Me, My MS and I


Steroids

Pharmacy ordered my methylprednisolone last night for me to collect this morning. I was prescribed 500mg per day for 5 days. Tried to collect it this morning, was left standing for 40 minutes (not easy in my current condition I can tell you!!) was then informed they couldn’t give me the tablets as the dose was very very high and they wanted to check with my GP the rx was correct! Why this wasn’t picked up when I submitted my rx last night (or even this morning when the tablets arrived and they looked at my rx again, I have no idea!). Exhausted, I limped off back to work to return at lunch time when they’d confirmed with my GP – you guessed it – the dose was correct. I submitted a complaint to the pharmacy. I understand they have to check very high doses (apparently the maximum dose, according to the pharmacist, for methylprednisolone is 40mg per day in usual cases. My anger came from having to stand around when they knew my current condition, and that the query with the dose wasn’t picked up sooner. Not a happy bunny at all.

Started the methylpred. today in conjunction with a ‘gastric protector’ – omeprazole. 5 foul tasting methylpred. tablets and a horrible taste in my mouth. Hopefully they work though, then I can get back to taking LDN. No change in symptoms yet, but it’s too early for that. Maybe by tomorrow evening if I’m lucky. The list of side effects is horrifying, so stopped reading them. Was checking for my boss in case there were any she needed to know about or look out for. Apparently persistent hiccups are common in high doses. I really hope I don’t get them or I think they’d send me round the bend!

Lesson learned – if I need this dose of methylpred. again, ask GP for an accompanying letter stating dose is correct!

Another new symptom from the relapse – shooting, burning pains down my right arm which are nerve related I think.

Bladder scan tomorrow. Exhausted after today.
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Bionic Woman

Was at the specialist today and he’s confirmed what I fearded – I’m currently having a relapse. It started a few days ago in earnest I think, before my LDN consultation and starting LDN, but I was hoping it was just a few ‘bad days’. In hindsight (20:20 as always) I think that was wishful thinking. Walking has been pretty bad today and having trouble lifting my left foot off of the ground when walking and as a result my toes have been dragging. The physio gave me a great electric muscle stimulator to help with this – two electrodes attached to different points on my leg and a pressure switch under my heel meaning and as soon as I lift my heel off the floor the little box I wear round my waist gives my nerves a little ‘shock’ which stimulates them and moves my foot and my toes come off the ground. It’s a very strange sensation to get used to and not the most comfortable (although not painful) and it’s bizarre having something else control my foot, but it’s helped my walking a lot today. Hopefully I won’t need it for too long. Although it is rather cool and makes me feel a little like the bionic woman. Again, childish as usual ; )

Had to get my blood taken again today unfortunately. Grrrrr. Perhaps my new Twitter name should be pincushion instead of miss! On the plus side, when I was weighed, I’d lost over half a stone since I last weighed myself a month or so ago. Quite a few people have commented on it lately but I didn’t think I’d lost that much.

There was talk of putting me on steroids next week when blood and urine tests come back to help with the relapse as I’m finding walking difficult and I’m worried my legs will buckle underneath me or I’ll fall. Needing the loo every 20 minutes and bad legs don’t provide for a terribly fun day. I’ve also been advised to start DMT (disease modifying treatment) as the number of relapses and frequency now suggest my MS has reached the stage where it requires this. Everyone has their own opinions on drugs and treatements, but for me personally I have LDN and its possibilities and feel Copaxone may complement it, but will speak to Dr T before going ahead. I’ve ruled out the interferons as the side effect lists put me off completely and I don’t feel they’re the best way to treat MS.

Not feeling terribly wonderful today so a short post, of which you’re no doubt thankful. LDN dose again tonight 🙂 Will keep you posted.

The First 24 Hours

My first 24 hours on LDN 😀 I’ve switched from being impatient for my consultation with Dr Tom to roll round to being impatient to have a few weeks of taking LDN under my belt to better judge how it’ll work for and with me. See a theme developing there?

