflammation, and increased production of the hormone melatonin, pain releiving neuro-transmitter leukine encephalin and the energy carrying molecule, adensoine triphosphate, or ATP.

 

What are the benefits?

The results to the user can include:

  • reduction in, or sometimes complete relief of pain,
  • enhanced energy/reduced fatigue,
  • enhanced recovery from injury,
  • faster recovery from exercise, and in many cases,
  • improvement to sleep quality and quantity.

 

 

 

So what were the results with our patients?

In Bedford, we have been running our clinic now for over 5 years, but at the 2 year point, we compiled and analysed the outcome measurements, and were able to show a statistically significant reduction in pain in our users, in a paper and also clinical posters, which were exhibited at a number of international MS conferences in 2016.

Poster Action Potential Simulation Therapy for pain in people with MS, report on a two year pilot study (3) (1) (1)

 

 

In the first 2 years we treated 60 people with a 6 week course of APS Therapy 2-3 x a week, for pain.

(We planned for 3 x a week, but in reality this was often 2) We found that 78% of those people had a reduction in pain; 23% to pain free.

The average reduction in pain was 3.22 for ‘usual’ pain, and 4.78 for ‘worst’ pain on the

10 point ‘Visual Analogue Scale’  (VAS)

In practice, there was a great variety, from no change, to dramatic drops from high pain levels to pain free, as you can see on the following charts. This is joint pain and injury at ‘usual level’ ( dark is before a course of treatment, light is after)

Joint pain and injury treated with APS Therapy

And here at ‘worst level’

Joint pain and injury, worst, treated with APS Therapy

Our biggest group was ‘neuropathic pain in feet and legs’:

Average VAS (0-10 scale) pre: 6.06                 Average post: 2.65

 

And here is the same pain at ‘worst’ levels:

 

Average VAS Pre: 8.3                                                 Post: 3.6

 

The other pain groups were ‘other neuropathic pain’, ‘joint pain or injury’, ‘back pain’ , ‘headaches’ and ‘other nociceptive pains’; all of these groups had an overall reduction in pain; the greatest was for ‘joint pain and injury’.

We found that whilst joint pain, musculoskeletal pain and injury sometimes needed only a short course of treatment to be resolved, neuropathic pain in MS is very often helped, but if it is long term, is likely to need maintenance after the first 6 weeks, of once a week treatment, which for most people, is enough.

In general, people were extremely happy with the treatment. 33 of these first 60 people reduced or discontinued medication as a direct result, which also added to their wellbeing.

We haven’t stopped keeping data, just haven’t stopped recently to collate it! One of the most enjoyable things about being involved in running an APS Therapy clinic at work, is hearing about people with MS  reporting not just pain relief, but many other benefits, and the positive impact this has had on their quality of life.

We’ve had reports of reduction in spasms, elevation in mood, improvement to sleep quality, cessation of recurrent UTIs when on 3 x week, disappearance of fatty/benign lumps, improvements to constipation, hormonal balance, and have just had some really big breakthroughs with trigeminal neuralgia.

The most common of the ‘other benefits’ have been energy improvement/fatigue reduction, and because of this, our clinic is now open for people who want to try APS for these reasons, or to help after relapse, when recovery seems to have hit a plateau.

APS Therapy is not a cure for, nor does it have an effect on the course of MS, however, it is a very exciting treatment for some of the invisible, but also potentially disabling symptoms of the condition, especially as there is no risk, and is generally free of side-effects.

We are lucky to have had a wonderful team of volunteers in our APS Therapy clinic, led by our clinic manager, Heather, to teach and assist people, and in my private business I hire, sell and allow people to trial APS Therapy, teaching them how to use it over Skype, Facetime or Whatsapp videocalling.

Action Potential Simulation could be thought of as a ‘natural pain treatment’. It’s not just for people with MS, but it makes sense that people with MS respond particularly well to it, as the problems in MS are due to the inability of the body to conduct its action potentials down damaged nerves.

At www.painfreepotential.co.uk there are lots of words from people with MS, who have successfully used an APS Therapy machine to reduce pain, reduce spasms, come off medication in order to start families, boost themselves back after relapse and improve energy levels.

As well as MS, I also Suffer with Anklosing Spondylitis which gives me quite a lot of back pain. The MS itself was making me feel exceptionally tired & I was struggling with bad head aches & a recurring sinus issue.

A treatment plan was put together for me & within 2 weeks of starting the treatment I was no longer waking up every morning with bad headaches. My energy levels were greatly improved & my backache was reduced.

