Devic’s disease – what are the signs of Devic’s disease?

Devic's disease
Devic’s disease

Neuromyelitis optica (NMO), also known as Devic’s disease, is a rare neurological condition.

Neurological conditions are caused by disease or damage to the brain, spinal cord or nerves.

NMO most commonly affects the optic nerves and spinal cord, which can lead to optic neuritis and transverse myelitis (see below).

Some people may only experience optic neuritis or myelitis but may have the aquaporin-4 antibody (also see below). In such cases, a person is said to have an NMO spectrum disorder (NMOSD).

Each person with NMO will experience different symptoms and require individually tailored care and support.

Some of the main symptoms of NMO include:

muscle weakness – reduced strength in one or more muscles that can affect mobility

impaired eyesight

nerve pain – which can be a sharp, burning, shooting or numbing pain

spasms and increased muscle tone – from nerve damage that affects muscle control

bladder, bowel and sexual problems

NMO UK has more information about the symptoms of NMO.

Optic neuritis

Optic neuritis is inflammation of the nerve that leads from the eye to the brain. It causes a reduction or loss of vision, and can affect both eyes at the same time.

Other symptoms of optic neuritis include eye pain, which is usually made worse by movement, and reduced colour vision where colours may appear ‘washed out’ or less vivid than usual.

Transverse myelitis

Transverse myelitis is inflammation of the spinal cord. It causes weakness in the arms and legs which can range from a mild ‘heavy’ feeling in one limb, to complete paralysis in all four limbs.

It may cause numbness, tingling or burning below the affected area of the spinal cord and increased sensitivity to touch, cold and heat. There may also be tight and painful muscle contractions (known as tonic muscle spasms).

Relapses in NMO

An attack or relapse of NMO results in the nervous system becoming inflamed. The inflammation usually occurs in the optic nerve and spinal cord, and causes new symptoms or the recurrence of previous symptoms.

Less common symptoms of NMO can include unexplained nausea and vomiting, unexplained itching and tonic spasms (painful muscle contractions). In someone with known NMO, these symptoms may signify a new relapse.

NMO symptoms can range from mild to severe. In some cases, there may only be one attack of optic neuritis or transverse myelitis, with good recovery and no further relapses for a long time.

However, in severe cases, there can be a number of attacks which lead to disability. Disability occurs because the body can’t always fully recover from damage caused by the attacks on the spinal cord and optic nerve.

NMO UK has more information about NMO relapses.

What causes NMO?

NMO is an autoimmune condition, which means a person’s immune system (the body’s natural defence against illness and infection) reacts abnormally and attacks the body’s tissues and organs.

An antibody against a protein called aquaporin-4 is present in the blood of up to 80% of people with NMO.

Antibodies are proteins produced by the body to destroy disease-carrying organisms and toxins.

In NMO, the immune system attacks aquaporin-4 which damages the myelin sheath (the protective layer that surrounds nerve cells in the brain and spinal cord and helps transmit nerve signals).

Who’s affected by NMO?

NMO is a rare condition. In Europe, it’s estimated that there’s one case of NMO for every 100,000 people. In the UK, it’s thought that NMO affects less than 1,000 people.

NMO can affect anyone but it’s more common in women than men, with about four females being affected for every male.

Although the condition is thought to be more common in people of Asian and African descent, an increasing number of white (Caucasian) people are also being diagnosed.

Diagnosing NMO

It’s important that NMO is correctly diagnosed. It can sometimes be confused with multiple sclerosis, which also affects the brain and spinal cord and has similar symptoms. However, the treatment is different.

A neurology specialist will discuss your symptoms and medical history with you.

You’ll have a magnetic resonance imaging (MRI) scan of your brain and spinal cord. Some people with NMO (up to 60%) have lesions on their brain and spine, which are different to the lesions of someone with MS.

A blood sample will be taken and tested for aquaporin-4 antibodies.

A lumbar puncture is another test you may have. A sample of cerebrospinal fluid (CSF) is taken from the spine using a hollow needle that’s inserted into the lower part of the spine.

The fluid sample will be sent to a laboratory to be tested and to look for evidence of conditions affecting the brain, spinal cord or other parts of the nervous system.

In some cases of transverse myelitis, there’s an increase in the level of proteins or white cells.

NMO UK has more information about how NMO is diagnosed.

Treating NMO

There’s no cure for NMO, so treatment aims to manage attacks and symptoms, and prevent relapses.

Every person with NMO is affected differently and some may have much milder symptoms than others. However, early treatment is usually needed to prevent further episodes and permanent disability.

Medication is used to reduce nerve inflammation, suppress the immune system and treat any pain. Rehabilitation techniques, such as physiotherapy, can also help with any reduced mobility that the relapses cause.

At these centres, research is ongoing to find possible future treatments for NMO.

To be referred to one of these centres, a GP referral letter is all that’s needed. These specialist services are nationally funded, so GP practices won’t have any additional costs for referring.

NMO UK has more information about treatments for NMO.

Driving

Optic neuritis (inflammation of the optic nerve) could affect your ability to drive.

Multiple Sclerosis – what are the invisible symptoms of MS?

Invisible symptoms of multiple sclerosis
Invisible symptoms of multiple sclerosis

Just checking the web a few days ago I came across this fascinating video about the invisible symptoms of multiple sclerosis.

