Me, My MS and I


MS Week 2011

Time flies, and MS Awareness Week has rolled round again! This week sees many things going on in support of MS Week. MS is in many ways a silent disease with hidden symptoms that aren’t always outwardly apparent, such as pain and fatigue. As a result, many people who aren’t affected by MS in one way or another don’t know terribly much about it. MS Week and World MS Day are our chances to raise awareness of MS and spread information.

World MS Day falls in the middle of MS Week, on Wednesday 25 May. You can sign the 2011 campaign for access to appropriate work petition here.

What’s happening during MS Week?

Putting MS On The Map

The MS Society UK has launched the MS Register – “This globally unique research tool is the world’s first, for any condition, to combine anonymous and confidential information from patients, with clinical data and routine NHS information. The MS Register could have a profound effect, and transform the delivery of care and services for people with MS.” You can find out more about the MS Register and join online, helping to put MS on the map.

There are also Map MS roadshows planned, and it’s not too late to get involved in a Cake Break and raise money in a yum way! Get involved

Be Bold In Blue

The MS Trust has lots planned for MS Week – you can find out more here. Their Be Bold In Blue fundraising event on the 27th May is a great way to get involved and raise money in a fun way, such as a cake sale, or a blue themed quiz night.

Go Green

Go Green for the MSRC and let people know what you live for, and that life is for living! There are also scheduled chat room sessions being held on the MSRC website.

It’s great to know that so much is being done to raise awareness of MS, especially as it’s the most common disabling neurological condition affecting young adults in the UK – a stat that’s very close to my heart as I’m only 24 and often meet with exclamations of surprise that I have MS at my age (and have had for several years). The more people that know about MS and understand it, the better it is for everyone as it removes the mystery and fear factor.

Many of the activities are fun and easy to get involved in. You don’t have to have MS to participate, either. Go ahead and get involved! : )


What Does Monsterski4 Mean To Me?

When I first heard about Monsterski4 after joining Twitter, I was amazed. I had no idea people put themselves through such physical hardship, even if they love skiing, to raise money for charity. It makes me proud of the team for stepping forward and making the conscious decision to go to such lengths to help the MS Trust, and subsequently MSers as a whole, by raising money in this way. It could be all too easy to raise money in a less challenging way (and there is absolutely nothing wrong with that!) but I feel the challenge of skiing 5 Everests in 5 days metaphorically represents the challenge that is life with MS.
 
It’s rather difficult to express what Monsterski4 means to me (although I’ll give it my best shot!) even if I know how it makes me feel. The emotions are difficult to translate to the written word: I’m humbled, proud and quite frankly astounded that the Mosterski4 team push themselves this far to raise money. I’m also very grateful: the MS Trust provides a fabulous service for people with MS and their families and friends, and without fundraisers like the Monsterski4 team and others, it would be much more difficult for the MS Trust to provide the services it does.

In many ways, MS is a ‘silent’ condition – there are few outward signs other than walking with difficulty or using a wheelchair or walking stick – and as such is a very much forgotten disease. It is often little thought about except by those it affects and those who know people with MS. Therefore, it’s humbling that people who don’t have MS would support Mike in Monsterski4 and push themselves to such extremes to benefit the MS Trust. In the harsh world that we now live, the team must be praised for their generosity, selflessness and travail. Although it’s not all bad: they do enjoy skiing too!

I must also confess to a certain amount of envy: I’d love to be physically able to ski 5 Everests in 5 days, but I’d also love to be able to ski in the first place! Something I’m not terribly proud to admit to, but I felt I should be as honest as possible.

This article may be about what Monsterski4 means to me, but I feel that Mike deserves a rather large mention. I may not know Mike, but my uncle was in the RAF for many years, and I know what RAF men are made of: strong stuff. It’s testament to Mike as a person that he could rouse this team to push themselves to such extremes and speaks of an extraordinary man: I don’t know many people who’d take on this challenge for charity, even if they do love to ski!