… using this machine in addition to leading a healthy lifestyle has helped me to stay active & continue to enjoy an active lifestyle. – Kat Miller, Bedfordshire.

 

A recent one that made me smile was from Nina Pearce, from Chelmsford, who said:

Alongside my role as clinical nurse specialist in MS,  I have now also taken on the training and distributorship for APS Therapy in the UK, calling my company ‘Painfree Potential’.  In this way I’ve been able to train 11 other MS Therapy centres around the country, who now also offer APS Therapy:  Leicestershire, Berkshire, Hertfordshire, Kent, Hampshire, Cardigan, Exeter, Manchester, Sutton and Croydon, Suffolk and the MS-UK Wellness centre in Colchester.

centres that use APS Therapy

 

It’s my aim to attract researchers to conduct large scale clinical research so that we can explore the possibilities of APS Therapy and make it more widely known about; in the meantime, this year, with supervision from the University of Bedfordshire, as part of an MSc by research, I aim to carry out a clinical trial on the effects of APS Therapy in people with MS, with MS Nurse colleagues in the NHS.

 

 

You can learn more about APS Therapy at http://www.painfreepotential.co.uk
email miranda@painfreepotential.co.uk,
or call 01908 799870 and I will endeavour to call you back within a few days.

 

 

 

 

 

Preventing the risks to a person with progressive MS of an acute hospital admission.

A Pathway.

For the past few months, we have been working on a ‘pathway’ to help protect people with progressive MS when they are admitted to hospital with an acute illness ( such as infection) . We know that when people with progressive MS have an unplanned hospital stay ( due to becoming unwell – obviously all problems are not caused by being in hospital ), they often take a step up in disability, and sometimes this can be permanent.

Once someone is in hospital, all kinds of helpful aids and routines, like their own electric wheelchair, intermittent catheters or bowel irrigation can be stripped away, causing problems and complications, but that shouldn’t be the case. Once a person is in bed, they are also at risk of the complications of immobility, such as increased spasticity, pressure areas and constipation.

We based our work on issues and stories that came from people with progressive MS, with a view to helping to improve education and finally, care, and with a final aim to help people get home again as safely, and as quickly as possible.

We have created a ‘pathway’ on one A4 sheet, which can be adapted for use in any locality, to be laminated and kept on the ward, and act as a prompt for the key actions that should be taken when a person with progressive MS is admitted to hospital. If these actions are taken, then the hospital stay itself should not be contributing to any worsening, and should be able to play its therapeutic part.

This is the Pathway:

Pathway for progressive MS in acute admission

And this is the poster which both introduces and shows the pathway, with references.

Progressive MS Poster

Our aim is to introduce this into our local hospital along with some training, to raise awareness for front line staff in the needs of a person with progressive or advanced MS.

C53CC87D-2E6D-4987-8ABD-FED2AE6D724D367B97D4-5B98-4CC5-8EF9-A7C378A1E4D9

 

 

 

 

 

 

 

Yesterday,  I presented this at the MS Trust annual conference, and it was received very positively by the MS specialists attending; lots came to the poster display to take away a paper copy. It was great to get positive feedback from colleagues, and also from Stuart Nixon MBE, MS ambassador and his wife, who pointed out immediate tweaks we need to make ( like ensuring we consistently use the word Person rather than Patient – good call!)

This pathway has been part of a wider project undertaken by the Beds and Northants MS Therapy Centre, funded by Central Bedfordshire Council, to improve quality of life for people with long term conditions. We are also running 3 hour interactive sessions for both family and professional carers, ‘Caring for the Person with Advanced MS’, which have been very warmly received and positively reviewed. We intend to develop this training for hospital staff, to go along with the launch of the pathway.

This is a work in progress so if you have suggestions for improvement, please get in touch! msnursemiranda.olding@gmail.com. We also had assistance from Sanofi Genzyme with putting the Pathway into VISIO format, so Thankyou to you guys and hope you like what we’re doing with it!

All the best, Miranda ( Olding)  and Emma (Matthews)

 

 

 

 

 

Sex and MS

Just as in anyone’s life, sex with MS can be fun, intense, routine, boring, passionate, flirty, dirty, easy, comforting, fraught with difficulties, or all of the above!

Sexuality and sensuality is an integral part of being human and, depending on the individuals involved, has varying degrees of importance at different times in a relationship.

For this article, I’m leaning heavily on an excellent publication for healthcare professionals, ‘MS, Sex, Sexuality and Intimacy’; link at the end of the article, and the fantastic work of MS Nurses Denise Middleton & Lesley Catterall.