The discussion covers such areas as brain fog, optic neuritis and pain.

The video was produced by the ever excellent National MS Society, and Rosalind Kalb, PhD, is answering these important questions.

Age-Related Macular Degeneration and Low Vision Awareness Month – Eat your Greens


Kai-lan or Chinese broccoli
Kai-lan or Chinese broccoli
Yep that’s it! Our contribution to Age-Related Macular Degeneration and Low Vision Awareness Month.

Eat your greens.( Yes I know it is a bit of an odd picture for a post on vision loss but I wanted to attract your attention to the importance of diet).

It seems that eating more green leafy vegetables can help with age related Age-Related Macular Degeneration (AMD). It can help slow the progression of dry AMD and help prevent wet AMD according to the UK’s National Health Service.

So what actually is AMD apart from being the most common cause of vision loss in the over 50s? Last year PatientTalk.Org created a “user guide” for macular degeneration. We did this by interviewing Victoria O’Connor and Cathy Yelf (from the Macular Society). O’Connor was representing Boots the Opticians.

You can read the guide here!

So what is the point of this blog apart from raising awareness of AMD? Well quite simple. One of the barriers to actually eating more greens is that on their own they can be a bit boring.

So I’m asking my readers to share their favorite green leafy vegetable recipes in the comments section below. (If you run a food blog or site a link would be grand!)


So in the aid of full transparency (well you know what I mean) let me kick off with one of my favorites. If memory serves I found it originally in the Australian Women’s Weekly but it has been adapted a bit since then.

Baby Spinach Pesto

Makes loads

You need:-

1lb or 450g of baby spinach
2oz or 50g pecan nuts (or really any you like)
Olive oil (say two glugs)
2oz or 50 Pecorino cheese or any hard cheese such as Parmesan. Indeed there are some good vegan option these days.
Two closes of garlic crushed
Juice of a lemons

To prepare? Please the lot in your blender and wizz till you get the consistency you like. You might want to add the nuts during rather than the beginning to the wizzing.

Eat with pasta of on top of a baked eggplant or aubergine!

PS The picture above of Kai-lan or Chinese broccoli. I picked some up in Chinatown in london yesterday. Great steamed with oyster sauce!

PPS Can I also mention that green vegetables could assist with Diabetic retiopathy on Optic Neuritis which is an early symtom of multiple sclerosis.

National Eye Exam Month – Five great reasons to have an eye test!


Why you should have an Eye Exam?
Why you should have an Eye Exam?
As August is National Eye Exam Month we thought we would share with our readers five signs that you may need an eye test.

As a person with vision issues (I’m now both long and short sighted) I know the value of regular eye tests. Being in my late forties mean that my eyesight is changing fast. So regular check ups from my optician mean that I reduce otherwise significant vision problems.

So we thought we would share with you five great reasons to have an eye test!

a) Regular and unexplained headaches. This is often a sign of worsening vision. If this applies to you them we would suggest a trip to your optician.

b) Improve your performance at work at at school/college. Regular eye examinations help children from some learning difficulties especially with reading.

c) Certain condition such as multiple sclerosis (eg optic neuritis) are often first discovered by an optometrist . Others include high cholesterol, diabetes and glaucoma. As we know early detection means early intervention.

d) Find out if you need spectacles or maybe contact lenses.

e) Finally the eyes act as a window to overall health and wellbeing.

So This August when not get you eyes test!


Multiple Sclerosis Flare-Ups. What is a MS flare-up? What is your experience of a MS relapse? Please take part in our research and discussion blog!

Multiple Sclerosis Flare-Ups
Multiple Sclerosis Flare-Ups

I’ve been writing about and researching the stories of people with multiple sclerosis for nearly a decade.  In that time I’ve learnt that one of the really big issues is a multiple sclerosis flare-up.  Something which rightly concerns all of us in the MS community.

The aim of this blog is to allow our readers to share their experiences of an MS flare-up.  In particular we are really interested in how you dealt with the flare and what you do to try and prevent another MS flare-up occurring.

Of course flare-ups are a particularly big issue for people with relapsing remitting multiple sclerosis (RRMS).  Indeed the inclusion of relapsing in the name gives the game away somewhat!  It can also be called an exacerbation (which is a bit of an understatement) or simply an attack.

A MS flare up is defined as the appearance of a new symptom or the re-appearance of older symptoms.  This could involve an increase in fatigue, optic neuritis (http://patienttalk.org/?p=312), balancing problems or increased pain.

Timing is an important issue with a flare up.  Technically the symptoms must last for longer than 24 hours and be thirty days after your last exacerbation.  However sometimes the replace can last much longer – months in some cases.

It has been suggested that MS attacks can be triggered by infections or stress.  However research is still on going in this area.

Treatments are typically steroid based attempting to lower the immune system to prevent it from attacking the body.

As we said at the start of the blog we are particularly interested in your experience of MS flare ups.  It would be great if you could use the comments box below to share your experiences.  You may well wish to think about the following questions when formulating your answers:-

a)      Please can you describe your last replace?

b)      How long did it last?

c)       Do you know what triggered the exacerbation?

d)      How did you treat it and how successful was that treatment?

e)      How do you try and prevent a flare up occurring?

Obviously these are just guidelines so please feel free to add anything you think will be of interest to other readers.

Many thanks in advance.