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50shadesofsun

News and Opinions about MS, Health & Disability

Fatigue makes it difficult to push on

I love writing. No surprise there, it has after all been a major part of my life. But, today, it’s not so easy because I have been hit by a bout of fatigue.

Fatigue is just one possible aspect of multiple sclerosis – but there are plenty of other causes too.

And for anyone fortunate enough not to be affected by fatigue, please don’t tell us to get a good night’s sleep. Be assured, that is not enough.

So, what is fatigue?

The medical information website healthline.com says:

Fatigue is a term used to describe an overall feeling of tiredness or lack of energy. It isn’t the same as simply feeling drowsy or sleepy. When you’re fatigued, you have no motivation and no energy. Being sleepy may be a symptom of fatigue, but it’s not the same thing.

Fatigue is a common symptom of many medical conditions, which range in severity from mild to serious. It’s also a natural result of some lifestyle choices, such as lack of exercise or poor diet.

If your fatigue doesn’t resolve with proper rest and nutrition, or you suspect it’s caused by an underlying physical or mental health condition, see your doctor. They can help diagnose the cause of your fatigue and work with you to treat it.

Why do we get fatigue?

Causes of fatigue can be described, in general terms, as your lifestyle, and your physical or mental health.

Healthline lists lifestyle factors as physical exertion, lack of physical activity, lack of sleep, being overweight or obese, periods of emotional stress, boredom, grief, taking certain medications such as antidepressants or sedatives, using alcohol on a regular basis, using street drugs such as cocaine, consuming too much caffeine, and not eating a nutritious diet.

We know that those of us with MS can get fatigue but there are other physical conditions that can also cause it. Healthline says these include, anemia, arthritis, bromyalgia, chronic fatigue syndrome, infections such as cold and flu, Addison’s disease – a disorder that can affect your hormone levels, hypothyroidism or underactive thyroid, sleep disorders such as insomnia, autoimmune disorders including MS, congestive heart failure, cancer, diabetes, kidney disease, liver disease, chronic obstructive pulmonary disease, and emphysema.

As for mental health conditions, fatigue is a symptom of anxiety, depression, and seasonal affective disorder.

In my case, I’ll blame the MS but today the level of fatigue has been made worse by trying to do too much, too quickly.  Right now, I feel totally worn out and am having trouble keeping my eyes open.

Goodnight.

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Affiliate disclaimer: This affiliate disclosure details the affiliate relationships of MS, Health & Disability at 50shadesofsun.com with other companies and products. Read more.

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50shadesofsun.com is the personal website of Ian Franks, a freelance medical writer and editor for various health information sites. He enjoyed a successful career as a journalist, from reporter to editor in the print media. He gained a Journalist of the Year award in his native UK. Ian received a diagnosis of MS in 2002 and now lives in the south of Spain. He uses a wheelchair and advocates on mobility and accessibility issues.

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Note: Health-related information available on 50shadesofsun website is intended for your general knowledge only and is not a substitute for medical advice or treatment for specific medical conditions. I am not a doctor and cannot and do not give you medical advice. You should seek prompt medical care for any specific health issues and consult a doctor before starting a new diet or exercise programme. Any opinions expressed are purely my own unless otherwise stated.

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Just how are you coping with your health?

“Hi, how are you?” is, perhaps, today’s less formal equivalent of the traditional and polite greeting “How do you do?”

Of course, the greeting is only a rhetorical question and usually we say some form of “I’m fine, thanks.” Sometimes, we say it even when we could feel better.

When you have a serous illness, such as multiple sclerosis, you are sometimes asked a real question about your health, how the disease is affecting you, and so on. And that got me thinking, how am I getting on, how am I coping with MS? And, how are you doing?

how are youMS is certainly not new to me as my first symptoms appeared more than 40 years ago, although it was not definitely diagnosed until 2002. But, just how am I doing?

Regular readers will undoubtedly recall that I visited the HSCT facility in Moscow in October 2016, where it was discovered that I had a vitamin D deficiency. As a result of that, I began to take a daily supplement.

Then, at the end of October last year, I was seen by a neurologist here in Spain – having not seen one during my last 10 years living in the UK. Tests here showed by vitamin D deficiency had improved slightly but its level was still far too low. Additionally, they indicated a similar lack of vitamin B.