Screenshot 2018-11-03 14.37.09denise & lesely (2)

 

The chance to discuss issues with sexual function is an important part of your MS Nurse appointment, and if you have a concern, always raise the subject.

Problems with sex that can affect people with MS are divided into:

Primary problems, which occur as a direct result of MS lesions, and can include numbess in the genital area, and problems with orgasm, erections, or vaginal lubrication.

First of all, both partners should understand that mutually expressing sensuality, through loving touch, with affection and humour, can still be deeply rewarding, even if  sex does not necessarily end in orgasm.

Then, it’s worth checking that problems aren’t being caused by one of the commonly used in MS medications that can cause problems in libido, erection/lubrication, or achieving orgasm, which include:

medicationAmitriptyline, Carbamazepine, Gabapentin, Pregabalin, and Baclofen as well as opiod painkillers, antidepressants, blood pressure drugs, statins, and cannabis.

This is not an exhaustive list! If therefore, you can find a way to decrease the need for these medications, that’s ideal.

For problems with erection, men with MS qualify for the medications Viagra, Cialis, including the once a day Cialis that allows for a bit more spontaneity, Levitra and Spedra on the NHS, and if they are not suitable, ask to be referred to  the local erectile dysfunction clinic, where different options like implants, creams, injections, and vacuum pumps can be discussed. Pumps can also be bought privately, and work well for many men.

To help achieve orgasm, and for numbness, exploring the use of sex toys can be helpful. These include vibrators for both sexes and different sexual areas, and vibrating rings; ‘sleeves’,pulse_iii_duo_top_2

or artificial vaginas, which can also be during foreplay instead of hands for stimulation, and stimulant lubricants (‘play gels’) which can strengthen sensation, amongst others, and are available via tasteful online shops like lovehoney.co.uk, beecourse.com and emotionalbliss.co.uk.

 

Photo from Spokz.com

 

 

There is another product, the Eros Therapy, which has been marketed as a medical device, rathereros than a sex toy, whose aim is to improve blood flow to the clitoris, using a little suction cup device, making orgasm more likely! In a study of (only 15) women diagnosed with sexual dysfunction, more than 80% reported increased sexual satisfaction, and 55% achieved orgasm; they also reported more genital sensation and vaginal lubrication, when using Eros.

 

For problems with ejaculation, there are no specifically licensed medications, however,  in 158 men with spinal injuries; 65% did achieve ejaculation when taking midodrine.

champagne

The NHS choices website mentions that Baclofen can cause delayed ejaculation, and that Amantadine, bupoprion and yohimbine are suggested are suggested when this problem is caused by SSRIs. Pseudoephedrine has also shown promise but hasn’t been licensed for this use. Interestingly, Amantadine is also used for fatigue in MS.

For problems with lubrication there are a variety of products available to help , such as Replens, SYLK, Yes VM.

sylkreplensimages

Secondary sexual problems describe when MS symptoms interfere with sex; for instance, bladder, pain, spasticity or fatigue.

These problems can often be got round with a bit of planning. The most common problem I hear in clinic from people with relapsing remitting MS is fatigue. When tired, libido can be the first thing to go, but where sex is important to your partner, try to plan for it: is it possible to have morning sex, at least on the weekends, a nap in the day, or a super early night together..?

dreamstime_s_31163319 couple

With pain and spasm, timing medications to get the most relief at the right time, taking an extra (agreed with your prescriber) muscle relaxant, or using CBD oil for instance, can help.

If you have more advanced MS, with disability, thinking about positioning may be important. You may want to use pillows to raise hips or get comfy. Spokz.co.uk is a disability equipment site that includes sex products, including a gripper, for when hand function is an issue, and sex furniture – swings and swinging chairs, that sound exotic, but take the effort out of sexual moves, and can make positioning easier.

 

If you have a catheter, adding a flipflow valve means the bag can be removed, and this can be taped out of the way underneath nice underwear. Absorbant bed pads can be placed underneath if you’re worried about bypassing.

Remember, not all sexual difficulties are caused by MS. The http://www.nhs.uk website gives broad pointers to other causes, and http://www.sexualadviceassociation.co.uk offers more detailed advice,  your GP may be able to refer you to more specific services, and sexual and relationship counselling is available privately.

Tertiary sexual problems refers to cultural, emotional, psychological and social aspects; for example, inhibitions due to beliefs, or losing confidence.

