Weeeeeeeeeee!

If ever you're planning an event involving people with MS, make sure the venue has lots of toilets. One thing at least 80% of us experience at some point is urinary symptoms - ones that often involve us spending a fair amount of our lives in the nearest loo.

Generally, people with MS will have either urgency or retention. Those of us who are particularly blessed experience both at once.

(Sorry, couldn't resist this topical item. Feel free to scream if you're all Royal Wedding-ed out)

Urinary urgency is a sudden compelling urge to urinate. Imagine you're at a shopping mall, say 5 minutes walk from the toilets, and abruptly you have to wee. Now. This instant. You can't even walk, because you can't separate your thighs in case of accidents. Urgency is often associated with incontinence, frequent weeing, having to get up at night to wee, and institial cystitis.

This is the situation that has led to me waxing lyrical in the past along the lines of "If I lie on my back I look like an ornamental fountain...all I need is the laser light show and it's complete!"

The MS Society has produced an assistance card which can be shown in shops, explaining that the person has MS, so they can ask for help such as the use of staff toilets. This is particularly useful as so many of the symptoms of MS are invisible.

If left untreated, urgency issues can lead to repeated urinary and bladder infections, and even kidney damage; personal hygience problems; and the disruption of normal activities, leading to isolation.

Urgency can be helped by the reduction of caffeine in the diet. Many people with MS feel, however, that given the payoff between the energising effects of caffeine and the bad effects on the bladder, they'll choose the energy. Other dietary suggestions include cuttng down on the total amount of fluid drunk, and having a maximum of one alcoholic drink each day.

Behavioural measures are also possible, such as bladder retraining, where the idea is to increase the time between visits to the toilet by gradual steps. A more physical method is pelvic floor exercises (Kegel exercises) such as are taught to pregnant women. The pelvic floor muscles relax as the bladder contracts in order to let urine out. The stronger they are, the less incontinence should occur. As a beneficial side-effect, sex should also get better!

Here is a class doing their pelvic floor exercises in unison. Or possibly that's not what they're doing at all...

Various medications are available to help with urgency. Currently the most widely used seems to be solifenacin (Vesicare), which reduces spasms in the bladder and urinary tract, but different meds suit different people, and several others are around.

A more recent treatment is botox. As we know from its use in cosmetic surgery to reduce wrinkles, botox makes muscles weaken or become paralysed. When botox is injected into a number of sites in the bladder, the spasms that cause urgency and frequency usually reduce, often for as long as six months following each treatment.

In other cases, a catheter or surgery may be used. The most common type of catheter for people with MS is a suprapubic catheter, which enters the bladder through a cut in the abdomen just below the navel.

For women, a pessary can be placed inside the vagina, touching the cervix. The pessary presses through the vaginal wall, supporting the urethra and pinching it closed to help reduce the risk of stress incontinence (incontinence when coughing, sneezing etc). If nothing else works, surgery may be considered as a final resort. The surgery seeks to lift the urethra and/or bladder back into the normal position - so clearly are of no use if they have not prolapsed.

A less established treatment is sacral nerve stimulation, where a surgically implanted device stimulates the sacral nerves at the very base of the spine with mild electrical pulses. The sacral nerves control the bladder and the muscles related to urinary function.

The other main urinary problem experienced by people with MS is retention, not emptying completely when you wee. The situation now is that you're in that shopping centre, you go to the loo, but you feel like there's still some in there when you've done all you can. What's happening here is that the bladder muscles are stopping contracting before the bladder is empty.

Possibilities to help retention include:

• smooth, even, stroking pressure from the navel downwards
• stimulation just above the pubic area (I said ABOVE) using a vibration device or buzzer. You can buy special bladder stimulators, but many of us have something suitable around the house.

• Intermittent self-catherisation involves inserting a catheter into the urethra at regular intervals during the day to drain off urine. The procedure should be taught by a speciaist nurse.
• If intermittent self-catherisation is not possible, a permanent catheter may be decided upon. As mentioned above, these are most commonly suprapubic.

Retention often goes hand in hand with hesitancy - and as its shy-sounding name suggests, hesitancy refers to being backwards in coming forwards: not being able to start weeing. There are several possible causes of hesitancy, including lack of the reflex to urinate and poor muscle coordination between the bladder and the urethra. Treatment for hesitancy is similar to that for retention.