My poor colleagues have been hearing nothing but LDN for weeks and weeks now, and it didn’t change today either! Everyone that asked how I am got an excited torrent unleashed upon them, telling them I’d taken my first dose and how much I was looking forward to my body getting used to the LDN and how it’ll react. I must admit I work with a great bunch of people – I’ve been very open about my MS and they’ve been very supportive asking me how I am and signing the online Scottish Parliament and Downing Street petitions for LDN trials on the NHS. I’m afraid I probably talk their ears off a bit about it all, but they suffer it well and I’m very grateful 🙂

Didn’t sleep much last night, but that was due to the excitement of finally having LDN. Terribly childish, I know! Afraid my symptoms have been pretty bad today – my legs haven’t wanted to co-operate and my walking’s been worse than normal. Cognitive abilities went downhill today too. I was fully prepared to feel worse for the first couple of days and expected it (then if I didn’t feel worse, it’d be a bonus). It may be just coincidence that I’m having a ‘bad day’ symptom wise on my first day of taking LDN as I am prone to bad days without any warning and it’s been a pretty stressful week, especially with not much sleep last night. All in all, I think there are a few factors to blame for my ‘bad day’ but I’m sure I’ll be right as rain very soon. Either way, I’m taking it in my stride – not literally though as my stride isn’t terribly elegant today 😉

Tai chi class was a bit of a struggle tonight with my legs being wobbly and more concentration than normal was needed to move through the form. It’s so relaxing and energising though and was well worth the extra effort. Over time it strengthens muscles and may help my legs. At the moment, I find it of great benefit in the morning to gently ease my stiff muscles into moving more freely. Helps relax me in the evening too. My hands tingle as I move through the form (well, what little I’ve learned so far!) and I feel good. It’s great to feel good and have nothing on my mind except relaxing and following the movements. I’m in my own little world for an hour. Some who know me may argue I’m in my own little world all of the time!!

On the plus side, I had no bizarre or disturbing dreams last night. They were vivid, but that’s nothing unusual for me. Also, I’ve had no side effects whatsoever except for the aforementioned ‘bad day’ and took my second dose before sitting down to tap this off on my laptop. The poor thing’s seen a lot more action than usual of late! All in all, I feel the good news definitely outweighs the bad news 😀

Another positive: on the MSRC website, there’s a new article on LDN in their Low Dose Naltrexone – Latest News section:  http://www.msrc.co.uk/index.cfm?fuseaction=show&pageid=1306&CFID=1938348&CFTOKEN=99797465 The article concludes from a preclinical investigation of mice given LDN that, “These results imply that endogenous opioids, evoked by treatment with LDN and acting in the rebound period from drug exposure, are inhibitory to the onset and progression of EAE, and suggest that clinical studies of LDN are merited in MS and possibly in other autoimmune disorders.”

Off to my MS specialist tomorrow morning. Afraid I’m feeling rather bolshie at the moment; my tolerance for the amount of tests and poking and prodding of my limbs I’m always subject to by my neuro etc is falling rapidly. I’m not sure how my specialist will take the news that I’m now on LDN. Something tells me it won’t go down too well. Tough! I’ll be my charming self as always though.
Anyway, off to catch up on the beauty sleep I missed last night 😉

Now My Story REALLY Begins……..

My LDN 😀

Limped off to the pharmacy during my lunch break today and collected my LDN. For some reason I assumed I’d be given it in tablet form, but it’s a liquid! Easy peasy to administer and I’m pretty sick of swallowing pills.

Having worked in a refractive surgery clinic for a few years in the past, I’m used to filling up syringes so it’s very easy (dexterity permitting).

And so it begins. Obviously I have nothing to report so far as I’ve only just taken my first dose around 30 minutes ago. Well, nothing to report except for the taste – it’s vile! It can taste as awful as it likes if it works though!!

Who could’ve thought the contents of this glass bottle have the potential to change my life if it lives up to the anecdotal evidence so far? I’m not getting my hopes up or looking for miracles, but any improvement in my quality of life would be amazing. I’ve been grinning from ear to ear all afternoon and I feel as though a weight has been lifted from my shoulders – I was worrying about if I’d be found suitable for LDN, if it’d ‘work’ for me, if I’d suffer another relapse in the meantime and generally felt sick to the back teeth of having MS and everything that comes with it. Rose-tinted-bespectacled as it may sound, I feel so much better now; I feel in control for the first time. What’ll be will be. MS rules my life day to day – it determines if I feel good or bad and if my body will co-operate or not on any particular day, even if I try not to let it, live positively and try not to let my MS get me down, it’s inevitable from time to time. I now have a weapon, as it were, to fight my MS.

