Pain in MS – treatment and managment options

From paracetomol to transcranial magnetic stimulation, everything I know so far about pain in MS.

I’m not going to pretend to know everything about this huge topic, but here is my best shot at present! I started putting the info together for a presentation for MS specialists, with anaesthetist Dr. Sharmila Khot, and then I carried on, to try to compile all I’ve learned into a blogpost. Referenced version available on request.

miranda olding pain lecture

Pain affects around 63% of people with MS. In a 2012 article about the types of pain in MS, the authors state ‘We can think of no other disease that can result in so manyk different types of pain.’

They list 9 types of pain in MS, as:

  • Muscle spasm – (like cramp)
  • Spasticity – (tight / stiff)
  • Musculo-skeletal – (back or joint problems, often from walking difficulties, or sitting)
  • Optic neuritis – (pain in the eye due to inflammation of the optic nerve)
  • Migraine – (in fact, unless linked to beta interferon or fingolimod, MS does not cause migraine, but headaches are more common in people with MS than in the general population)
  • Treatment related pain – (injectable DMTs/ side effects)
  • Neuropathic pain & ongoing extremity pain – (prickling, tingling or shooting stabbing pains, and pins & needles, burning/freezing, often worst in the feet)
  • Trigeminal neuralgia – (agonising bouts of facial pain)
  • L’Hermittes sign – (like an electric shock when bending the head forwards)

I’d like to add to the list, the pain of fatigued muscles.

In  nursing, we have a process, whose acronym is ADPIE.

woman in pink white floral apron smiling while holding a white creme food during daytime

Photo by Pixabay on Pexels.com

It stands for

  • Assess
  • Diagnose
  • Plan
  • Implement
  • Evaluate

This process needs to go on continually, when assessing and treating pain. The first two steps, assessment and diagnosis, are essential to plan and implement the right treatment, and for this, your description of how the pain feels and when it occurs are essential.

The two broadest categories are ‘nociceptive’ (or normal type pain, which is often musculoskeletal), and ‘neuropathic’, (or nerve pain). Many people with MS have a mixture of different types of pain.

pain face

NOCICEPTIVE PAIN

Nociceptive, or normal type pain, is most likely to be described as gnawing, throbbing, aching, cramping, or dull, and in the joints, or muscles.

This includes the pain cause by muscle spasm, stiffness, or spasticity, which needs to be addressed by treating that problem; see mstrust.org.uk/a-z/spasticity-and-spasms 

and Natural options for MS spasms are discussed here

Key interventions are muscle relaxants and physiotherapy.

Musculoskeletal pain is not caused by MS primarily, but it can be a secondary effect of effortful walking, using a stick, sitting for long periods, or becoming deconditioned, and cause, for instance, low back pain, shoulder pain, hip pain. Having high tone or stiffness in the muscles can contribute to this pain, so seeing one of your MS health professionals to work out how much this is contributing, and work out a treatment plan, can be helpful.

For musculoskeletal (MSK) pain, standard medical practice is exercise, physiotherapy, and painkillers.

physio therapy

A physiotherapist can both treat you, and advise on the best form of exercise. A good physiotherapist will also be able to detect specific painful problems that may have specific treatments. For example, Piriformis syndrome can happen to runners, but also to people who have to sit for long periods of time, so can affect wheelchair users. In Piriformis syndrome, the sciatic nerve is pinched by the small piriformis muscle in the buttock, causing horrible pain and discomfort in the buttock when sitting, and specific stretches  are recommended to release it.( Post to follow)

Exercise is a cornerstone in treating musculoskeletal pain, and the most recent findings in pain science suggest that in chronic pain, doing exercise, even when it is painful to do so, can reduce pain in the long term, by reducing ‘fear avoidance’ of movement and further worsening and de-conditioning; by de-sensitising chronic pain areas which have become over sensitised; and also by stimulating the circulation of lymph and oxygen, lowering inflammation. If you have physical barriers to exercise, consider adaptive equipment – electric bikes, power assisted exercise bikes, swimming with disabled access, GP exercise referral, or MS exercise classes.

body stretching yoga beauty

Photo by Roman Davayposmotrim on Pexels.com

Painkillers vary in different conditions, but generally follow the World Health Organisation ladder of analgesia.

This ladder was initially put together to help cancer pain, and there is now lot of debate about how useful, or harmful, it really is to use opioids in chronic pain.

Screenshot (6)


Using Opioids

There are concerns about the prescription of opioids for long term pain, due to the problems of side-effects, tolerance ( the body needing a higher and higher dose to be effective), dependence ( when the body only functions normally with the drug, and trying to cut down or withdraw from it causes unpleasant symptoms)  and risk of addiction. Guidance for healthcare professionals is here: https://www.rcoa.ac.uk/faculty-of-pain-medicine/opioids-aware.