Unfortunately, retention is a common side-effect of many of the medications used for incontinence - meaning that some of us end up with the double-whammy of incontinence and retention. This time, back in the shopping centre, desperate to wee, you've made it to the toilet....but you can't go, or you can't fully empty, despite how desperate you are. Bundle of laughs, trust me.

Urinary problems are something that can't be cured. We can sometimes take medications or wear bits of kit that help a bit. Like so much of MS though, in the end, we've got to learn to live with and around it.

While writing this, I have been to the loo 6 times and wet myself twice. Just thought I'd share that with the room...

Dr Careworker

It's good that increasingly, qualifications are required of careworkers. I don't recall hearing that they need a medical degree though. So you can imagine my surprise, yet again, at a carer telling me that I'm "lucky" to have "mild" MS. (I told her the MS bit. She didn't have to work that out.)

They apparently come to this conclusion because I can still walk - more of a shuffle, really, hanging on to furniture and bumping off walls, but walk - whereas other people with MS they look after can't. There are four possible replies I can think of to this, when I cool down enough:

1. When did you finish your medical training then?
2. When someone has "mild" MS, you wouldn't know by looking at them that they have it.
3. If I had "mild" MS, I wouldn't have a care package paid for by Social Services. Paying your wages, m'dear.
4. The symptoms of MS aren't just about mobility. Everyone with MS has a different collection of symptoms, progressing at different rates.

With today's careworker (didn't you just know this rant had come from somewhere?) I used number 4. Sat her down and talked her through all my symptoms. At length and in detail. All complete news to her.

Don't you think it would be useful if home careworkers got at least some training about the conditions they're likely to come across in their work? MS is the most common acquired neurological disability in young adults, after all - it's hardly unheard of. I forgot to tell her that stress makes MS worse, but it does!

My life in one day #disabilitynormal #fitforwork #spoonie

I've posted before about individual symptoms of my MS - sleep problems, fatigue and so on. The idea of this post is to describe a "typical" day, to show what my life as someone with MS is like. I'm not describing any one particular day, but I'll try hard not to exaggerate and make it some sort of extreme horror show.

My sleep pattern is pretty messed up, so I wake up at 4am. I know I won't get back to sleep for a while, so I get out of bed using my bed lever to sit upright, swing my legs round and stand up. I shuffle towards the toilet, accidentally kicking the cat on the way (he will sit where I'm about to be!) As a result, I lose my balance and collide with the bathroom door. Fortunately only slight bruising on my arm and shoulder.

Having completed my ablutions, I make a drink, only scalding my hand a bit this time, then go through to the living room and curl up on the sofa. I now have a pretty comprehensive knowledge of very early morning TV. In fact, I'm thinking of making it my specialist subject on Mastermind. To my shame, there's a pretty dreadful reality show called Guilty! I've become fairly addicted to.

After a couple of hours, I conk out again. At least I assume I do - I have no knowledge of the process. It's like someone slugs me with a baseball bat. The only way I know roughly when it happens is because of what TV I remember.

I wake up again around 11. Well, I say wake up - it's Dawn of the Dead stuff for about the first half hour. Not only can I not do whole sentences, but words that seem quite comprehensible inside my head come out as grunts and mumbles. If I manage to stay awake, I can start moving around, getting off the sofa, that kind of thing.

Next to me is a cup of cold coffee. This means that while I was asleep, my carer has let herself in, done her work, and gone. It's a Monday, so the work included hoovering all around me without me stirring. When I sleep, I sleep! I'm reminded of the time I fell asleep in a lobby in my wheelchair, and woke up to find myself in a hoovered lobby, in a wheelchair-shaped dirty spot.

By this time, the cat is demanding attention. He's a breed called an Abyssinian. They're the ones who were worshipped as gods in Ancient Egypt. Unfortunately, someone once told him he's a god, and ever since he's demanded worship as his due even more than most cats! He also has both hollow legs and a hollow tail. I feel like I spend most of my day trailing back and forward between the sofa and either the kitchen or the door.

