That moment when you just have to sit down!

You have to laugh don’t you! I started writing this last week during the heatwave & completely forgot all about it!

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That moment when you just have to sit down

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My MS really doesn’t like this English weather!

It’s been another beautiful day and I’ve unfortunately been a very busy girly again!
It would have been so nice to have sat in my egg chair and enjoyed the sun especially as the humidity wasn’t too bad this morning!

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That wasn’t planned for me today though!
I knew I wouldn’t be able to go back to Pilates just yet after passing out during Wednesdays class! So I had booked our 12 year old Labrador Olivia (Ollie for short) in at the vets for further investigation into a lingering UTI (Urinary tract infection)
At least by booking this appointment I knew I definitely couldn’t go to pilates, this was a very important appointment!

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I also had to go into town today to collect some clothes Deb had ordered & pay money into the bank. No worries, in & out in no time

Famous last words! The que in the bank was horrendous, I knew I wouldn’t be able to stand for too long and so as usual I managed to find something solid I could lean on whilst I waited.
It was so warm in there though! I could feel my temperature rising so I grabbed my little fan out of my bag! That did the job! I love the summer but I wish my MS did too!

Off to collect Debs clothes, the shop in needed is in a Shopping Mall, oh no!  The Shopping Mall has a glass rough! I knew just what that meant!
I could feel the heat from the sun beaming down on me through the glass! The more I walked & the weaker my legs felt!

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Oh here it comes! It’s ‘the’ MS walk, you know the one that leaves people wondering if you’ve had one to many Brandys!

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Weaker & weaker, I’ll be crawling soon! I’ve passed the benches & the cafe’s! The shop I need is closer than turning back! Come on legs, don’t let me down!


The automatic doors open & I could feel the coolness from the AC!

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The shop assistant welcomed me & I explained I was there for a collection but I also wanted to browse. I grabbed a handful of clothes & headed to the changing room! I knew this place well & knew there would be a seat in that changing room! That’s all I wanted, to sit down!

So much better! I smiled & realised the clothes I had grabbed were actually a size too small!
Then I remembered what I received last night!…

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Don’t be suprised if I don’t cheer for the heat of the sun

Constraints of my MS

HEAT

COPYRIGHT Vix quote

Most MS’rs, myself number 1 on the list, just can’t stand the heat of the sun! 

MS & HEAT

Don’t get me wrong, I love to see the sun! Everyone smiles when the sun comes out to play but MS generally HATES heat of any kind!
Heat for me brings out all & I mean all of my symptoms worse than ever!

MS & Heat

It makes me sluggish, it enhances my fatigue ten fold, it enhances my pain & because my fatigue is worse that means I can’t cope with my pain and so pain appears worse!
It gives me eye fatigue! Yep, eye fatigue which then means my vision suffers!
And if you hadn’t guessed, it makes me cranky!

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I’m sorry I’m negative about the sunshine but these things you need to know!

When the sun shines all I really want to do is curl up into a ball & sleep in the coolest place I can find!

So many people get so happy to see the sun & feel it’s heat! Please don’t be surprised if I don’t smile as much when it’s hot outside! Just know that I feel your love for the sun & wish I could be as enthusiastic about it as you but I just can’t!

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I’ve come up with some pictures to help show people how MS affects my vision, please remember though that everyone’s MS is different.

An example of someone who has normal vision looking into my back garden or ‘Fugly Manor Nature Reserve’ 

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An example of my normal vision after damage left from optic neuritis 

Vix vision of reserve

An example of my vision when it’s too hot for me

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Uhthoff’s phenomenon

Uhthoff’s phenomenon or Uhthoff’s sign is the temporary worsening of symptoms – most often visual symptoms but sometimes motor or sensory – caused by an increase in temperature. The visual symptoms may present as double vision, sharpness of vision, or black spots in the eyes.

The symptom takes its name from Wilhelm Uhthoff, a German neuro-opthamologist, who first described it in 1890

An example of what follows if I continue to get too hot!

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Dizziness and vertigo

Dizziness or lightheadness is a common symptom of multiple sclerosis. If the sensation is more severe and gives the feeling that surroundings are spinning, it is referred to as vertigo.

In MS, these symptoms are caused by damage to areas that co-ordinate perception and response to visual and spatial information.

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Sun kissed

Like mother like daughter on this subject!

I am the first one to tell someone how silly they are for not looking after themselves in the sun!

It doesn’t matter what country you are in to apply sun cream, the sun still burns in the UK!

You don’t even have to be sun-bathing to apply sun cream, the sun still burns when you are doing some gardening!

Remembering to apply water proof sun cream is just as important too, the sun still burns when you are in the sea!