In summary,

  • opioids are most useful for acute pain, and end of life ( cancer type) pain
  • For best results in chronic/persistent pain, they should be low dose, and used only intermittently, to prevent tolerance
  • Above a dose of 120mg a day of morphine, or equlivalent, there is no increased pain relief, but increased risks
  • If pain does not respond to opioids there is no benefit to taking them, and they should be stopped, but all tapering down and withdrawing needs close monitoring and support.

Gels and creams

applying body lotion care cosmetic product

Photo by Linda Prebreza on Pexels.com

Anti-inflammatories gels are also available, but remember that the doses count towards your daily allowance of the drug. The evidence for these is good in acute pain, but only minimal in long term pain.

Some people also find that over the counter heat rubs help; these work in a different way, as Counterirritants. Ingredients such as menthol, methylsalicylate (oil of evergreen), and camphor create a burning or cooling sensation that distracts your mind from the pain.

Salicylates. These same ingredients that give aspirin its pain-relieving quality are found in some creams. When absorbed into the skin, they may help with pain, particularly in joints.

There is less robust evidence for the above 2 topical applications.

Capsaicin cream  has good evidence to support its use, and can be prescribed for both joint and neuropathic pain. It’s made from chilli peppers, and burns when it goes on, but if persisted with over weeks, can provide relief by desensitising the nerves, and I’ve occasionally seen it work when other treatments have failed!


Complementary therapies

therapy

As well as standard treatments, many people with MSK pain benefit from complementary therapies, including, but not limited to, Acupuncture, Massage, Reflexology, Craniosacral, Osteopathy, Chiropractic, Bowen technique, Shiatsu and massage. The practice with the most published evidence, showing moderate but sustained benefit in one review of research, is acupuncture.

It’s worth knowing that there is a great deal of difference in the amount of training done by a traditional Chinese acupuncturist, who will have trained for many years, and the acupuncture you might receive as part of standard medical treatment, which may have been a very short course for doctors or physios.

Reflexology and acupressure work on the same principles, and acupressure is a technique you can do  on yourself at home.

point massage

Electrotherapies are also often used successfully, and include many types of device, either as part of physiotherapy treatment or privately bought home use machines, and there are varying degrees of evidence for efficacy of the different types. See Electrotherapies

Also see ‘For all types of persistent pain

NEUROPATHIC PAIN

blue metal tool

Photo by Killian Eon on Pexels.com

 

Neuropathic, or nerve pain is caused by ‘a lesion or disease affecting the somatosensory system.’ It is commonly described as burning, hot, icy cold, tingling, pins and needles, electric shocks, shooting or stabbing.

Neuropathic pain is a difficult pain to manage, especially as it can be worse with exercise, and normal painkillers aren’t effective.

Trigeminal neuralgia is a type of neuropathic pain that is treated differently from others.

dreamstime_s_115831632

It’s is an agonizing facial pain which come in bouts, but can develop into permanent pain. This requires Carbamazepine as a firstline, but with a specialist, other medications can be tried, and there are both non-invasive and surgical procedures available. See https://www.nhs.uk/conditions/trigeminal-neuralgia/

For the other neuropathic pains,

Firstline medications

that can be prescribed in primary care ( ie by/via your GP) are in the following table. NB. Side effects are only potential side effects. ‘Common’ means between 1 in 10 and 1 in 100 people are affected.

Medication & example brand name

Description, Dose, Side effects 

Only  the most common side effects are listed; before recommendation or prescription, read full list of possible side effects at https://bnf.nice.org.uk/

Gabapentin (Neurontin)

Description: Antiepileptic Dose: Initially 300 mg once daily on day 1, then 300 mg twice daily on day 2, then 300 mg 3 times a day on day 3, alternatively initially 300 mg 3 times a day on day 1, then increased in steps of 300 mg every 2–3 days in 3 divided doses, adjusted according to response; maximum 3.6 g per day.

Common side effects: Anxiety; appetite abnormal; arthralgia; asthenia; behaviour abnormal; confusion; constipation; cough; depression; diarrhoea;     dizziness; drowsiness; dry mouth; dysarthria; dyspnoea; emotional lability; flatulence; gait abnormal; gastrointestinal discomfort; headache; hypertension; increased risk of infection; insomnia; leucopenia; malaise; movement disorders; muscle complaints; nausea; nystagmus; oedema; pain; reflexes abnormal; seizure (in children); sensation abnormal; sexual dysfunction; skin reactions; thinking abnormal; tooth disorder; tremor; vasodilation; vertigo; visual impairment; vomiting

Pregabalin (Lyrica)

Description: Antiepileptic Dose: Initially 150 mg daily in 2–3 divided doses, then increased if necessary to 300 mg daily in 2–3 divided doses, dose to be increased after 3–7 days, then increased if necessary up to 600 mg daily in 2–3 divided doses, dose to be increased after 7 days.

