Natural treatments for MS spasms

Natural treatments for spasm in MSI often get asked about whether there is anything else apart from muscle relaxant

 

 

medication 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. I’m going to do a separate blog post about this.

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.

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.

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.

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.

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) APS Therapy

Quite a few of the people with MS who’ve been using APS Therapy for pain in the past 3 years, have also reported a reduction in spasms. We are now beginning to expand our trial and therapy to include spasm as an inidcation 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

 

 

Who needs a medical degree #2: Neuropathic pain relieved by bloke with a shed in South Africa

osteofm

One talk caught my eye in the COPA brochure this year.  Compared to the glamour and hard sell of some of the technologies on exhibit, this sounded like an old-fashioned modest but serious research project.  It was presented by a nurse from a Multiple Sclerosis Therapy Centre in Bedford.  “Interventions for neuropathic pain.”  Now neuropathic pain is not something I see all the time, but people do present with it, sometimes as a secondary problem. They have often lived with it and don’t generally expect me to be able to help much.  While I have sometimes had good results it has always been something of a mystery to me.  So this was potentially a very useful talk.

The Problem of Neuropathic Pain

I got a seat early: luckily, as it was standing room only by the time Miranda Olding began.  She described neuropathic pain as an “unpleasant lesion or disease…

View original post 1,768 more words

Fingolimod – be aware of this

Just a quickie – from Bart’s MS Blog by Gavin Giovannonni

ClinicSpeak: Fingolimoders need to be aware of opportunistic infections

If you are on fingolimod please be vigilant about infections, including opportunistic infections. #ClinicSpeak #MSBlog #MSResearch

“In response to an anonymous comment on the Natalizumab retinitis post yesterday. I think it is appropriate to warn all MSers on fingolimod to be vigilant as well about infections and opportunistic infections.”

“The two case studies below highlight that opportunistic infections and severe viral infections are an issue on fingolimod. The first case report below is of a near fatal case of herpes simplex virus encephalitis (HSVE). This is not surprising, in fact in the phase 3 TRANSFORMS trial there was a fatality due to HSVE in an MSer on fingolimod, albeit on the higher, 1.25mg, dose.”

HSVE

“The second case is of a MSers on fingolimod developing Kaposi’s sarcoma, which is due to a specific herpesvirus. Kaposi’s sarcoma is classified as an opportunistic infection and is seen most commonly in people with AIDS and in people who have had a transplant and are on immunosuppression. Although this patient had a lymphopenia (PML, I would predict the occurrence of other opportunistic infections in MSers on fingolimod.”

“One infection that can be screened for is HPV, the cause of cervical cancer. If you are a woman on fingolimod please make sure you don’t miss your regular cervical, or PAP, smears. If you live in a country in which this is not mandatory please ask your family doctor to arrange for this to happen. As always prevention is better than cure.”

Epub: Pfender et al. Reactivation of herpesvirus under fingolimod: A case of severe herpes simplex encephalitis. Neurology. 2015 May 8.

Epub: Tully et al. Kaposi sarcoma in a patient with relapsing-remitting multiple sclerosis receiving fingolimod. Neurology. 2015 May 12;84(19):1999-2001.

Primary Progressive MS drug trial recruiting – Laquinimod

MRI

This drug trial is now recruiting for people with PPMS, in London. It’s a drug with exciting possibilities, not a ‘repurposed’ medication.

Here’s what Professor Giovannonni of Barts hospital and http://multiple-sclerosis-research.blogspot.com has to say about Laquinimod:

“As you are aware I am very impressed by the laquinimod phase 3 results. Why? Laquinimod is a drug that does not have much effect on inflammatory MS disease activity, i.e. relapses and MRI activity (Gd-enhancing and new T2 lesions). Despite its weak anti-inflammatory effects laquinimod has an impact on disability progression, that appears to be independent of relapses and it slows the rate of brain atrophy. All this points to laquinimod having neuroprotective effects downstream of inflammation. It now appears that laquinimod may be working on glial cell activity and the innate immune system; laquinimod down-regulates the mechanisms responsible for the slow-burn we see in MSers. Are the laquinimod results reliable? Almost certainly they are; why? Mainly because there has been two large phase 3 studies showing the same effect. This makes  the chances of this being a chance result highly unlikely.”

and here’s another post about it from the pharma side:

http://www.drugdevelopment-technology.com/news/newsteva-and-active-biotech-enrol-first-patient-in-laquinimod-phase-ii-trial-for-ppms-4561605

and here’s the link to the trial site from NHS choices website.

http://www.nhs.uk/Conditions/Multiple-sclerosis/Pages/clinical-trial-details.aspx?TrialId=NCT02284568&Condition=Multiple%20sclerosis&pn=1&Rec=0&CT=0

Exciting opportunity if it feels like you have nothing to lose, but ALWAYS REMEMBER TO ASK THESE QUESTIONS!

Questions to ask when considering taking part in a trial:

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?

All the best!

Miranda

 

 

Biotin for progressive MS – possible new treatment

Happy spring, everyone! Hopeful news for new treatments for progressive MS recently.secondary progressive MS

First up, Biotin. A new study using this common vitamin reported reduction in disability for 21 out of 23 participants with progressive MS.