If you take one thing from reading about this challenge, let it be inspiration. Inspiration not only to fundraise, but also inspiration from Mike who battles his MS every step of the way.  And don’t forget to support this fabulous team on their monstrous Monsterski4 challenge!

The best of luck to the Monsterski4 Team!

You can read all about the Monsterski4 challenge and sponsor the team at: http://www.monsterski4.com/ 


Consultation on Tuesday

The time’s flown much more quickly than I thought it would, and the date for my LDN consultation has rolled around – I go to Dr Tom on Tuesday afternoon. Fingers crossed!! Butterflies have started.

I had to create a Twitter account for a work team day held on Friday. Was a bit reluctant at first as didn’t see a value in using Twitter after the team day (I’m not terribly keen on telling everyone what I’m doing all the time) but having logged on and looked around, tentatively sending a few tweets, I’ve realised it’s a great place to network with those who have MS, who raise awareness and who raise money. The MSRC and MSTrust both have accounts (and others too!!), and there are lot of great tweets throughout the day. Consider me a Twitter convert!! I’ve also discovered TweetDeck – it’s fantastic for me when the fatigue’s affecting my faculties; I can see clearly all that’s going on on Twitter and it’s great for the limited attention span 😉 I’m afraid the transition to techie is now complete!! You can follow me on Twitter (if you can cope with more of my ramblings!!) – my user name is tartan_miss

One of my Twitter followers jsmackenzie has a website about the Monster Ski to raise money for the MS Trust and it also tells Mike’s MS story. Well worth a look – http://www.monsterski4.com/index.php?option=com_content&view=article&id=67:being-positive-monsterski-1&catid=30:about-ms&Itemid=55

Coming soon – how I came to realise I had MS and be diagnosed and how it’s impacted on my life (after reading Mike’s story, I realised I’d been pretty lax in that dept.).

Enough of my ramblings for one day me thinks 😉

LDN Info As Promised

In the spirit of LDN Awareness Week, I though I’d add some of the (oft promised!) info I’ve collated on LDN. I don’t profess it to be comprehensive, or even correct, as it’s only info I’ve gleamed from websites, but I felt it’d be a useful start when confronted with the veritable smorgasbord of information available out there.

Low Dose Naltrexone is a very low dose form of Naltrexone; an opiate antagonist which is used in much higher doses to treat drug addicts.

I’ve found this information useful in forming my own opinion of LDN and whether I should take it for my MS or not, although some soul searching and copious amounts of reading were involved too! I’ve quoted directly from the websites here as I feel the balanced arguments and information may be lost in my ‘version’. Although I feel that LDN may be a wonderful advance in the treatment of MS and other diseases, it’s a personal choice and everyone should research and think carefully about it before taking the plunge.

I’ve also been pointed in the direction of New Pathways, a magazine containing articles which are based on the real experiences of people with MS and provides a rich and varied approach to treatment, therapy etc including LDN, available from the MS Resource Centre: http://www.msrc.co.uk/index.cfm?fuseaction=show&pageid=2825 I believe they’re currently offering free subscription for a year, but it’s ending very soon…….

Apologies for the length of the post!

From ldnresearchtrust.org.uk:
How Naltrexone Works:
Naltrexone is prescribed as an opiate blocker for heroin addicts in doses of 150mg a day.

Its benefits are due to the temporary inhibition of brain endorphins (a natural pain-killer, produced in the brain). This results in an increase in the production of endorphins, resulting in the reduction of painful symptoms and an increased sense of well-being. Usually, 3 mg of LDN is taken for the first month and 4.5 mg thereafter. It has been reported that after an initial dose of just 3 mg per day, people have experienced a range of benefits including a reduction in spasms and fatigue, improved bladder control and heat tolerance, as well as improvements in mobility, sleep, pain and tremor.