One o'clock, and the carer comes back for my shower. No, no photos! Showers bring another level of exhaustion, though. A lot of people with MS (including me) find that their symptoms are made worse by heat, especially steamy heat. So really, baths and showers aren't ideal, while clearly they're great for keeping you clean.

I was hoping to do some reading today, but my brain decides not to cooperate. Instead I spend lunchtime and the afternoon basically staring into space. I can't even concentrate on Jeremy Kyle. Finally, about 4, I feel like I can do a bit of work, so I do some studying.

When I took ill with what turned out to be MS, I was in the later stages of a BSc in Health Studies. I managed to complete it with first class honours. I was determined to carry on an academic career as far as I could, and registered for a PhD. I was only about 6 months from completion when I had to drop out - the fatigue and cognitive (thinking) effects of the MS had just got too bad.

I still have the studying bug though, and I've registered to do a first year undergraduate short course, in a new topic area for me. I'll see how it goes. I don't want to lose touch with studying completely, but I also don't want to overdo things. That would just make things even worse.

Time for food, and I stick a ready meal in the microwave. I very rarely have the energy to do anything more than that: even when I do, it would be something like cheese on toast, or an omelette. Some days I don't even have the energy for the ready meal option, and have to get a takeaway delivered.

After my meal...dammit, I fall asleep again, and miss my favourite television. (It's Monday, so yay, Glee) (Yes yes, I know, don't judge me)

When I wake up again, it takes me a while to work out the time - could be any time from 8 to midnight. I eventually realise that it's about 9, and there's still plenty of time to go online and chat to my online MS friends. In fact, since I've just been asleep, I don't want to go to bed too early, in the hope I might sleep a bit longer overnight.

Online I go, to the chatroom at the wonderful Jooly's Joint, and to chat to Eggy, Mel and Sarah (strict alphabetical order girls!) on MSN Messenger. About 11.30, I say goodnight, feed the cat for the final time, take my final vast dosage of medication (ah yes, I haven't mentioned that) and head off to bed, still stiff and in pain.

So that's a fairly typical day. #disabilitynormal, in fact, for a #spoonie. I'm still waiting for the forms for my Employment and Support Allowance (ESA) review, but while I'm reasonably sure they won't put me on Jobseeker's Allowance, it's quite possible I'll be put in the Work Related Activity group, and have to undertake activities "with a view" to working in the future. In view of all the above, do you know anyone who would employ me? Really? I'd love to work again, but....really?

Unreality TV - Medicine in Medical Dramas

Immediately before I took poorly and had to give up work, I was teaching first aid and basic life support - CPR and the like. I spent what seemed like the best years of my life trying to stop people doing chest compressions with their elbows bent and the arms doing the work - they should be done with elbows straight, and the body rocking from the hips to provide the pressure.

The reason for the problem? That's how they'd seen it done in medical dramas on the telly. And my street cred clearly wasn't high, compared to Charlie Fairhead's...

There are loads and loads of medical dramas on television. And some more loads. Trying to think and write about them all, and how accurately they depict medicine to the general public, would give scope for a PhD thesis (funding, anyone??) so I'm just going to talk about the ones I watch regularly - Casualty, Holby City and House.

The most overtly "heavy medicine" comes in House. Every week, there's an obscure illness, diagnosed through analysing symptoms, through blood tests, biopsies and scans - and of course through the genius of the eponymous Dr House.

It's a bit unrealistic, compared to the life of a real hospital doctor, though. Most of the time, House and his "team" of four or five more junior doctors seem to have only one patient. Very occasionally, House will see out-patients in clinic - but this is depicted more as a punishment for one of his frequent misdemeanours than anything else.

House's team also seem to be the ultimate multi-skilled staff. As "diagnosticians", they do everything from radiological procedures to neurosurgery. Again, very unlike real life, where different people are highly skilled in these different areas.

Casualty and Holby City are linked programmes, both taking place in Holby General Hospital. Medicine is far less central to the plotlines than in House, though still important. Casualty includes a lot of location filming, with plots leading up to fairly predictable accidents or illnesses. The end of each series inevitably features a major incident such as an explosion, a major car crash, or, in one series, a gun siege in the department. Holby City is set in two of the wards of the same hospital.