The thing to remember is the sun will burn you no matter what country you are in!

The sun doesn’t even care if you are on holiday or not, if it sees you out even just taking your lunch break outside because ‘the sun has got his hat on’ He won’t take off his hat to greet you, no, he’ll get straight to work with his powerful UV rays and he’ll fry you to a crisp!

I recently read an article about people using the sun to burn pictures onto their body

Actor Vin Diesel from the Fast & Furious films hails this craze as ‘glorious’ on his Twitter account he says “Sunburnt art is a Real Thing, and it’s Glorious”

I for one cannot see how letting the sun do this to your body is glorious when skin cancer is one of the most common cancers in the world!

There are more than 100,000 new cases of non-melanoma skin cancer every year in the UK!

Annually 13,000 people are diagnosed and there are more than 2,000 deaths, and the death rate is rising!

I know this seems very different from my normal blogs about MS, exercise & positivity but it still links with a treatment for relapsing-remitting multiple sclerosis (RRMS) called ‘Natalizumab’ also known as Tysabri.

Natalizumab is also linked with Melanoma although the association is unclear, in my opinion it is better to stay safe & protect yourself against the sun and its UV rays!

The truth about exposing yourself to the sun without protection is that you are actually exposing yourself to radiation! Now you have to admit, the word radiation is scary! So why do people do it? Why do people purposely lie in the sun without the required protection against first or second-degree burns?

That’s what sunburn actually is, did you know that? How do you feel about it now?

Time to start using sun cream?

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All that said, I am now naming and shaming myself!

Yes, you read that correctly! The picture above is the sunburn I got over the weekend whilst I was in the garden sewing some late seeds & pottering around doing my best to tidy.

I didn’t even give it a second thought to put sun cream on which is so unlike me!

I know by sharing this picture I will very likely be getting told off by friends and family and I accept it! I deserve the telling off because it was very stupid of me not to put sun cream on! Especially as I take ‘Natalizumab’ or Tysabri, I have a fair complexion & I have a suspicious mole that you can see in the picture.

Unprotected exposure to extreme sunlight and ultraviolet radiation is dangerous, it hurts & it looks ugly when the dead skin starts to ‘peal’

Don’t do it!

Wear the correct factor sun cream, a hat, drink as much water as you u leak out & don’t stay in it for too long at any one time!

Enjoy the time you have, spend it wisely & don’t regret the time you spent in the sun unprotected!

Constraints of my MS

Constraints of my MS

At the moment I feel I am doing very well with the acceptance of my MS.

Unfortunately this is such an unpredictable disease which I think makes it impossible to say that I have accepted every part of it.

Not many people know a lot about MS, I know I didn’t before I was told I have it.

I’ll explain a little about my MS. I say ‘my’ MS because not one person who has it is the same as another. We are all completely unique with our MS although the symptoms that we all have can be similar.

Now I am going to talk about one certain topic here but for you to understand I will have to go into detail about other symptoms which I will explain briefly with the aid of:

PAIN

Pain is only one of my symptoms!

This is probably one of the biggest things I have had to and still am learning to cope with!

Why do I have pain?

Pain

More than half of all people with multiple sclerosis will experience pain symptoms at some stage.

Pain can be defined as unpleasant sensory experiences. In MS this may encompass both ‘painful’ feelings and also altered sensations such as pins and needles, numbness, or crawling, burning feelings (known as dysaesthesia).

No two people will experience pain in the same way; it is very subjective and is best described by the person experiencing it.

Types of pain

There are two broadly recognised types of pain in MS:

Neuropathic pain

Also known as nerve pain, this is thought that this arises as a direct result of the damaged to the covering of nerves interfering with the normal transmission of information to the brain. However, the origin of most nerve pain is not fully understood. Examples of neuropathic pain include trigeminal neuralgia, an intense painful sensations in the face, and Lhermittes sign, sensations like electric shocks in the neck and spine.

Musculoskeletal pain

Also known as nociceptive pain. Nociceptors are pain receptors found throughout the body that respond to injury and inflammation. They send messages to the brain that are perceived as pain, usually in the joints or muscles. This type of pain is not directly related to MS, but may be worsened by it; for example, musculoskeletal pain can arise as the result of spasms or abnormal pressure on the muscles and joints due to changes in posture, typically in the back or hips.

Yes I take medication for it!

I’ve tried many different types of tablets, I’ve even tried holistic medicine like acupuncture which I find brilliant for relaxation but unfortunately the effect has never lasted long enough for me to use it as a regular way to self-control the pain.