So, me medications have now been adjusted to increase significantly the amount of vitamin D supplement and to introduce a regular dose of vitamin B.

How are you? Better, worse, or the same

Have they had an impact? Well, it may be too early to tell. Any perceived gain could only be wishful thinking, but let me tell you what’s been happening.

I don’t usually use my wheelchair at home but Lisa has been unwell, so I have had to do more around the house. To enable me to do this, and to avoid the risk of falling, my neat folding motorized wheelchair has been pressed into use indoors.

On Friday, I drove into our nearest town to visit our bank and the supermarket. When I returned to my car, my wheelchair suffered a mechanical malfunction that turned out to be extremely minor and was fixed by a neighbour in less than five minutes when I got home.

Having left my chair with my neighbor, I had to get from my car into the house by myself. To most people, this would not cause a problem but to me, it was equivalent to a major trek.

I walked carefully up a ramp while holding onto a handrail, entered the house and made it to my armchair without any incident. I was not out of breath, and felt good.

It was a minor achievement that made me feel good, but was it the result of vitamin supplements or just one of my good days? Obviously, I cannot tell yet. But any improvement, no matter how small, must be seen as a sign of encouragement.

What about you, how are you getting on?

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Affiliate disclaimer: This affiliate disclosure details the affiliate relationships of MS, Health & Disability at 50shadesofsun.com with other companies and products. Read more.

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50shadesofsun.com is the personal website of Ian Franks, a freelance medical writer and editor for various health information sites. He enjoyed a successful career as a journalist, from reporter to editor in the print media. He gained a Journalist of the Year award in his native UK. Ian received a diagnosis of MS in 2002 and now lives in the south of Spain. He uses a wheelchair and advocates on mobility and accessibility issues.

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Note: Health-related information available on 50shadesofsun website is intended for your general knowledge only and is not a substitute for medical advice or treatment for specific medical conditions. I am not a doctor and cannot and do not give you medical advice. You should seek prompt medical care for any specific health issues and consult a doctor before starting a new diet or exercise programme. Any opinions expressed are purely my own unless otherwise stated.

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Be positive about living life your way

life

If you are living with a disability, or a chronic illness like multiple sclerosis, how do you choose to approach life?

Some people will say “You must” or “You must not” do this, that, or the other. But, in my opinion, they are wrong. I will only urge you to do certain things, no more. No, ‘you must’ or ‘you should’. Not from me.

We are all individuals and need to form our own opinions and make our own decisions. The human race is not an actual race, not a contest. We are each unique and do not benefit from comparison to other people.

Therefore, what follows is not a list of rules to follow. They are just things that I do, that I would urge you to consider. 

Focus on what you can do – and do it. I put what I can no longer do where it belongs. By that, I mean as a happy memory from my past.

Keep calm. By that I mean, when faced with a problem or difficulty, I think about how to overcome it. It’s important not to panic, I take my time and think my way through it.

Don’t worry too much about the future. Sure, if there is anything that can be done to make life better, then by all means I’ll do it. However, in the words of an old song, “Whatever will be, will be, The future’s not ours to see”, so there is little point worrying about it. Perhaps it would be better to consider what we do with our lives now, rather than what might, or might not, happen in years to come.

Grasp opportunities in life

Live life to the full. I grasp every opportunity that presents itself. In the past six years, I have divorced and remarried; gone to the most northern point of mainland Europe; visited Hawaii, New York, and Moscow; crossed the Atlantic by cruise ship; and moved to live in Spain. There’s an adage in the business world that is perfect for us. And that is not to see problems as insurmountable obstacles but as opportunities to be taken. In other words, turn a negative into a positive.

Live your life as you want to live. While I urge you to live positively, ultimately how you live your life is your own decision.

Accept the love of those nearest and dearest to you, and make sure you show your love for them in return. Think about it for a moment, where would we be without their support?

No man is an island, so the saying goes, and that is true. Whether or not you have a disability, isolation is not an easy choice. While I prize my independence, as I am sure you do, sometimes I do need help. You will too. At such times, we don’t need to be too independent or proud to accept assistance – or even ask for it.

Value yourself. Please don’t fall into the trap of believing that your disability makes you worthless. You do have value as an individual with your own opinions, as a member of your community

Live your life, speak your truth. While speaking out will come easer to some than others, it is important that we speak for ourselves. We need to be our own advocates; no one else can do it as well as ourselves.