Common side effects: Abdominal distension; appetite abnormal; asthenia; cervical spasm; concentration impaired; confusion; constipation; diarrhoea; dizziness; drowsiness;dry mouth; feeling abnormal; gait abnormal; gastrointestinal disorders; headache; increased risk of infection; joint disorders; memory loss; mood altered; movement disorders; muscle complaints; nausea; oedema; pain; sensation abnormal; sexual dysfunction; sleep disorders; speech impairment; vertigo; vision disorders; vomiting; weight changes

Amitriptyline ( Elavil)

Description: Anticholinergic Dose: Initially 10–25 mg daily, dose to be taken in the evening, then increased, if tolerated, in steps of 10–25 mg every 3–7 days in 1–2 divided doses; usual dose 25–75 mg daily, dose to be taken in the evening, doses above 100 mg should be used with caution (doses above 75 mg should be used with caution in the elderly and in patients with cardiovascular disease); maximum per dose 75 mg.

Common side effects: Anticholinergic syndrome; (agitated (hyperactive) delirium – typically including confusion, restlessness and picking at imaginary objects) drowsiness; QT interval prolongation ( heart rhythm)

Caution in: chronic constipation, urinary retention

Frequency not known includes: visual disorders, confusion, constipation, dizziness, impaired concentration, peripheral neuropathy, urinary retention, altered sensation and depression, all of which can be confused with symptoms of MS; anticholinergics are also associated with dementia in long term use ( over 2 years)

Duloxetine ( Cymbalta)

Description: serotonin and noradrenaline re-uptake inhibitors (SNRI)

Dose: Initially 30 mg once daily, increased if necessary to 60 mg once daily; maximum 120 mg per day.

Common side effects: Anxiety; appetite decreased; constipation; diarrhoea; dizziness; drowsiness; dry mouth; fall; fatigue; flushing; gastrointestinal discomfort; gastrointestinal disorders; headache; muscle complaints; nausea; pain; palpitations; paraesthesia; sexual dysfunction; skin reactions; sleep disorders; sweat changes; tinnitus; tremor; urinary disorders; vision disorders; vomiting; weight changes; yawning

 Capsaicin cream ( Axsain)

Description: plant alkaloids Dose: Apply 3–4 times a day for 8 weeks then review, dose to be applied sparingly, not more often than every 4 hours.

Common side effects: abnormal sensation.

Caution: avoid contact with eyes; avoid hot shower or bath just before or after application (burning sensation enhanced); avoid inhalation of vapours; not to be used under tight bandages

Tramadol (Zydol)

Description: Opioid Dose: For use as short term ‘rescue therapy ‘ only

Initially 50 mg, then, adjusted according to response; Usual maximum 400 mg/24 hours, or use modified release over 12 or 24 hours preparations

Common side effects: Arrhythmias; confusion; constipation; dizziness; drowsiness; dry mouth; euphoric mood; flushing; hallucination; headache; hyperhidrosis; hypotension (with high doses); miosis; nausea (more common on initiation); palpitations; respiratory depression (with high doses); skin reactions; urinary retention; vertigo; visual impairment; vomiting (more common on initiation); withdrawal syndrome

 

Secondline medications

Medication & Example brand name

Description, Dose, Side effects

Only  the most common side effects are listed; before recommendation or prescription, read full list of possible side effects at https://bnf.nice.org.uk/

High strength capsaicin patch (Qutenza)

Description: plant class alkaloids Dose 179mg patch

Common Side effects: sensation abnormal

Cautions: avoid contact with the face, scalp or in proximity to mucous membranes; avoid holding near eyes or mucous membranes; recent cardiovascular events; uncontrolled hypertension

Lidocaine patch (Versatis)

Description: local anaethetic Dose: Apply once daily for up to 12 hours, followed by a 12-hour plaster-free period; discontinue if no response after 4 weeks, to be applied to intact, dry, non-hairy, non-irritated skin, up to 3 plasters may be used to cover large areas; plasters may be cut.