In each programme, the staff of the department discuss their personal lives in the most lurid detail as they work - often literally over their patient's abdomen. I don't believe this to be professional conduct: it's certainly not something I've ever experienced, though of course I don't know what's gone on when I've been unconscious!

Then there's the CPR - as I mentioned at the beginning of this post. As you'll see in the photo above, when you're doing CPR for real, your arms are straight (though I'd like to see her more directly above the patient. She's going to break ribs doing it from there. However...)

Thing is, in some of the medical dramas, they do it with their elbows bent. The reason is that they're doing it on real people, actors, and they don't want to put any pressure on their hearts - it can be dangerous, unless they really need chest compressions. The bendy-elbows thing is to look impressive for the cameras without actually putting any pressure on the heart.

So, medicine in medical dramas. The depiction is better than it used to be, certainly - but it's still not a true depiction of medicine. Do we want it to be? I'm not sure we do. An hour's programme of a doctor filling in paperwork might not be the most riveting programme ever....

My work life story #fitforwork

This post is part of The Broken of Britain's #fitforwork campaign.

I'm renowned among my friends for the variety of jobs(/careers?) I've had. Part, though not all, of that has been because of my health - having to give up on jobs I was doing and find something else I'm able to do.

As a child I was as healthy as most kids, apart from a succession of severe ENT infections. When I was 15 I developed major epilepsy (grand mal fits). Tests didn't show any cause, but fortunately it could be controlled by medication. The first medication turned me into a zombie, and the second would subsequently turn out to have made me infertile, but yeah, whatever.

In my final year of university, when I'd be aged about 21 or 22, I became clinically depressed for the first time. The Student Health Centre were sympathetic, but offered no treatment. They suggested I should speak to my professor, who looked at me like I'd suddenly sprouted an extra limb or a third eye or something! He clearly had no idea how to deal with this situation.

So, finally into the world of work, and already with a few long-term illlnesses hanging round my neck like albatrosses. I first worked in retailing, and was unfortunate enough to suffer bullying from my immediate manager (a complicated situation, to do with his partner running the store that was my immediate competitor in the company). The stress obviously didn't help my health status, and I ended up with irritable bowel syndrome to add to the rest. Finally, I got made redundant from that job when the shop was closed down.

After a few months of unemployment I was taken on by the civil service. I discovered that lightning can strike in the same place twice, as again I was a victim of bullying by my boss. Looking back with hindsight, I can see that he was taking out his own insecurities on me - but that didn't help me at the time. In fact, I subsequently discovered that his bullying was well known by head office, but it was "easier" to leave him where he was than do something about it.

It was as a result of this bullying that I finally had a complete nervous breakdown, and was discovered crying in my office by a colleague. I had been sitting all morning with 6 files, trying to decide which to deal with first, and completely unable to. After I had been off sick for over a year with anxiety and depression, I was offered ill health retirement.

So. That was me, aged 37. A pensioner. And I didn't want to be, you know? I mean, the money's welcome and all, I don't refuse it, but I'd far rather be doing something. So I started trying to make a bit of money out of what had previously been a hobby - teaching first aid. I taught round various schools, churches, synagogues, PTAs, and so on.

After a couple of years, I saw a job advertised by a charity for a part-time training officer - teaching first aid and AED (defibrillation - you know, the electric shock machine for the heart?) and I got that. I'd done that for 18 months when suddenly I started passing out all over the place. I even got carted off to A&E once, when I did it 200 miles from home. And even when I was actually conscious, I was exhausted...and bits of me really, really hurt...and I had spasms in my muscles...and I was weeing all the time...and and and...

It took two years, but finally I got a diagnosis of multiple sclerosis. I now don't get out much, because of fatigue. I use a wheelchair when my walking's bad or I have more than a few steps to go. I still don't want to be sitting around. What I'd like to be is a writer. Anyone want a semi-comatose, housebound, ouchie, permanently on the loo writer? Goawn!

To sleep, perchance to...sleep some more

One thing many people with MS (and other spoonie conditions) rapidly become familiar (/obsessed) with is sleep. Too much of it, too little of it, more or less the "normal" amount but at the wrong times of day...

So, in this post I'm going to be describing some of the sleep problems that can affect people with MS, as well as a common sleep disorder, not specific to MS, that can potentially make some MS symptoms worse.

