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

biotin 2

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

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

What are the potential risks?

How many people/ what percentage have these risks

What are the potential side-effects?

How many people /what percentage get these?

What can be done if I do have a side effect or risk? Is it reversible?

What are the potential benefits?

What percentage have had these benefits?

How much of these had similar condition at a similar stage to me?

How long do they last?

Is more treatment necessary?

How much does it cost?

Will you give information either to me or to my doctor about what therapy I have undergone?

How will I be monitored? Eg scans, bloodtests etc

How often will I have to return for follow up? Is there a charge?

Will they pay my travel expenses?

How will I know if it’s worked? What’s the timescale for improvement?

Is there a placebo ( dummy drug) group? If I’m in the placebo group, and the real treatment group benefit, will I have the chance to change to the treatment group?

If I have the treatment during the trial, and benefit from it, will I be able to carry on with it long term?

Biotin

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

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

Statins

statins

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

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

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

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

all the best

Miranda

 

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Lipoic acid for MS

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

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

antioxidant

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

Pic source:   http://www.desimd.com

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

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

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

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

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

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

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

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

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

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

eat-a-rainbow

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

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

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

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

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

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

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

and

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

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

Hope this helps!

all the best,

Miranda
 

 

 

 

 

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

xcel

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

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

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

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

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

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

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

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

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

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

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

Alemtuzemab

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

Vitamin D vit D.jpg

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

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

Siponimod for progressive MS

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

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

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

hb02Oxygen

MS from an energy perspective.

Q:Why are animals with experimental animal MS paralysed?

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

Q Why are axons depolarised?

A: Hypoxia ( lack of oxygen)

Q: Why is the inflamed central nervous system hypoxic?

A: Reduced blood flow

Q Why is blood flow reduced?

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

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

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

Diet and Gut in MS

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

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

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

Salt:  

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

Ending on a high

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

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

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

miranda

 

 

 

 

What I learned at ECTRIMS: part 1

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

 

 

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

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

The intro – X. Montalban (Spain)ectrims

Good to hear the current aims:

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

This leads into a presentation I saw in the break:

Brain Health – G. Giovanonni (UK)

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

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

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

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

You know that I believe in doing even more!

http://www.msbrainhealth.org/

 

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

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

The interventions whose evidence is robust enough are:

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

Improving mobility – D. Centonze ( Italy)img_3963

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

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

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

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

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

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

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

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

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

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

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

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

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

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

img_3972

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

 But I’ll try to finish this off tomorrow!

All the very best!

Miranda

 

 

Natural treatments for MS spasms

Natural treatments for spasm in MS

 

 

 

 

 

 

 

 

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

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

standard advice on muscle spasm

Now let’s get onto the natural options.

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

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.CBD vape 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 and can be taken orally 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. Here’s a video of Mark, demonstrating how he uses it for spasm and fatigue:

 

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

 

 

 

 

 

 

 

 

 

 

 

 

 

How not to die from a DVT

We very sadly recently lost a member, who died as a result of a deep vein thrombosis, or DVT. A DVT is a clot that forms in the leg, but then travels in the circulation and blocks off a narrower blood vessel somewhere else in the body. Our greatly missed friend was someone who could walk, with a frame, but only just. A powerful frame, tall, with a bit of weight – these things put more pressure and constriction on the veins in a seated position. On his own admission, he didn’t drink much throughout the day. He hadn’t been able to access his physio or exercise in the gym for some weeks as awaiting a wheelchair accessible vehicle, and mobilising was a struggle – he was awaiting a baclofen pump.

We wanted to get everyone thinking about their own risk factors, and please, to take the necessary steps to help avoid this sudden and possibly fatal incident.

DEEP vein throbosis

The main cause of DVT is immobility – especially during or after surgery, but can occur without surgery. Things you can do to protect against DVT include:

  • regular brisk walking – not always possible I know! But even whilst sitting,
  • If possible, regularly circle your ankles, get into a ‘tiptoe’ position and then lift your toes off the floor whilst keeping your heels on the ground.
  • when resting, when possible, spend some time with your feet higher than hip height.
  • Stay well hydrated – this keeps the blood less sticky and less likely to clot.
  • If you are not able to move your legs, consider wearing ‘travel socks’ or ‘flight socks’. These are equivalent to grade 1 thrombo-embolytic deterrent (TED), or ‘compression’ stockings.
  • If your legs are swollen, or you have had thrombophelbitis, you can talk to your GP about getting grade 2 or 3 ( tighter) TEDs on prescription. You may need to first have test with a hand held Doppler scanner, done by a nurse.
  • They are available in different colours, and in open or closed toe options.
    • They should be removed at bedtime and put on first thing in the morning. It is important to put them on before your legs start to swell in the mornings.
    • Stockings should be replaced every 3-6 months. Each time you should be measured again, just in case the size needs to be changed.
    • You should always have at least two pairs prescribed so that one pair can be washed and dried while the other is worn.
    • Do not tumble dry support stockings, as this may damage the elastic.
    • They can be made to measure if none of the standard sizes fit you.
    • Support stocking applicator aids are available if you are unable to get them on. You can discuss this with your pharmacist or nurse.

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

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

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

DVT