Common side effects in intravenous use – as systemic absorption can follow topical administration, should be borne in mind:

anxiety; arrhythmias; atrioventricular block; cardiac arrest; circulatory collapse; confusion; dizziness; drowsiness; euphoric mood; headache; hypotension (may lead to cardiac arrest); loss of consciousness; methaemoglobinaemia; muscle twitching; myocardial contractility decreased; nausea; neurological effects; nystagmus; pain; psychosis; respiratory disorders; seizure; sensation abnormal; temperature sensation altered; tinnitus; tremor; vision blurred; vomiting

 

Venlafaxine (Effexor)

Description: SNRI Dose: initially 75 mg daily in 2 divided doses, then increased if necessary up to 375 mg daily, dose to be increased if necessary at intervals of at least 2 weeks, faster dose titration may be necessary in some patients; maximum 375 mg per day. Common Side effects: Anxiety; appetite decreased; arrhythmias; asthenia; chills; confusion; constipation; depersonalisation; diarrhoea; dizziness; dry mouth; dyspnoea; headache; hot flush; hypertension; menstrual cycle irregularities; movement disorders; muscle tone increased; mydriasis; nausea; palpitations; paraesthesia; sedation; sexual dysfunction; skin reactions; sleep disorders; sweat changes; taste altered; tinnitus; tremor; urinary disorders; vision disorders; vomiting; weight changes; yawning

Tapentadol (Palexia, Nucynta)

Description: Opioid with SNRI: Dose: Modified release:Initially 50 mg every 12 hours, adjusted according to response; maximum 500 mg per day Side effects: Anxiety; appetite decreased; asthenia; diarrhoea; feeling of body temperature change; gastrointestinal discomfort; muscle spasms; sleep disorders; tremor; for all opioids: Arrhythmias; confusion; constipation; dizziness; drowsiness; dry mouth; euphoric mood; flushing; hallucination; headache; hyperhidrosis;  hypotension (with high doses); miosis; nausea (more common on initiation); palpitations; respiratory depression (with high doses); skin reactions; urinary retention; vertigo; visual impairment; vomiting (more common on initiation); withdrawal syndrome

A non – opioid medication that can sometimes help persistent pain which does not respond to other medications, is Nefopam hydrochloride. Possible side effects include nausea, dizziness, lightheaded, nervousness, confusion, dry mouth, urinary retention.

Other medications that may be offered include stronger opioids, eg morphine, oxycodone, buprenorphine.  See using opioids for more information.

NHS guidelines state that these should only be prescribed in specialist centres, such as a pain clinic or neurology clinic. This is not necessarily because they are stronger, but generally because they are not licensed for the treatment of pain, but for other uses, and have less evidence for use in pain.

Secondline medications for neuropathic pain that can be prescribed via specialist clinic include, but are not limited to:

For pain that does not respond to standard treatment, ask to be referred to a pain clinic. These vary greatly around the country in terms of what they offer, but may offer acupuncture, psychological therapies, electrotherapies as well as medications and injections.

Pain clinics, also offer various types of injections for different pains, the ones most likely to be suitable in MS are

  • Nerve block injections for neuralgias

 

Thirdline interventions

  • Intravenous lidocaine (relief only tended to last for up to 28 days)
  • Intravenous ketamine

The evidence for these two treatments is not robust, and there are only a few centres that offer them, but I have met people for whom it has been the only thing that has helped them.

  • Deep Brain Stimulation. This invasive procedure involves stimulating a precise area of the brain using an electrode to modulate the central processing of pain signals.

This procedure is carried out on the NHS, but as there are serious and well-known risks, it is reserved for the most difficult pain conditions.

  • Spinal cord stimulation (SCS) SCS is an invasive procedure where a small electrical stimulator is placed on the spinal cord, to modify the perception of neuropathic and ischaemic pain.
spinal cord stimulation

picture: Boston Scientific

SCS is also available as a treatment for chronic neuropathic pain, both on the NHS and privately, but as it has a cost of around £10,000 per patient and a life of around 3-4 years, it is usually considered after standard treatments have failed. It works in the same way as a TENS machine, so ‘accommodation’, or the body becoming used to the current and needing a stronger stimulus, can be a problem over time.

Implanting of devices to relieve pain is known as neuromodulation, and techniques are evolving. Newer techniques include Dorsal root ganglion stimulation, dorsal root ganglion paddle stimulation, and high frequency spinal stimulation.