Happy New Year.

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Affiliate disclaimer: This affiliate disclosure details the affiliate relationships of MS, Health & Disability at 50shadesofsun.com with other companies and products. Read more.

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50shadesofsun.com is the personal website of Ian Franks, a freelance medical writer and editor for various health information sites. He enjoyed a successful career as a journalist, from reporter to editor in the print media. He gained a Journalist of the Year award in his native UK. Ian received a diagnosis of MS in 2002 and now lives in the south of Spain. He uses a wheelchair and advocates on mobility and accessibility issues.

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Note: Health-related information available on 50shadesofsun website is intended for your general knowledge only and is not a substitute for medical advice or treatment for specific medical conditions. I am not a doctor and cannot and do not give you medical advice. You should seek prompt medical care for any specific health issues and consult a doctor before starting a new diet or exercise programme. Any opinions expressed are purely my own unless otherwise stated.

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New Year resolutions: Do we want or need them?

New Year resolutions may have their place in some people’s lives but not in mine. That’s not to say that I never set targets, and set out to achieve them, but I cannot see anything special about January 1.

Yes, it marks the start of a new calendar year – but, so what?

resolutions If you want to start, or stop, doing something in your life, then you should start doing so immediately. For example, give up smoking on March 23 or start a new diet on August 4. There is nothing magical about the beginning of January.

And, if truth be known, most New Year resolutions don’t last very long. Determination of most people, even those with the very best intentions, tends to wane fast and their resolutions quickly fall by the wayside. Mostly, this happens in months, if not weeks, or even days.

I am completely sure that I’d be one of those who give up and ditch their resolutions sooner than later. And this is fine for anybody who wants to do something, but not for someone who needs to do it.

‘Want’ vs ‘need’

There is a great deal of difference between ‘want’ and ‘need’. As an example, you might ‘want’ to eat a large meal, but it isn’t a ‘need’. However, you do ‘need’ to eat to live. To put it simply, a ‘want’ is something you would like to have, but is not absolutely necessary. While a good thing to have, it is not essential. A ‘need’ is essential.

As someone with a chronic disease, in my case multiple sclerosis, the need to look after myself is extremely important. It could even be described as critical.

It includes keeping a careful watch on what I eat along with the amount and level of exercise I take. Also, through my doctor, I have to keep an eye on my vitamin levels, particularly B and D. I was found to be vitamin D deficient in 2016, and a couple of months ago my vitamin B level was discovered to be too low. I have now been prescribed supplements of both.

To live as healthy a life as possible is an ongoing need. It is not related to the New Year and will not be put aside like a resolution.

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Affiliate disclaimer: This affiliate disclosure details the affiliate relationships of MS, Health & Disability at 50shadesofsun.com with other companies and products. Read more.

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50shadesofsun.com is the personal website of Ian Franks, a freelance medical writer and editor for various health information sites. He enjoyed a successful career as a journalist, from reporter to editor in the print media. He gained a Journalist of the Year award in his native UK. Ian received a diagnosis of MS in 2002 and now lives in the south of Spain. He uses a wheelchair and advocates on mobility and accessibility issues.

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Note: Health-related information available on 50shadesofsun website is intended for your general knowledge only and is not a substitute for medical advice or treatment for specific medical conditions. I am not a doctor and cannot and do not give you medical advice. You should seek prompt medical care for any specific health issues and consult a doctor before starting a new diet or exercise programme. Any opinions expressed are purely my own unless otherwise stated.

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Drugs, risks, spending cuts, deaths, new drugs, and so much more

As we reach the start of another year, it seems a good time for me to review the last 12 months, as seen through the eyes of 50shadesofsun.com.

January

The year began by focusing on hematopoietic stem cell transplantation (HSCT). Dr Denis Fedorenko of the HSCT centre in Moscow published a guide to the procedure.

Russian Physician’s Guide to HSCT in Moscow

people withFebruary

UK government policies grabbed my attention, along with actions regarding people with disabilities and benefits to which they are entitled.

Disabilities: Government loses tribunals, then changes rules

Disabilities: Government warned forced activities ‘could make health worse’

More flock to accuse disability assessors of lying

March

New treatments came to the fore this month. Ocrevus gained approval from the FDA, while Zinbryta got the go ahead for use in the UK.