So instead I have opted to continue with my cocktail of medication such as Pregabalin, Nortriptyline & Duloxetine

If you have clicked on the link for Duloxetine you will notice it is taken for depression, that’s a whole different topic which I’m sure I’ll speak about at some point!

So with my lovely cocktail of super strong neuropathic pain meds can you guess what my next biggest problem is with my MS?…..

Understanding Multiple Sclerosis

http://raconteur.net/healthcare/ms-medical

 

UNDERSTANDING MULTIPLE SCLEROSIS
Danny Buckland explains multiple sclerosis in plain language, and outlines treatments on offer and in development

WHAT IS MS?

Multiple sclerosis (MS) is a neurological condition that damages the central nervous system. The body’s immune system attacks and degrades a fatty tissue coating, called myelin, that surrounds and protects the nerve fibres of the brain and spinal cord.

The term refers to the multiple areas of tissue hardening (sclerosis) that disrupt signals from the brain to all parts of the body.

The MS Society sums up the impact by likening the body’s central nervous system to the electrical supply in a home. If the wiring is faulty, lights flicker, the TV jumps channels and computers freeze. In MS, the appliances are different parts of the body that can malfunction causing pain, discomfort and disability.

Relapsing and remitting MS strikes in cycles that can be days, weeks or months apart and, although the patient can make a good recovery, each relapse can take its toll on the myelin sheath. At this stage, MS is an inflammatory condition. Over time, the majority of these patients will reach the progressive phase, which is known as secondary progressive MS, which is dominated by accumulating and irreversible disability. Some 15 per cent of people have progressive disease from the outset.

Although not fatal, it can weaken the immune system and people can die from complications related to MS. Symptoms include mental and physical fatigue, visual problems, difficulties with speech and swallowing, cognitive impairment, balance and co-ordination issues, along with muscle stiffness and pain. No two cases are the same and symptoms can vary in duration and intensity making life unpredictable.

Scientists cannot say with certainty why someone gets MS, but viruses in childhood or adolescence, a lack of vitamin D and smoking have been identified as potential triggers, and the root cause is likely to be a combination of genetic and environmental factors. It is not hereditary, but there is a heightening of risk among family members.

“We do not know for sure what causes MS, but it is a dog that keeps biting in different places at different times,” says Dr Eli Silber, a consultant neurologist and MS specialist at King’s College Hospital, London.

The random nature of its strike pattern makes it difficult for clinicians to target and, although it is manageable, MS has a major, long-term impact on lives.

MS was first described clinically in 1868, but therapy progress was slow until 20 years ago when magnetic resonance imaging (MRI) techniques allowed more accurate and swifter diagnoses, and disease-modifying treatments (DMTs) cut relapses by 30 per cent.

 

RELAPSE AND REMITTING MS

The lifeline for MS patients has been a suite of disease-modifying treatments (DMTs) taken as tablets or injections, which help neutralise the harmful cells at work during a relapse, and shore up the central nervous system to reduce the level and effect of attacks.

They are not a cure but, combined with symptom management treatments, which deal with a range of symptoms from tiredness to bladder problems, first-line treatments can reduce relapses by up to 50 per cent.

Newer drug therapies can have even better results, but they are harder for patients to get on the NHS as they are given as second-line treatments.

Patients can also boost their defensive arsenal with alternative therapies, such as acupuncture, massage, yoga, meditation and physiotherapy. Vitamin D supplements are recommended by some physicians, but as yet have not been shown to change the course of the disease.

The bleak landscape for MS patients began to change with the introduction of beta interferon in the late-1990s, an injection given every other day that lessened inflammation, although it did have flu-like side effects.

The number and potency of DMTs has continued to grow and among them are Fingolimod (Gilenya), Natalizumab (Tysabri) and Alemtuzumab (Lemtrada).

Gilenya, a daily tablet, works by binding to the surface of white blood cells in the immune system, trapping them in lymph nodes, hampering their ability to attack the central nervous system. It is generally given to patients who have failed on first-line therapies and can cut relapses by more than 50 per cent.

Tysabri, a monoclonal antibody taken as a monthly infusion, sticks to molecules on certain immune cells and stops them getting through the blood-brain barrier. It is a key treatment for more aggressive relapses.

Lemtrada, which was made available in England and Wales on the NHS in April, is given as a course of infusions annually. It kills off the cells in the immune system that mistakenly attack the myelin. When new cells are generated, they are thought to be free from the rogue element. The drug, developed by the University of Cambridge and Genzyme, resulted in far fewer relapses than in study subjects on beta-interferon injections in clinical trials.

Another great encouragement is the discovery that the brain can repair itself in remission by creating new myelin to boosts nerve protection. But the challenge is to accelerate the process for effective relapse damage repair.