I’ve always found it particularly strange that I refer to MS in the possessive – ‘my MS’. However, on an introspective day I realised it perhaps isn’t quite so strange after all; MS is different for every person who has it, and it presents itself in a multitude of different ways, so how MS presents with me is unique to me, therefore it’s ‘my MS’. That’s my logic for you! I suppose it also suggests a certain level of acceptance in that I’ve admitted it as mine. Perhaps I’ve been lucky in that as soon as I developed optic neuritis I knew it meant MS (due to the experience of working with ophthalmic surgeons) and accepted it without having to go through shock and distress first. I’ve no idea why I reacted like this, but I’m grateful nonetheless. This has afforded me time to formulate a plan of attack (not sure how to put that more succinctly).

Anyway, enough introspection for tonight! Apparently I have some very bizarre dreams to look forward to. Considering I already have weird dreams, I’ll probably have a dream akin to an acid trip!

Ever the optimist, I sense good things to come………..I’ll keep you posted!

Success!!

Just back from The Essential Health Clinic. Dr Tom’s started me on 1mg of LDN daily. Over the moon! 😀 It’s a low dose initially, and will be increased if required; it’s a bout finding the correct dose for each patient. Unfortunately the pharmacy was closed for the evening, but I’ll be off there at lunchtime tomorrow to collect my LDN. Can’t wait!! He’s also given me Barlean’s Ultra EPA Omega-3 capsules (lemonade flavour, how cool!), and Baseline am & Baseline pm. Hopefully I’ll be feeling an improvement soon.

Bloods were taken for my Uric Acid and Vit D levels. Vein in my hand blew again as usual and it’s a bit on the sore side now (it’s my only vein that provides blood easily and it always does that). Silly me forgot to have dinner before I went and needed a cuppa and a biscuit to bring my sugar up a bit. Terribly embarassing! Also opted for the Nitrotyrosine blood test (Tyscore Assay) which can detect disease activity in conditions such as MS: http://tyscore.com/

An article appeared in the Evening Times yesterday: PLEA TO FUND DRUG HELPING MS SUFFERES – http://www.eveningtimes.co.uk/news/display.var.2533158.0.0.php

Just a quick update; I’ll let you know how I get on as of tomorrow. Grinning like the Cheshire Cat. Woohoo!!

Blogs – LDN For Crohn’s and LDN On The NHS

A couple of blogs by Bob Thomson highlighting the use of LDN for Crohn’s and LDN on the NHS:

http://ldnonthenhs.blogspot.com/
http://ldnforcrohns.blogspot.com/

LDN has many uses; not just for MS. Here’s hoping word spreads even more. I must admit Bob’s blogs are a lot more accomplished than mine and ramble less 😉

Journey To Diagnosis

Realised that I’ve not actually written about how I came to be diagnosed with MS. When I was around two and a half, I had glandular fever which saw me hospitalised for a long time and almost killed me. I’ve had periods of good and bad health ever since. But until around the time I turned 20, I wasn’t experiencing MS symptoms (unless I didn’t notice them or ignored them!).

I began suffering from periods of debilitating fatigue and found heat difficult to tolerate; I’d become tired and my muscles would stiffen. I also began to find my muscles stiff in the morning and cramping at night. Trips to the loo became much more frequent; my bladder was ‘playing up’ as I call it. The strangest symptoms by far though were the tingling and numbness in the ring and pinky fingers of both hands (not at the same time) and having areas of my body go numb periodically – part of a leg, my foot, a small portion of my face- and patches of the skin on my legs feeling wet when they weren’t. Shopping was getting worse too – I’d find my arms shaking under the weight of a light bag and tremors staying for hours after I’d put them down. Was not happy about that one at all, being a bit of a shopaholic!!

Christmas a couple of years ago was a complete wash out – I was confined to bed with severe fatigue and pain from my hips down. I could make it to the bathroom and back, but that was it. I assumed I’d been overdoing things or something and didn’t bother my GP. Strange as it sounds,I thought I’d be discounted or told it was a virus and to have a few days in bed (like I’d have a choice!) and there were much more sick people in need of a Dr at that time of year than me. I class this as my first MS ‘attack’ as it fits the signs and my neuro made positive sounds and nodded when I described the ‘episode’. A few weeks later, I was feeling more like my old self, but as my gran remarked to me sometime later, I’ve never really been ‘right’ since – I’ve never felt fully well since, although I’m not terribly ill either. Although my left foot has never felt heat well again since that episode (tested the bath water and burnt my foot more than once because the water was too hot and didn’t feel it). Things progressed somewhat along this line, with a few more mild and short episodes. I also started to suffer from the ‘band’ or ‘hug’ but had absolutely no idea this was caused my MS until I talked to my Aunt’s partner who has MS and he told me what it was a few months ago.