After Long Wait, Zinbryta Gains Approval in Areas of the UK

Ocrevus: Counting Down to Expected FDA Approval

April

Allegations had been made that new disability access policies at Disney parks was discriminatory. However, a court decided that the new way of doing things was perfectly ok.

Disney Disability Access Rules Don’t Break Law, Court Rules

May

MS treatments were in the spotlight once again. Questions were being asked about the drug safety and why many people choose to avoid them.

Mixed messages about beta-interferon safety to treat MS

Why are DMTs – Drugs to treat MS – Resisted by so Many?

June

My attention was caught by on of the UK government contractors trying to put the chaotic assessment process behind it. It chose to change its name but that was fooling no one.

I also looked at the much valued and desired matter of independence.

Atos tries to escape its past though superficial rebranding

Even a little independence is a great feeling

July

Risks appeared on two fronts. First, death and serious injuries to patients to the use of Zinbryta being limited in Europe. Second, people with disabilities in the UK were still facing the risk of benefit cuts.

Zinbryta use restricted in Europe after a death and four serious liver injuries

Disability benefit cuts are still a real risk

August

Issues with lack of balance and mobility means that falls are a frequent reality. However, not all falls are the same.

I also looked at MS treatments and how close we might be to finding the holy grail – a cure.

Falls – the good, the bad, and the ……

Cure for multiple sclerosis: Are we close?

September

Inside criticism surfaced about mismanagement of disability benefits. Nothing new to me but good to have confirmation from within. On the same tack, the UK government department responsible for benefits was trying to hide assessment problems.

Talking of confirmation, my theory the MS is linked to glandular fever, or mononucleosis, was backed by researchers.

Department helpline worker lambasts mismanaged disability benefits system

I said it 14 months ago, now researchers agree: MS is linked to ‘mono’

DWP fights to hide WCA ‘under-performance’ and PIP assessments

October

A number of drugs were labelled ‘rip-offs’ in a new report. These included MS drug alemtuzumab.

UK government officials proved they do not understand variable conditions, such as those experienced by people with MS.   

MS therapy alemtuzumab is named a ‘rip-off’ drug, report

Disability benefits stopped because government doesn’t understand variable conditions

November

The number of people wth MS in the USA is more than double that previously thought. Could that be similar elsewhere?

We knew UK spending cuts were dangerous but now we know that they have ben responsible for needless deaths.

Nearly 1 million Americans have MS, not 400,000 as previously thought – NMSS Study

Needless deaths caused by government spending cuts

December

Great to see the doctor who first suggested CCSVI treatment could help people with MS now agrees this isn’t true.

However, shocking to see that someone assessed as ‘fit to work’ died before the appeal could be heard.

CCSVI treatment does NOT work for MS, says clinical trial

Assessment disgrace: ‘Fit for work’ man dies before ESA appeal can be heard

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Affiliate disclaimer: This affiliate disclosure details the affiliate relationships of MS, Health & Disability at 50shadesofsun.com with other companies and products. Read more.

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50shadesofsun.com is the personal website of Ian Franks, a freelance medical writer and editor for various health information sites. He enjoyed a successful career as a journalist, from reporter to editor in the print media. He gained a Journalist of the Year award in his native UK. Ian received a diagnosis of MS in 2002 and now lives in the south of Spain. He uses a wheelchair and advocates on mobility and accessibility issues.

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Note: Health-related information available on 50shadesofsun website is intended for your general knowledge only and is not a substitute for medical advice or treatment for specific medical conditions. I am not a doctor and cannot and do not give you medical advice. You should seek prompt medical care for any specific health issues and consult a doctor before starting a new diet or exercise programme. Any opinions expressed are purely my own unless otherwise stated.

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Frankincense – a possible future treatment for MS, new research

One of the original Christmas presents may turn out to be a 21st century gift to people with multiple sclerosis.

Most people, whatever their faith if any, will be familiar with the story of the Three Kings, or wise men. According to the story, they arrived in Bethlehem and gave the baby Jesus their offerings of gold, frankincense and myrrh.

If you didn’t know, and I don’t see why you should, frankincense is an aromatic resin used in incense and perfumes. It is obtained from trees of the genus Boswellia.

frankincense

The tree from which frankincense is obtained.