  • Transcranial Magnetic Stimulation (TMS)

TMS

Also known as repetitive, or rTMS, is a new, non-invasive treatment that involves having a magnetic pulse sent to the brain from a plastic-coated magnetic coil held against the head. At present it has only been licensed o the NHS for treatment of depression, but there is also evidence for its use in neuropathic pain. At present it is only available for pain on the NHS as part of research at one centre in the UK; the Walton centre in Liverpool

  • Transcranial direct current stimulation ( tDCS)

TdCStDCS is a non-invasive method of electrical stimulation of the brain using a weak direct current applied to the scalp through electrodes, using a portable, battery operated device. At present it is only available on the NHS for treatment of depression. However, there has been one study in 19 people with MS, which found a 37% decrease in pain over around 4 weeks. tDCS is available privately, and hand held devices are available for purchase. People have been excitedly using privately bought units to make themselves smarter, more alert, or game faster, but there is a possiblity that units could be used for pain control.

 

Safe non-pharmaceutical options for home use

Some people find that cooling strategies give temporary relief, including wearing ‘freezer socks’ ( socks that have been put in the freezer!) cooling garments, and cooling gels

For allodynia, (pain from something that does not normally cause pain, such as shoes, clothing or bedclothes touching the skin) wearing things that provide a continuous stimulus, such as gloves, tight lycra clothing, or lycra splinting /dynamic movement orthoses may help. A bed cradle  can be used to keep duvet/bedclothes off the feet, and sheepskin booties can relieve the weight of  feet rubbing on the mattress.

Dynamic-movement-orthoses-DMOrthotics3

dynamic movement orthoses


Electrotherapies are the only non-pharmaceutical options with published evidence of effectiveness in neuropathic MS pain. There is ‘very low quality’ evidence (small studies, lack of comparative data) for use of TENS in neuropathic pain in MS, and this definitely helps some people. A TENS device can be worn for long periods, with the unit clipped to a belt. There is as yet unpublished data on a micro-current electrotherapy, Action Potential Simulation, or APS Therapy. We have had a lot of success with this in the MS Therapy centre where I work, and it is now offered by 11 other MS centres around the UK, or can be used at home.

Although evidence is limited due to the lack of randomised controlled trials, there are many other mind-body therapies that are used by people with MS; the two that have been studied in most detail are acupuncture and mindfulness. See complementary therapies,  and ‘For all types of persistent pain’

Controversial / less safe / possibly pharmaceutical

Cannabis and cannabinoids

shallow focus photography of cannabis plant

Photo by Michael Fischer on Pexels.com

Cannabis is a naturally occurring drug made from parts of the cannabis plant. It contains many different compounds which are known as cannabinoids, the most widely studies are THC ( the part that makes people ‘high’) and CBD.

In the UK, cannabis is a controlled drug, Class B under the Misuse of Drugs Act 1971,  and currently assigned to Schedule 1, so it cannot be prescribed or held legally with a prescription. Changes to the law are expected, see https://www.mstrust.org.uk/news/views-and-comments/medicinal-cannabis-%E2%80%93-a-potted-guide

In the meantime, many people with MS do find cannabis useful, and use it in various ways, including growing it, making tinctures, vapes, and using it in foodstuffs. There are certain risks to mental and physical health, specifically for those who are younger than 25 years of age, might be pregnant, have cardiovascular disease, respiratory disease, a history of psychosis, or a substance use disorder.

Cannabinoid medication Sativex contains both THC and CBD and has been licensed for spasticity in the UK, but not pain. It is not prescribed in most parts of the UK on the NHS as it is not considered cost-effective. In Canada, it is also licensed for neuropathic pain in MS, as are other cannabis based medications ( nabilone, nabiximols)

CBD oilCBD oil, which is available from health food stores and online retailers, is made from cannabis but has had the THC removed. Unfortunately, only cannabis preparations with a high level of THC have been found to be effective for neuropathic pain in MS in clinical trials. People sourcing CBD oil should be aware of possible interactions with other drugs.


For all types of persistent pain

Modulating pain

Pain is a sensory and emotional experience, not always related to damage in any physical structure. It occurs in the brain, and not in the part of the body that hurts.

All pain can be ‘modulated’ – turned up or turned down, at different places along the path of the nerve, and emotions have been found to affect how strong the pain feels at different times. Your brain is only able to cope with a certain amount of information at one time, and this includes pain.

pain modulatedFactors that ‘wind up’ or heighten the pain response include ;

˜Hyper-vigilance – focussing on the pain

˜Fear

˜Anxiety

˜Stress

˜Previous negative experience

˜Beliefs about meaning of pain

˜Criticism – being criticised!

˜Boredom

˜Depression

Factors that ‘wind down’ or de-escalate the pain response include:

dreamstime_s_31163319 couple

○ Relaxation

○ Distraction, enjoyment

○ Meditation/ Mindfulness

○ Meaning

○ Social bonding/ interaction

In chronic / persistent pain, the pain is no longer a warning about damage, and as such does not serve any useful purpose. In many types of persistent pain, the most useful approach is to focus on living a fulfilling life with pain, without giving up on seeking out things that help.