Hypersomnia is excessive sleepiness - where a person has problems staying awake during the day. People with hypersomnia can fall asleep at any time, for instance when they are at work or while driving. They may also have other sleep-related problems, such as lack of energy or lack of ability to think clearly. 

Causes of hypersomnia include neurological diseases like multiple sclerosis, sleep disorders like narcolepsy and sleep apnoea (see below), sleep deprivation, head injury, being overweight, and some prescription drugs. Treatments include stimulants and newer drugs such as Provigil.

Insomnia is characterised by persistent difficulty falling and/or staying asleep, or sleep of a poor quality. There are many possible causes, including neurological disorders, pain, disturbances of the circadian rhythm such as shift work and jet lag, restless leg syndrome, and use of stimulants including certain medications and caffeine.

The first line of long-term treatment should be non-pharmacological, as resistance can build up quickly to medications. In addition, dependence can occur, with rebound withdrawal effects when the medication is stopped. One useful technique is sleep hygiene. This is defined as:

...the controlling of all behavioural and environmental factors that precede sleep and may interfere with sleep.

 Sleep hygiene involves factors relating to:

• Your personal habits: eg do not eat before bed, do not drink alcohol before bed, try to avoid napping during the day, no caffeine in the 4-6 hours before bed
• Your sleeping environment: eg block out distracting noises and as much light as possible, the bed is for sleep and sex only
• Getting ready for bed: eg establish a pre-sleep ritual, practise relaxation techniques
• Getting up in the middle of the night: if not able to get back to sleep within about 15-20 minutes, get up and leave the bedroom - read, do some quiet activity, have a bath. Do not watch TV, do office work or housework.
• Television: TV is an engaging medium. Don't try to fall asleep with it on. Radio is generally less engaging, and it shouldn't be a problem to try to fall asleep with that on.

 It's only if "behavioural" techniques like this do not work, that medications like zolpidem (Stilnoct, Ambien) should be considered.

Sleep reversal is like permanent jetlag. It occurs when people's sleep patterns have been disrupted - they sleep at inappropriate times, and can't sleep when they should. Help suggestions include many of the sleep hygiene suggestions above: not to eat, drink or smoke too close to bedtime; to create a sleep-conducive environment; and to create a relaxing environment, for instance by having a bath before bed. Other suggestions include gradually advancing the sleep schedule by going to bed and waking up 15 or 20 minutes earlier each day.

Finally, a sleep disorder that is not specific to MS, but is surprisingly common, and could potentially make MS symptoms worse. Sleep apnoea is a condition that causes interrupted breathing during sleep, due to the muscles and soft tissues of the airway relaxing sufficiently to close the airway and stop breathing. It's thought that 4% of men and 2% of women have sleep apnoea.

During sleep, someone with sleep apnoea can have repeated interruptions to their breathing. Each time, the reduction of oxygen causes them to come out of deep sleep and into a lighter phase of sleep, or into a brief period of wakefulness. These interruptions may in some cases happen more than once per minute.

These repeated interruptions to sleep can make the person with sleep apnoea feel very tired during the day. They will usually have no memory of the periods of breathlessness.

Most people with sleep apnoea snore very loudly.Their breathing during sleep may be noisy and laboured, interrupted by gasping and snorting with each episode of apnoea. In fact, it is often diagnosed because their partner comments on this pattern! Other symptoms include feeling very sleepy during the day, poor memory and concentration, anxiety and depression.

If sleep apnoea is suspected, it is likely that the person will be asked to undergo testing at a sleep centre - a specialist clinic or hospital department helping people with sleep disorders. There, technicians will place a number of sensors on the patient's body to assess them while they sleep.

Once sleep apnoea is confirmed, mild cases can usually be controlled by lifestyle changes such as losing weight, stopping smoking, and limiting alcohol consumption. Moderate to severe cases may need to be treated using continuous positive airway pressure (CPAP), which involves using breathing apparatus to assist with the breathing while asleep.

So, if someone with MS (or other spoonieness) also had sleep apnoea, treating their sleep apnoea could help with some of the symptoms of their MS - sleepiness, anxiety, depression, and so on.