Now, a group of researchers in Germany say that an extract can be used to treat relapsing MS.

The study, “A standardised frankincense extract reduces disease activity in relapsing-remitting multiple sclerosis (the SABA phase IIa trial)” was published in the Journal of Neurology, Neurosurgy, and Psychiatry, on December 16, 2017.

It found that an oral administration of a standardised frankincense extract (SFE) is safe and reduces disease activity in patients with relapsing multiple sclerosis (RMS).

The researchers concluded that the oral SFE was safe, tolerated well and exhibited beneficial effects on RMS disease activity. They added that it warrants further investigation in a controlled phase IIb or III clinical trial.

Frankincense study explained

The study reports that, after a 4-month baseline observation phase, patients were treated for 8 months with an option to extend treatment for up to 36 months.

It says: “The primary outcome measures were the number and volume of contrast-enhancing lesions (CEL) measured in MRI during the 4-month treatment period compared with the 4-month baseline period.

“Eighty patients were screened at two centres, 38 patients were included in the trial, 28 completed the 8-month treatment period and 18 of these participated in the extension period.

“The SFE significantly reduced the median number of monthly CELs from 1.00 to 0.50 at months 5-8. We observed significantly less brain atrophy as assessed by parenchymal brain volume change.

“Adverse events were generally mild (57.7%) or moderate (38.6%) and comprised mainly gastrointestinal symptoms and minor infections.  

“Mechanistic studies showed a significant increase in regulatory CD4+ T cell markers and a significant decrease in interleukin-17A-producing CD8+ T cells, indicating a distinct mechanism of action of the study drug.”

The science seems to be based on the fact that frankincense contains boswellic acids that are anti-inflammatory.

It will be interesting to see if further studies will be undertaken and, if so, what the eventual outcome may be.

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Affiliate disclaimer: This affiliate disclosure details the affiliate relationships of MS, Health & Disability at 50shadesofsun.com with other companies and products. Read more.

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50shadesofsun.com is the personal website of Ian Franks, a freelance medical writer and editor for various health information sites. He enjoyed a successful career as a journalist, from reporter to editor in the print media. He gained a Journalist of the Year award in his native UK. Ian received a diagnosis of MS in 2002 and now lives in the south of Spain. He uses a wheelchair and advocates on mobility and accessibility issues.

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Note: Health-related information available on 50shadesofsun website is intended for your general knowledge only and is not a substitute for medical advice or treatment for specific medical conditions. I am not a doctor and cannot and do not give you medical advice. You should seek prompt medical care for any specific health issues and consult a doctor before starting a new diet or exercise programme. Any opinions expressed are purely my own unless otherwise stated.

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Christmas, Hanukkah, Yule, or another festival – disabled or not – let’s all be happy

Season’s greetings to one and all, family, friends, neighbours, acquaintances, and all my readers alike.

If you are disabled and find this season a challenge, be sure to pace yourself. As almost 17 years have passed since I received a diagnosis of having MS, I understand it can be difficult. It is easy to get caught up with enthusiastic family members and friends. But, your health matters, so please stay in control and don’t do more than you can manage.

Papa Noel.

This time of year is full of festivities, not just Christmas which, although supposedly marking the birth of Christ, has become a secular celebration. I say ‘supposedly’ because scholars of history say he was actually born in April. Christmas was only put in December by the early church to take over from the pagan festival of yule and the birth of the sun king.

Other holidays that are celebrated widely in December include: Judaism’s Hanukkah, Buddhism’s Bodhi Day (day of enlightenment), and Kwanzaa, which is a Pan-African festival popular in the US.

And here in Spain, the 12th day of Christmas – January 6 – is the main fiesta. It is the Dia de Los Reyes, or Three Kings Day.

Three Kings Day

This is the day that the children of Spain, and other Hispanic countries, traditionally get presents for Christmastime.

While children from other parts of the world eagerly await Santa Claus on Christmas Eve night, children here look forward to the evening of January 5. Then, children leave shoes by the door in the hope that the three kings will leave gifts for the morning. Does that sound familiar?

These days, though, Santa Claus seems to be displacing the traditional Three Kings at Christmastime in Spain. Santa Claus is becoming more common, but even families that choose to embrace “Papa Noel” also tend to wait for the Kings.

three kings

Three Kings parade.