In mainstream medicine it is only the symptoms of MS that are treated, and mainly with drugs that have not been clinically trialled for MS.

LDN can be of benefit at whatever stage of the MS, whereas the non-interferon drug Copaxone, and the interferon drugs Rebif, Avonex and Betaseron are available only to a few people that meet the strict criteria. These drugs are very toxic, have numerous side-effects, and work only for 30% of the people taking them. Of that 30%, the best that can be expected is a reduction in the severity and number of attacks of up to one third.

The cost of interferons range from £8,000 – £12,000 per person per year, whereas the cost of LDN can be from as little as £15 a month.

Anecdotal evidence from over 16,000 US users suggests that LDN has a 98% record at preventing further MS progression, and many users have experienced considerable improvements in their condition, often within days or weeks of beginning the treatment.

LDN is neither a miracle drug nor a cure; the aim of LDN is to stop progression by helping to improve symptoms (for most) and, as it is at such a low dosage, there are little to no side effects. Any that might appear are normally gone within the first few weeks. LDN is a drug that is working for thousands of people throughout the world. It greatly helps with MS at whatever its stage, but because it has not been trialled for MS, very few GPs are prepared to prescribe it.”

From msrc.co.uk:
“What is Low Dose Naltrexone?
Naltrexone is a drug called an opiate antagonist. Used to treat opiate drug addiction, it blocks the response to opiate drugs, such as heroin or morphine. Doses for this are 50-150mg. The idea of using LDN for MS was devised by Dr. Bernard Bihari, a practising neuro-physician in New York, USA. Low-dose Naltrexone (LDN) has been in use in the United States in the treatment of MS since 1985. It is used much less in the UK.

How does it work?
In MS, LDN works by briefly obstructing the effects of brain endorphins (the brain’s natural painkillers). This has an effect of stimulating the increased production of these same endorphins, which in turn stimulate the immune system, thus reducing the activity of the MS.

What MS Symptoms does LDN help?
Neuromuscular spasm and fatigue. Also patients who are in the middle of an acute relapse when they start LDN have generally shown rapid resolution of the attack.

Dose
For MS, 4.5mg each day, taken late each evening. Early research shows that a dose of naltrexone 3mg is able to increase the level of T-cells by 300%. This benefit lasts around 18 hours.

Does it work?
Reports show that 98 to 99% of people with MS on LDN experience no further disease progression in both relapsing-remitting and chronic progressive MS. Dr. Bihari has more than 70 people with MS in his practice and all have been stable over an average of three years. The original patient who used this therapy has been taking the drug for 17 years. In addition, more than 2000 people with MS within the United States, have been prescribed LDN by their own doctors.

Side-effects
At high dose (150mg+) the drug has a number of significant side-effects. At the recommended dose of 3-4.5mg no significant side-effects have been reported. It should be noted that this treatment cannot be used by those people already receiving beta interferon. Because LDN stimulates the immune system and beta interferon suppresses it, the two therapies are incompatible.

How soon does it work?
Around two-thirds have some symptomatic improvement within the first few days.”

From mstrust.org.uk:
“Naltrexone (Nalorex) is a drug that is licensed to treat people with addictions to opioid drugs such as morphine, codeine, methadone and heroin. Following anecdotal reports that low doses help the symptoms of people with a wide range of conditions, there have been a few initial studies of LDN in MS.

A study in Milan of 40 people with primary progressive MS showed LDN to be safe and well tolerated. It also found LDN reduced spasticity, but increased pain and had no effect on fatigue, depression or quality of life.

A study at the University of California in San Francisco in 80 people with MS showed LDN improved quality of life measures, but didn’t find any effect on symptoms such as fatigue, bladder and bowel control, sexual satisfaction or visual function.