MS specialist Dr Eli Silber emphasises the importance of specialist MS nurses in supporting patients with psychological issues.

 

PRIMARY AND SECONDARY PROGRESSIVE MS

Around 80 per cent of people with relapsing and remitting MS will develop the progressive form of the condition, which is where the neurodegeneration hits a downward trajectory.

There are no licensed treatments for this stage. Disease-modifying treatments (DMTs) have been trialed, but have shown only flickers of hope. The lack of effective treatments has galvanised global action and the Progressive MS Alliance, a collaboration of MS organisations, is connecting scientific programmes and awarding grants to boost research.

“There has been such an explosion of new and exciting anti-relapse DMTs that the scientific and research community can now focus more on progressive MS which we just don’t understand,” says Jeremy Chataway, a consultant neurologist at the Queen’s Square MS Centre, the National Hospital for Neurology and Neurosurgery, University College London. “There is now a global focus to this problem. We first need to slow the progression by putting in repair drugs and re-myelinating.”

Dr Chataway offered recent hope with his phase II interim results on the use of a high dose of a statin, published in The Lancet, which showed a “favourable effect on the rate of brain shrinkage” in patients taking 80mg of simvastatin, double the normal dose used to treat high cholesterol.

“It was very encouraging and exciting. We need further trials, but it is a very good step in the right direction,” he says.

Dr Chataway is running the £2.7-million MS-SMART trial that will evaluate three promising drugs in 440 patients at 15 centres in England and Scotland. The trial, funded by the Medical Research Council and the MS Society, is being run jointly with Professor Siddharthan Chandran at Edinburgh University.

Collaboration between King’s College and Imperial College London is using stem cells to test the potential of Fingolimod and Tysabri on progressive MS.

A small Phase II study by Biogen Idec, published in the journal Neurology, had recorded promise in Tysabri, reducing inflammation in progressive patients.

“A lot of the research has been in the early anti-inflammatory areas of MS,” says MS specialist Dr Eli Silber. “There needs to be more for the degenerative progressive side of the disease where we have been less successful at slowing down the process.”

Professor Chandran, who is pioneering research into how the brain can repair itself, describes progressive MS patients as “the lost tribe of MS” because of the absence of any DMTs for this phase of the disease that ultimately affects the majority of sufferers. “This is the great unmet need but there are some potential wins,” he says.

 

THE FUTURE OF MS

MS has emerged out of the dark ages and is now a “pathfinder” disease whose research could accelerate treatments for dementia, Parkinson’s disease, Huntington’s and motor neurone disease.

Solutions for the degenerative type of MS could be transferrable across other conditions, says Professor Siddharthan Chandran, director of the Centre for Clinical Brain Sciences and clinical director of the Anne Rowling Regenerative Neurology Clinic, University of Edinburgh.

It was thought that damage to the myelin was irreversible, but studies have shown the brain actually starts laying down new myelin during remission.

“It is nothing to do with doctors, it is a natural event,” says Professor Chandran. “We grew up being taught that, unlike the liver, skin and gut, for example, the brain could not repair itself, so the logic was that following injury you had no ability to repair. However, recent identification of brain stem cells challenges these assumptions.

“An example of brain stem cells in action is the laying down of new myelin which in turn is protective of damaged nerves. The problem is that it does not do it sufficiently, so our challenge is to supplement and enhance it by finding the cues to promote and accelerate brain stem cell mediated repair. The idea would then be to prescribe drugs that will mobilise your own or endogenous brain stem cells to repair the damage caused by MS.

“An alternative approach is to make human brain stem cells in a ‘dish’ in the lab and then parachute these into the injured MS brain. My view is that mobilising our own brain stem cells using drugs is likely to be the future and most cost-effective method to promote repair in MS.”

He adds: “In the next five to ten years, there will be huge advances in therapeutic trials where you are testing drugs predicted to promote the brain’s own capacity to repair itself.

“I don’t want to fuel false hope, but I am optimistic we will make inroads in the medium term which will give us a window into progressive MS as well as other degenerative disease including the dementias.”

The buoyant research field includes more than 6,000 patients being enrolled on clinical trials into progressive MS over the next five years. And an early-stage study at the University of Utah in the United States has shown that treatment with human stem cells can enable mice crippled with a form of MS to walk again.

“Everyone is trying their best to see if we can get a chink of light,” concludes consultant neurologist Dr Jeremy Chataway. “It would be good to have something, even if it’s not much to start with.”
Written by Danny Buckland
Award-winning health journalist, he writes for national newspapers and magazines, and blogs about health innovation and technology.