Until October last year, I thought nothing more of the episode. Then I woke up one morning with severe pain in my left eye, reduced vision and poor colour saturation. Having worked in a refractive surgery clinic for a few years previously, I immediately thought: Optic Neuritis. I phoned an old colleague who’s an optometrist and she advised me to see my optometrist asap. The optometrist confirmed my suspicions and referred me to the hospital. By this point, I was fairly positive I had MS (not many other conditions cause Optic Neuritis, and I had none of them). It took a month to finally get to see the Opthalmologist at the hospital for some unknown reason with me being ill all the while, and by that time my ON had begun to reduce in severity. My GP prescribed me anticonvulsants in the meantime as he felt I was suffering from visual migraines (!!!!) and these only made the fatigue 10 times worse – I ended up in bed for a week. The vertigo that came with the ON lasted until a couple of months ago and wasn’t fun! The first Opthalmologist I was seen by asked me repeatedly about knocks to the head and headaches and didn’t listen to my symptoms. The second Opthalmologist was much more thorough and sent me for an MRI. Having listened to my symptoms, I guess she suspected MS. It was a very unusual experience, but I was so relaxed I almost fell asleep and the lovely radiologist gave me lots of rock music to listen to over the deafening noise of the MRI contraption. I could see my boobs in the mirror which lets you see outside the contraption which made me laugh! The results showed lesions on the brain (indicative of MS) and I was referred to the Neurologist.

The Neuro felt my symptoms all added up to MS and was 99% sure and diagnosed MS provisionally, but due to my age and also to rule out other conditions, he sent me for blood tests, evoked potential tests and the dreaded lumbar puncture (I had one when I had Glandular Fever and it was an horrific experience because I was so young and ill). The LP wasn’t exactly a barrel of laughs, but was better this time round. All the results confirmed MS and I was diagnosed RR this year. The evoked potential showed abnormal results for my left eye, and I now have glasses for reading and the laptop (permanent damage done by ON) and the colour saturation is also reduced in that eye, never to improve again. My glasses are pretty damn funky though 🙂

My employers have been great and sent me to an occupational health consultant who advised regular breaks at work, non-repetitive work and a desk fan for when the temperature rises which makes me uncomfortable. I also have the option to work from home a couple of days a week if my attacks get worse or more frequent and can go back to the occupational health consultant any time I feel my situation needs reviewed. My colleagues have been great and really supportive too – I decided to be completely open about my condition as it saved anyone any embarassment when I was asked what I’d done to my leg when I was limping. Saves explaining why I stop mid-sentence with a mind blank or mix up my words too!

Nowadays, my balance is pretty rubbish and I have good days and bad days, but it could be a lot worse 🙂 I get on with life as normally as I can, motorbiking (pillion) and all sorts of other nonsense. I make the most of the good days and work through the not so good. Eating healthily and gluten free and doing Tai Chi for the muscles. Off for my LDN consultation tomorrow. Wish me luck!!

Apologies for the length of the post, but once I started writing, it all just came out in a babble!

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.”

International LDN Awareness Week 19th – 25th October

Monday sees the start of International LDN Awareness Week. There’s a conference being held in America. The publicity so far has led to enquiries from some doctors wishing to join the LDN Research Trust’s list of prescribing doctors. It’s a great move forward and hopefully many more good things will come from this week. Leaflets are being dropped around Scotland (the country most affected worldwide by MS) and 6 counties in the UK also. If you haven’t already signed the petition and spread the word, please do so 🙂 Remember – LDN has the potential to possibly help other medical conditions; not just MS.

The LDN Research Trust is looking for volunteers around the world to help link all the countries and all the people taking LDN together to give a united voice. You can register interest by clicking on this link and clicking the ‘volunteer’ box: www.ldnresearchtrust.org/log_in.asp

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