I should stress that as far as I'm aware there's been no research into any link between MS and sleep apnoea. This is just a little pet hobbyhorse of mine!

I don't think there's anything around that can completely "cure" our sleep problems. There are certainly things that can help with them though. It's all about team-work between us and our healthcare professionals!

MS research roundup April 2011 Part 2

This is part 2 of this month's research roundup, dealing with treatments. Part 1, dealing with risk factors, links with other conditions, diagnosis and symptoms, is here.

First of all, American researchers have found that exercise appears to protect the brains of people with MS. Yes I know, it makes me want to go and have a little lie down too! The statistics show though that participants with higher levels of fitness had greater cognitive power, higher levels of grey matter (which is linked to brain processing skills), and less damage in areas of the brain where MS deterioration occurs.

Now, call me a cynic (You're a cynic, FM!) but I'd like to see some long-term data on this one. Could it be that those with less brain damage etc were also those who were more able to do exercise? So therefore the causality is the other way round from what they're suggesting?

English researchers have been comparing an existing treatment, interferon beta 1-a, against a new treatment, Campath (alemtuzumab). They gave one or the other to people with early, active RRMS. After 3 years, over 70% of those on Campath were disease-free compared to over 40% of those on interferon. Over half of those on Campath found their level of disability lessened. Campath sounds like an extremely promising treatment.

While we're waiting to see if Campath and other treatments are approved or not, most people with RRMS remain on one or other of the self-injected medications. When someone is on interferon, and their disease suddenly becomes more active, it may be decided that they should go on a higher dose. Italian doctors researched whether going on to a higher dose was beneficial or not. In the majority of cases, they found that increasing the dose of interferon had no effect on number of relapses or disability progression. Where the switch was only on the basis of MRI activity, there was a lower risk of further relapses, but the researchers did not feel this merited a general increase based on MRIs, until more research is done.

Cladribine is a new oral disease modifying treatment for MS. British researchers used various clinical and MRI measurements to show that it was more effective in patients with RRMS than was a placebo. Around 45% of those taking cladribine were disease-free after 96 weeks, compared to 16% of those taking the placebo.

The European Medicines Agency has recommended against the licensing of cladribine, because it does not believe that the benefits outweigh the risks. There were some cancer cases during the trials, and the drug suppresses the immune system and makes the patient vulnerable to infections. The manufacturers, Merck Serono, are appealing against the decision.

Now two pieces of stem cell research.

One of the most difficult things in stem cell research is learning how to make a cell change from one thing to another. Our stem cells do this all the time, changing into all the many and varied tissues of our body. A group of American researchers have managed to change cells from a pre-implantation mouse embryo into epiblast cells, one of the types found in an embryo very soon after implantation.

A group of Greek researchers are following a different route. Called hemopoietic stem cell transplant, it involves taking bone marrow stem cells from the patient then transplanting them back in after a course of chemotherapy to kill off their own immune system - effectively "rebooting" their immune system. This is a major procedure, and not for everyone with MS. All of the 35 participants were severely disabled by MS and had aggressive disease, and two of them died as a result of the procedure: however, 25% of them were no worse 15 years later, as would have been expected.

Two recent studies, in the USA and Argentina, have reported on the results of treating people with MS with parasitic worms called helminths. The theory is that this relatively harmless treatment will alter immune activity. Because auto-immune conditions are less common in areas with low standards of hygiene and high levels of infectious disease, one theory - the hygiene hypothesis - suggests that the lack of exposure to infectious agents at early ages in the developed world can lead to allergies and other auto-immune conditions.

The American researchers gave their participants helminth eggs to drink. Other than short-term gastrointenstinal problems, there were no ill-effects. Beneficial trends were seen in MRI and immune system activity. The Argentinian study was a follow-up three years after participants originally drank the eggs. They found that infected individuals had fewer relapses, minimal changes in disability scores, and lower MRI activity. Some participants were reporting increased gastrointestinal symptoms: they were given anti-parasitic treatment, after which their scores increased to those of the participants who had not been treated.

A recent British trial confirms that cannabinoid-based Sativex can improve the symptoms of spasticity. Almost half of patients achieved an improvement of 20% or more, when taking Sativex with their existing antispasmodic medication.