Free Resources

The best free resource that I have found to learn about managing chronic/persistent pain is ‘Retrain Pain’  at https://www.retrainpain.org/

Screenshot (2)

The Pain Toolkit can also be useful, but it’s more geared towards musculoskeletal pain:

These blogs contain a lot of insight about living with persistent pain; the first aimed at people with pain

screenshot-4.png

and the second for healthcare professionals

It may also possible to be referred to locally taught pain management / supportive courses such as:

  • Self management programmes (SMPs)
  • NHS pain management programmes (PMPs)

And for exercise, ‘Exercise on referral/prescription’ courses at a local gym.

You can also access online NHS exercise studio videos at https://www.nhs.uk/conditions/nhs-fitness-studio/

Privately bought pain management resources include

  • Book and CD set: Mindfulness for Health: A practical guide to relieving pain, reducing stress and restoring wellbeing, by Danny Penman
  • The ‘Headspace’ app pain management pack is introduced here:

https://www.headspace.com/blog/2017/03/31/headspace-for-pain-management/

Screenshot (5)

and the day 1 meditation is here:  https://my.headspace.com/packs/36

  • I have always found HeartMath biofeedback to be the most effective system for creating resilience to stress, and use in in my MS clinic, where I did a small piece of research some years ago. There are also some published studies showing reduction in chronic pain when using this system. This is a simple technique that can be taught using biofeedback software by a licensed trainer, or used with a privately bought app and biofeedback sensor.

heartmath wavesheartmath inner balance

dreamstime_xs_68991845

I hope that by reading through this you will find something that helps on your journey with pain.

-Please let me know about anything that you think I’ve missed out; or mistakes – the topic is so vast! Also your experiences with things that do help you, so that I can continue to increase my knowledge and understanding, and pass on useful information to the people that I see, both in my MS Nursing clinic, and in my business life with Action Potential Simulation therapy.

Thanks, and

All the very 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
 

 

 

 

 

Fatigue in MS – and what to do about it

Fatigue – that horrible overwhelming inability to do another thing, sometimes even to think straight, is one of the most disabling invisible problems of MS. When I took a poll of the top symptoms that people wanted to troubleshoot in a holistic way, Fatigue was top. So here goes:
fatiguedWhy do people with MS experience fatigue?

Fatigue in MS is  of 2 types. Motor fatigue, or ‘short-circuiting’ fatigue, is when the difficulty of transmitting the electrical nerve signal down demyelinated, or damaged nerves, overwhelm the body’s ability to produce  ATP ( the energy molecule). Fatigued muscles just have to stop; you feel as if you’ve run a marathon, it’s like hitting ‘the wall’ for an athlete, and you have to sit down. After a short while, energy is replenished, and you can go again.

The second type of fatigue is more of a  widespread, overwhelming all-over fatigue, described here by MS campaigner, Shoshana Pezaro in 2015:

“It’s an absolutely crushing physical and mental symptom that cannot be overcome through will-power. When fatigue hits, I feel like my plug has been pulled out. Physically my body suffers extreme weakness and heaviness and every tiny movement, even raising my hand, is like fighting through thick treacle. But the mental effects are worse. The world separates from my consciousness. My brain is shrouded in a deep fog. It is a dreamlike state where I can hear people and see people, but I somehow I cannot connect. Fatigue cannot be fought, only managed through rest and care.”

Lots of research and debate has been carried out about what causes this type of fatigue; an interesting study reported at this year’s ECTRIMS conference investigated whether fatigue was more strongly linked to lesions in the brain, or to inflammation. They found a strong correlation to inflammation as the driver of this type of fatigue.

So to address Fatigue, we need to address the MS itself, and take both a short and a long view. The good thing is, there is a lot you can do to address both MS itself, and the problem of fatigue.

Starting with the most simple, here’s my list:

  •  Obviously read all the MS Society  ( you can download here)

http://www.mssociety.org.uk/ms-resources/fatigue-ms-essentials-14  and

pace yourself, budget your energy, and:

  • Get your groceries delivered online
  • Call a family meeting, explain that fatigue is a physical problem in MS, and give the family information about it, set rules and boundaries and share out the chores!
  • Save your energy for the stuff that counts – if you can get a cleaner, do so!
  • Fluids – ensure you drink plenty of water
  • The drug  Amantadine can be tried for fatigue in MS but it only seems to help about 20% of people, and sometimes causes unpleasant side-effects

Sleep

Baby smiling in bed with eyes closed and arms out.