Although LDN is not currently licensed for use in MS, a doctor may prescribe it ‘off label’ if they feel that it is an appropriate treatment. When a drug is prescribed ‘off label’ this means that the medicines regulatory authority has not approved it for a particular condition and that there is limited safety or efficacy data relating to its use in that condition. Therefore, drugs prescribed ‘off label’ are at the discretion of the prescribing doctor and they must take full responsibility for the patient’s progress on the drug. Although LDN is relatively inexpensive, funding for ‘off label’ prescriptions may or may not be accepted by the local primary care trust (PCT).

How LDN works
It is thought that LDN works by encouraging the body to produce endorphins and by stimulating the immune system – an approach that differs from most MS treatments, which attempt to reduce immune activity.”

From mssociety.org.uk:
“Background on LDN
The MS Society is aware of recent activity regarding access to LDN. We appreciate that there are a number of anecdotal claims surrounding the potential of LDN to treat the symptoms of MS, however; we are an organisation that supports an evidence-based approach to research and are aware that there is limited peer-reviewed research available on the subject. We have summarized current research evaluating the potential of LDN as a therapy for MS on the page below.

What is it?
Naltrexone is licensed in the UK to help treat people who are addicted to opiates, such as heroin. Advocates of its use in MS suggest it should be given at a much lower dose than usual for the treatment of MS (10-50 times lower dose).

What does it do?
Some research suggests that when naltrexone is given at low doses it triggers a prolonged up-regulation of endorphins. This increase may have an anti-inflammatory effect which could be beneficial in the treatment of MS. It has also been hypothesised that LDN may be able to reduce injury to the nervous system by decreasing the harmful effects of two types of chemicals called ‘free radicals’ and ‘excitotoxins’ (Med Hypotheses 2005; 64(4):721-4). .Does it work?

In a small pilot clinical trial (Smith JP et al., American Journal of Gastroenterology; 2007 102(4): 820-8) LDN has been shown to improve active Crohn’s disease, a condition which is caused by the immune system causing damage and inflammation to the intestinal tract.

At the 60th Annual Meeting of the American Academy of Neurology in Chicago in April 2008, two groups reported on the use of LDN. Dr. Gianvito Martino (San Raffaele Hospital, Milan, Italy) and colleagues assessed LDN in an open labeled trial of 40 people with primary-progressive MS for 6 months, evaluating its safety and tolerability. Five patients dropped out. A significant reduction of spasticity was measured at the end of the trial. The most common side effects included short-term increases in liver enzymes, urinary tract infections, mild agitation and sleep disturbance. This study was published in the September issue of the journal Multiple Sclerosis (2008 Sep;14(8):1076-83)

Dr. Bruce Cree (University of California, San Francisco) and colleagues reported that eight weeks of treatment with LDN significantly improved quality of life (specifically, mental health, pain, and self-reported cognitive function) in 60 people with MS as measured by the MS Quality of Life Inventory. No impact was observed on physical quality of life (such as fatigue, bowel and bladder control, sexual satisfaction, and visual function). Vivid dreaming was reported during the first week of treatment, but no other adverse side effects were reported.

There is a study which began in early 2007 at the University of California which involving 80 people with MS looking at the effects of LDN on quality of life in people with MS.

In May 2007 the MindBrain Consortium and the department of psychiatry of Summa Hospital System of Akron in Ohio announced a new scientific study of the effects of treating 36 people with progressive or relapsing MS with LDN. The study aims to look at symptom severity as well as changes in quality of life and sleep patterns.

Should I take it?
Currently there is not enough evidence-based information to prove LDN is an effective treatment for MS. The results of these small pilot studies are an important step in determining if there is any benefit for people with MS and the MS Society welcomes this research.

LDN is not licensed for the treatment of MS in the UK. Some people with MS in the UK may have been prescribed LDN by their own GPs, however many GP’s are reluctant to prescribe LDN in the absence of phase III clinical trial evidence that the drug is clinically beneficial.

The decision to take LDN is a matter for individual judgement, though people are advised to ‘err on the side of caution’ until the safety and effectiveness is fully established.”


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