Many people who are not yet able to get Sativex continue to smoke marijuana, to get the same effect. Canadian researchers have confirmed what we already knew: that cannabis users perform more poorly than non-users in terms of attention, speed of thinking, executive function, and visual perception of spatial relationship between objects. They were also more likely to be classified as globally cognitively impaired, which is a concern, given that 40-60% of people with MS are cognitively impaired to begin with.

So, that's it for April. What will next month bring?

MS research roundup April 2011 Part 1

Well...SO many interesting bits of research this month, I've decided to split this roundup into two parts. Part 1 (this bit) deals with risk factors for MS, links between MS and other conditions, diagnosis and symptoms of MS, and some basic science. Part 2, here, will deal with treatments.

There is yet more evidence of a link between vitamin D and MS. American researchers have found that disease risk and severity is linked to levels of vitamin D3. Levels of D3 are mainly dependent on exposure to sunlight.

Meanwhile, Canadian researchers have been investigating the role of Epstein-Barr virus in MS. Epstein-Barr is the virus that causes glandular fever (mononucleosis). It was already known that people with MS were more likely to have antibodies to Epstein-Barr virus than healthy people. These researchers found that Epstein-Barr can infect the cells forming the boundary between the blood and the brain, allowing cells of the immune system to enter the brain and causing inflammation of brain cells.

Spanish researchers have added to the increasing evidence that people with one auto-immune condition are more likely to have others, by showing that people with MS are more likely also to have coeliac disease. The prevalence among MS patients was 5-10 times that among the general population. They suggest that a gluten-free diet could help not only the intestinal symptoms but also neurological ones.

The complement system is part of the immune system. It consists of a number of small proteins which when stimulated, split to release an amplifying cascade of further cleavages. The end result is massive amplification of the response and activation of the cell-killing membrane attack complex. Over 25 proteins and protein fragments are part of the complement system. Chinese researchers found 7 proteins at abnormal levels in the CSF of people with MS. They suggest that this could be used as a test for the presence of MS, and could possibly give clues as to the cause.

Tests of eye movement are sometimes used to test for diseases such as MS and schizophrenia. For instance saccades, or very fast eye movements, have always been assumed to occur in only about 3% of the population. In this British research, British partipants' eye movements were compared with Chinese. While as expected only 3% of the British particicpants had the fast eye movement pattern, 30% of the Chinese group did. This could be a cultural difference, or down to basic differences in brain structure. Existing maps of the brain are largely based on European populations. Further research is now being done.

Pseudobulbar affect, (PBA) also known as emotional lability or emotional incontinence, is characterised by involuntary or uncontrollable laughing or crying. It may involve laughing or crying at inappropriate times, such as laughing at a funeral or crying at a funny movie. Because of the crying, PBA is often misdiagnosed as depression and so goes unrecognised. Conditions it can happen in include MS, motor neuron disease (ALS / Lou Gehrig's disease), stroke, traumatic brain injury, and Alzheimer's disease.

The MS Association of America conducted a survey. Almost 20% of those who responded stated that episodes of involuntary crying or laughing happened "frequently" or "often", and 48% of those reporting PBA symptoms found them burdensome. It's important that we recognise if this common, but relatively unknown symptom is affecting us.

Scottish scientists believe they have found a maintenance protein that helps keep nerve fibres that transmit messages in the brain keep working smoothly. The protein, Nfasc186, is vital for maintaining the health and function of the axon - the segment of the nerve fibre that controls transmission of messages. The researchers claim that their work could help with conditions like MS, epilepsy, stroke and dementia.

American researchers have used a cancer drug to block the development of a condition similar to MS in mice bred to develop it. They realised that a molecule called CXCL12 helps to pull the immune system cells into the brain from the bloodstream. A receptor called CXCR7 binds to CXCL12 and helps it operate. The cancer drug was being developed as a CXCR7 blocker. When given to mice with the MS model, immune cells could get no further than the meninges.

A group of German researchers believe that the inflammation of MS causes what they call "focal axonal degeneration" (FAD). FAD can occur while the myelin surrounding the axon is still intact. In the mouse model of MS, this process was reversible if caught early enough, so the researchers suggest it could be a potential target for a therapeutic intervention.

Part 2 of this post deals with research into treatments. It's here.