It seems obvious, but if your sleep is poor, you will have fatigue!

Sleep problems:

  • No caffeine drinks after 6pm
  • Consider having something to eat before bed to prevent low blood sugar
  • Try to get outside as early as possible (once the sun is up) in the day, and making sure you are outside for at least ½ an hour a day; this helps to set your body’s circadian rythm( wake-sleep cycle)
  • Address causes of waking if possible – eg bladder, worrying, spasm, pain
  • Consider natural sleep aids like ‘Nightall’ etc which are made from hops and valerian – check that its ok to take these with any medication you are on
  • Use the HeartMath technique, for 10 minutes every morning, plus whenever you experience negative or worrying thoughts, or mind is free, and when you’re going to sleep at night.

heartmath-pic

  • Lock into a positive emotion

  • Focus on heart area

  • Breathe in for 5 seconds and out for 5 seconds in one long continuous cycle

  • imagine blowing up a balloon in your belly as you breathe in – your abdomen should rise first, then abdomen squeezes in as you expel the last bits of air out.

HeartMath is wonderful – I can’t find a good website to make it simple; you can buy all kinds of gadgets to allow yourself to see how you’re doing and coach yourself further, but the basic technique is this simple, and it has powerful and far-reaching effects on your resilience to stress, amongst other things.

Additional extras to consider.

mitochondria-2

Energy is created in our bodies by mitochondria, the ‘powerhouse’ of the cell. Each cell contains up to a thousand mitochondria. Mitochondria take fuel from the food we eat, and transform it into energy. They generate a chemical called ATP, which transports the energy for use by the body.

In order to function properly, mitochondria need the fuel of excellent nutrition and oxygen.

Dietary factors

  • Everything that we put in our mouths can either be pro-inflammatory or anti-inflammatory; what we eat has an impact on inflammation.
  • A study published in July 2016 showed improvements in fatigue over the course of one year,  in people with MS who adopted a low fat, plant-based diet

plant-based-diet

  • See www.overcomingmulstiplesclerosis.org  for this type of diet, which could be expected to reduce inflammation, www.fatfreevegan.com for recipes.
  • Also  have a look at the work of Terry Wahls, a medical doctor who reversed her own secondary progressive MS with advanced nutrition,  online. I prefer the overcomingms diet as above, but Terry’s extras like green smoothies and intense nutrition make sense to add in.
  • Be aware of food intolerances. More people with MS have full blown celiac disease than in the general population, but you can also have a milder food intolerance that is not picked up by clinical allergy testing. Experiment to find out if some foods worsen your fatigue, by excluding them for 3 weeks and then bringing them in and noticing. Common irritating foods are bread, cheese, dairy products, gluten grains, sugar, and sometimes beans, but many people have individual things that they don’t tolerate.
  • Vitamin D3 at least 5000 IU daily & consider minimal erythmal dose sunbed. Some people may need more to get into the optimal range of 150-200nmol per litre; you can get your blood checked at http://www.vitamindbloodtest.org.uk
  • A study published this year found a significant reduction in fatigue in people with MS who took 500mg of Co-enzyme Q10 daily.
  • Omega 3 fatty acids are found in oily fish, nuts, seeds and whole grains, and help to calm down and prevent inflammation, aswell as helping to store and retain energy. 20g daily can be supplied by 2 dessert spoons of cold pressed flax seed oil used cold, and make sure it’s fresh; one example; www.flaxfarm.co.uk
  • B vitamins – some people are deficient in these, which can mimic symptoms of MS; some people report these help with fatigue; probably when there has been some deficiency present.
  • Probiotics & fermented foods– very important to restore health of gut, especially after antibiotics, which contributes to health/ energy

Exercise  &  Oxygenation hyperbaric-chamber-10-person

  • Many people report that hyperbaric oxygen improves MS fatigue; if this isn’t possible, at least do deep breathing!
  • Just had great comment in response to this post by Frank:
  • “The very best thing for me has been taking Oxygen Therapy at the MS Centre. There are 56 centres to choose from so there’s almost bound to be one near you – unless you live in Northumberland or Cumbria. 
    With Oxygen Therapy and MS, lots of us find there there is an optimum pressure. The ascending protocol suggests that people should start at 1.5 ATA, move to 1.75 ATA and then try 2 ATA. After each session note down how you feel immediately afterwards and then again about 24 hours later. Once you’ve tried all three pressures you should know the one that suits you best.
    As you say, Miranda, it does not work for everyone, but then neither do any of the drug or dietary therapies – we are all different – however, I’ve found it great for reducing my fatigue and if I miss my weekly session, I certainly feel the impact. Some of my colleagues find they are really tired after the Oxygen Therapy but then feel full of energy the next day, others, like myself, feel the benefit within a few hours. Whatever your views, it’s definitely worth giving it a go.”
  • Regular cardiovascular exercise can help to raise oxygen and energy levels, in your own zone of tolerance. Exercise has been shown to be strongly anti-inflammatory – make it part of your daily routine in one form or another.
  • Some people with fatigue have reported improvement to fatigue by raising the head of their bed by 6 inches. Called ITB or inclined bed therapy – See New Pathways issue 62