Keeping the channels of communication open is probably the most important factor here, and has a direct effect both on successful sex, and on maintaining intimacy. After spinal injury, the important factors in maintaining a positive and satisfying sexual relationship were found to be “emotional factors such as honesty, trust,
closeness, mutual respect, communication, caring and appreciation”

A fulfilling sexual relationship is about more than intercourse or orgasms, and a fulfilling relationship is about more than sex. There are many couples whose relationship does not involve sex at all, but who maintain a high level of intimacy, with warmth, and fulfilment on both sides, and many others whose sexual relationship involves creative solutions and may not culminate for both partners in orgasm, but is still a deeply enjoyable expression of love and care for each other and each other’s needs. 

 

 

 

 

The document below has a full list of resources for support with sexual and relationship difficulties including the excellent booklets for both sexes by the MS Trust, downloadable from www.mstrust.org.uk; sexual and relationship counselling, books, films and organisations.

https://www.mstrust.org.uk/sites/default/files/MS%20%26%20Sex%20Guide%20INTERACTIVE.pdf

Happy bonking!  Miranda. Blog: ‘MS Nurse with a holistic approach – useful things I’ve learned’ http://www.mirandasmsblog.com

 

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

 

 

Assistive technology for loss of hand function

The hardest part of being an MS Nurse, for me, (and I know I have Nothing to grumble about!!)  is when someone with advanced MS tells me that  they are losing hand function.

I’ve compiled a list of useful resources to help live life as fully and independently as possible, in this situation. Here’s the list so far, but it’s only a beginning, I’d like a more comprehensive resource so please do contribute the things that you know.

This is where technology is absolutely your friend.

I’m loving this round up of the best assistive tech for 2017 from the makers of TECLA: https://gettecla.com/blogs/news/the-best-wheelchair-tech-accessories-of-2018?customer_posted=true#contact_form

They also have useful blogs on choosing smartphones, DIY assistive tech and more; see https://gettecla.com/

1) Abilitynet are an excellent charity that provide information and even home visiting assistance to help people with disabilities get the most from their computer, tablet and smartphone, including using voice controls.

https://www.abilitynet.org.uk/homepage

The home visit service:

https://www.abilitynet.org.uk/at-home/IT-support-for-disabled-people

 

2) Environmental controls/Assistive technology (AT)

(AT) is any item, piece of equipment, software program, or product system that is used to increase, maintain, or improve the functional capabilities of persons with disabilities. Put simply, it allows you to control things around you – from doors and curtains to TV, phone, wheelchair and more, without the normal use of your hands.

Counties will vary, but in Bedfordshire, if only one item is requested, the community OT department sort it, but for more than one, you can request a referral to the Acquired Brain Injury (ABI) team, for a specialist assessment.

3) Another place you can learn about AT is http://www.livingmadeeasy.org.uk/ which has impartial advice and information  about daily living equipment, developed by the Disabled Living Foundation (DLF)Their AT advice is here:

http://www.livingmadeeasy.org.uk/telecare/environmental-controls-2393/

 

Sometimes, what you need, is absolutely bespoke to you. When that’s the case, the wonderful experts are the charity

 

4) Remap http://www.remap.org.uk/  Remap are

retired engineers work with disabled people to try to make things to solve their individual problems; my experience of them has been fantastic.

Photo courtesy of Remap.

 

5) Independent electric wheelchair control can still be possible for people who have completely lost hand function, using ‘sip and puff’ / ‘suck and blow’ , or ‘tongue drive technology. Discuss with wheelchair services. You can see an example of it here, but it’s just an example, I don’t particularly recommend or endorse it.

 

https://smilesmart-tech.com/assistive-technology-products/wheelchair-controls/suck-and-blow-switch/

6) Suck and blow/sip and puff technology can also be used to use a computer, turn pages, or other commands.

 

http://www.livingmadeeasy.org.uk/search.php?cx=005018225405928271468%3Appdewqx27cq&ie=UTF-8&q=suck+and+blow

7) Neater eater

This is a lovely piece of kit that has been around for a long time; like a robotic arm that can help people with limited hand function to eat independently; i also see that they have systems for drinking too.

http://www.neater.co.uk/


I have many patients who continue to lead rich, full and busy lives, even with minimal function and maximum disability, and that, I guess, is the power of the human spirit.

Emma ( my colleague and the other MS Nurse at the MS Therapy centre) has just recently been at ECTRIMS in Paris, and we are both going to be at the MS Trust Annual conference next week, so hope to report back soon,

All the very best!  Miranda

human spirit

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

UPDATE November 2018:

  1. Researcher believe that benefits are NOT all just about the lower cholesterol in the blood, but that there are other effects on the cells and the immune system
  2. The next phase of Statins research is recruiting, and to get involved, visit http://www.ms-stat2.info

It may be that this becomes the treatment for progressive MS of the future.

 

 

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