Twenty-three consecutive patients were treated with high doses of biotin ranging from 100 mg to 600 mg/day (median=300 mg/day divided in three doses) for 2 to 36 months (average of 9.2 months).  Fourteen patients suffered from Primary Progressive MS and 9 from Secondary Progressive MS. Five patient had visual problems, and 18 patients  had problems with disability related to spinal cord involvement. Assessment was of visual measures, walking distance, EDSS, TW25, muscle strength testing and videotaped clinical examination in a subset of patients; also  fatigue, swallowing difficulties, dysarthria, Uhthoff׳s phenomenon and urinary dysfunction.

21 out of 23 participants showed evidence of improved disability, 2 to 8 months after starting treatment. This was an open study – in other words both the people with MS and their doctors knew what treatment they were receiving; which can bias the results.

Possible modes of action of Biotin were suggested to be: activating the Krebs cycle in demyelinated axons to increase energy production, and assisting in synthesisng the long chain fatty acids that are needed to produce myelin.

Conclusions, of course, are the ‘more research is needed’, and  luckily, two multi-centre double-blind placebo-controlled trials are currently underway.

But to understand more how this information can be used at the current time, let’s look into:

What is Biotin?

foods-high-in-biotin

Biotin is a form of vitamin B, present in many foods and available as a supplement  under many names, including  vitamin B7, vitamin H, biotina, biotine, and coenzyme R.

Biotin works by breaking down food into sugar that the body can use for energy; it’s important for healthy skin and nails, eyes, liver, and nervous system, and sold as a supplement to aid hair and nail growth, at strengths of up 10,000 micrograms.

In this study it was used in such a high dose – 100 – 600 miligrams – ( there are 1000 micrograms in 1 milligram)  that it’s counted as a drug and called MD1003, rather than a nutritional supplement.

Biotin exists naturally in many foods; highest sources shown below:

Interestingly those gut bacteria pop up AGAIN! – Most bacteria in the gut synthesise Biotin, it’s possible that humans make use of the biotin they create, and for those on long term antibiotics or medication designed to manage epilepsy ( and often used for pain in MS), and, in people with neurological conditions such as MS the ability to synthesis biotin can be compromised, and lower levels of biotin than usual were found in the cerebrospinal fluid in one study. Another reason to keep those good bacteria happy!

Food Serving Biotin (mcg) (32, 33)
Yeast 1 packet (7 grams) 1.4-14
Bread, whole-wheat 1 slice 0.02-6
Egg, cooked 1 large 13-25
Cheese, cheddar 1 ounce 0.4-2
Liver, cooked 3 ounces* 27-35
Pork, cooked 3 ounces* 2-4
Salmon, cooked 3 ounces* 4-5
Avocado 1 whole 2-6
Raspberries 1 cup 0.2-2
Cauliflower, raw 1 cup 0.2-4
*A 3-ounce serving of meat is about the size of a deck of cards

Of course, nobody is recommending people with MS go out and take these giant doses of Biotin themselves. However, Biotin is not known to be toxic.On the trial, there were 2 deaths, but from unrelated causes – one heart failure, and one pneumonia.  Oral biotin supplementation has been well-tolerated in doses up to 200,000 mcg/day in people with hereditary disorders of biotin metabolism (1). In people without disorders of biotin metabolism, doses of up to 5,000 mcg/day for two years were not associated with adverse effects (35). However, there is one case report of life-threatening eosinophilic pleuropericardial effusion in an elderly woman who took a combination of 10,000 mcg/day of biotin and 300 mg/day of pantothenic acid for two months (36). Due to the lack of reports of adverse effects when the Dietary Reference Intakes (DRI) were established for biotin in 1998, the Institute of Medicine did not establish a tolerable upper intake level (UL)for biotin (1).

From the MS_research blog of UCL:

Gavin Giovannoni commented:

Please note that OTC (over-the-counter) biotin is not the same as the high-dose, ultrapure, MD1003 formulation. Representatives of the company, developing the drug, have informed me that most OTC vitamin preparations have very little bioactive biotin in them. This is why I would not recommend using OTC formulations unless they are tested and certified to have bioactive biotin in them.

And another interested party added this information:

Doing some Googling, the best guess of what MedDay mean by ‘bioactive biotin’ is d-biotin, one of 8 stereoisomers of Biotin, and the only one to be biologically active (https://books.google.co.uk/books?id=iX3Bm85KQVAC&pg=PA105)

It seems to me that the question is therefore whether a given OTC formulation contain d-biotin or other isomers too.

From further Googling, some of the OTC suppliers/manufacturers claim that their product is d-biotin:

http://www.privatelabelnutra.com/biotin-10000-mcg-p-832.html
http://www.swansonvitamins.com/swanson-premium-biotin-5-mg-100-caps
http://www.toxinless.com/biotin

There is a facebook group where people share information about Biotin for Progressive MS, and presumably, where they have obtained it:

https://www.facebook.com/groups/BiotinForProgressiveMS/

The study itself is a good and interesting read:

Sedel F, et al.

High doses of biotin in chronic progressive multiple sclerosis: A pilot study.
Multiple Sclerosis and Related Disorders 2015;4:159-69.Read the full text

1) http://www.ncbi.nlm.nih.gov/pubmed/10577274
Cerebrospinal fluid levels of biotin in various neurological disorders.
Acta Neurol Scand. 1999 Jun;99(6):387-92.