APS Therapy

At the MS Therapy Centre where I work we have now had many cases of people’s MS fatigue, including post relapse, responding very well to APS Therapy. This makes sense as the treatment stimulates production of ATP, and is a replica of the wave-form of action potentials ( the electrical nerve signal.)active-nerve-cells-29027134 It hasn’t worked for everyone that’s tried it; it seems to be more effecitve for fatigue in relapsing remitting, rather than progressive MS, and we are still collecting data about this, but the therapy is available privately ( see ‘my other work’ button)  and at 7 MS Therapy Centres:

Bedford, Portsmouth, Kent, Sutton & Croydon, Leicester, Berkshire and Hertfordshire and MS-UK’s Wellbeing centre, Joseph’s Court in Colchester.

Therapies

Lots of therapies, including Shiatsu, Reflexology, Yoga and ‘EFT’ tapping are found by people to improve wellbeing, energy and sleep which may then help with fatigue.

Remember that Disease Modifying Therapies (DMTs) all aim to reduce inflammation and relapses, and by doing so, can have a marked impact on reducing fatigue and improving how you feel. If you are eligible, but not on a DMT, review and reconsider the situation. If you’re on a DMT but still having relapses, request a review, as per the the MS Brain Health Campaign. And when choosing a DMT, ask about the common side-effects, explore how other people have responded, and choose one that fits best with your needs and aims.

happy

In summary, with both long and short term strategies, there are lots of things you can do to beat fatigue and enhance your energy. Some of the long term strategies take longer to bear fruit – but keep going; many people with MS can remember a time when they were so much more fatigued than they are now.

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:

mstrust.org.uk/a-z/spasticity-and-spasms

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

 

 

 

 

 

 

 

 

 

Stem cell and Unicorn poop!

 

Dear all,  1) STEM CELL FOR MS

stem cell

I thought the Panorama piece about stem cell transplantation (AHSCT, ASCT or HSCT) for MS was well done and respectful to people with MS. You can watch it here: http://www.bbc.co.uk/programmes/b06ss17g ,

and there is very good following information on the MS Trust website at https://www.mstrust.org.uk/a-z/stem-cell-therapy#availability

I’m summarising the main points from that here:

As with most treatments for MS, it is only effective for people with either relapsing remitting, or early progressive MS, for whom inflammation is a feature – ie relapses, or active lesions on MRI scan. It’s an aggressive treatment & has significant risks, including risk of death – now reduced to 1-2 per 100 people treated, due to infection.

In the UK, it’s only been offered as treatment on the NHS so far to a very few people, with very aggressive forms of MS, who have continued to relapse on disease modifying therapies, and in general early in the disease course, before the onset of any permanent disability (although rare exceptions in recent disability within last year)

There is one clinical trial currently recruiting in the UK currently; details here:

https://clinicaltrials.gov/ct2/show/NCT00273364,

There are stem cell treatments going on commercially, which some people have travelled abroad for. Costs are between £30,000 and £85,000. Some clinics may accept people for whom the benefits would not be considered by UK clinicians to balance with the risks, and an important set of questions to ask yourself and the clinics, if you were to consider this, is on the MS Trust site.

Stem cell therapy has the potential to bring significant benefits to some people with MS. It cannot be seen as a cure, as in trials, for some people, progression has continued after around 2 years. Good progress is being made through clinical trials & the outcomes of treatment are improving as more is learned. However, as research is still at an early stage, stem cell therapy is not widely practiced and the results of treatment for a particular person cannot be predicted. The risks should be very carefully considered, including the possibility of treatment-related death,  and weighed up against potential benefits.

 

 

2) UNICORN POOP!

 

Click below to watch

And now, from one of my favourite topics, poo, to another – more poo!This very funny video has a great product to sell – the ‘Squatty Potty’, which gets you in the correct natural position to effectively ‘have your bowels open’, eliminating the U bend kink that puts everything under strain when you sit on a western style toilet. But it’s worth watching just for the handsome prince eating unicorn poop icecream.

All the best! – Miranda