The arrival of the Three Kings on the evening of January 5 is marked throughout Spain. Melchor, Gazpar and Baltasar (the African king) appear in parades through villages, towns, and cities. These also feature floats from which locals throw handfuls of sweets to the children waiting in the streets.

Just as it is traditional for nativity scenes not to include the baby Jesus until Christmas Day, the wise men, or three kings, are added later. The images of the wise men are moved closer to Bethlehem over the Christmas season. They arrive at the stable on the 6th.

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Affiliate disclaimer: This affiliate disclosure details the affiliate relationships of MS, Health & Disability at 50shadesofsun.com with other companies and products. Read more.

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50shadesofsun.com is the personal website of Ian Franks, a freelance medical writer and editor for various health information sites. He enjoyed a successful career as a journalist, from reporter to editor in the print media. He gained a Journalist of the Year award in his native UK. Ian received a diagnosis of MS in 2002 and now lives in the south of Spain. He uses a wheelchair and advocates on mobility and accessibility issues.

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Note: Health-related information available on 50shadesofsun website is intended for your general knowledge only and is not a substitute for medical advice or treatment for specific medical conditions. I am not a doctor and cannot and do not give you medical advice. You should seek prompt medical care for any specific health issues and consult a doctor before starting a new diet or exercise programme. Any opinions expressed are purely my own unless otherwise stated.  

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CCSVI treatment does NOT work for MS, says clinical trial

At last, researchers have found the truth about using angioplasty to treat CCSVI in people with multiple sclerosis. They have found it is not effective and say it is not recommended.

The research team included Dr Paolo Zambini, the doctor who first proposed there was a link but now accepts that he was mistaken.

CCSVI, or chronic cerebrospinal venous insufficiency to give its full name, is characterized by restricted venous outflow from the brain and spinal cord. Its treatment, by venous percutaneous transluminal angioplasty (PTA). This uses balloons to enlarge veins so that more blood flows out of the brain and spinal cord, and so restore normal blood flow.

However, it has been controversial on two fronts. The first is whether CCSVI is associated with MS. And, second, whether its treatment by PTA is beneficial in people with MS.

Researchers in Italy have conducted a clinical trial, and its report states that the PTA procedure did NOT improve the participants’ functioning or reduce their brain lesions.

In conclusion, researchers said that venous PTA cannot be recommended in patients with MS. It has proven to be largely ineffective technique, although safe.

CCSVI trial explained

ccvsiResearchers published their study in the journal JAMA Neurology. The title is “Efficacy and Safety of Extracranial Vein Angioplasty in Multiple Sclerosis A Randomized Clinical Trial.

The objective of the trial was to determine the efficacy and safety of venous PTA in patients with MS and CCSVI.

The Brave Dreams trial was a multicentre, randomized, double-blind, sham-controlled, parallel-group trial to evaluate the efficacy and safety of venous PTA in patients with MS and CCSVI in extracranial or extravertebral veins.

It analyzed 177 patients with relapsing-remitting MS; 62 were ineligible, including 47 (26.6%) who did not have CCSVI on colour Doppler ultrasonography screening. A total of 115 patients were recruited in the study timeframe. All patients underwent a randomized, double-blind, sham-controlled, parallel-group trial in six MS centres in Italy. The trial began in August 2012 and concluded in March 2016; data was analyzed from April 2016 to September 2016.

Patients were randomly allocated (2:1) to either venous PTA or catheter venography without venous angioplasty (sham).

An end to the CCSVI controversy?

Dr Paolo Zamboni.

Controversy has raged since 2009, when Zamboni, from the University of Ferrara in Italy, put forward the idea that CCSVI may contribute to nervous system damage in MS. He also published results from a study which demonstrated that CCSVI was present in all the individuals with MS who he examined.

In truth, however, not everyone with MS has CCSVI. Further, although considered a safe procedure, the angioplasty treatment does not help with MS symptoms. This well-regulated double-blind clinical trial says so – and so, now, does Dr Zamboni.

As far as I am concerned, this puts the whole issue of CCSVI treatment for MS to rest. But I am sure some diehards will attempt to keep the controversy going.

I have always been highly skeptical of claims that the treatment could help relieve MS symptoms. This trial proves the claims to be wrong. Zamboni admits he was wrong. Enough said.

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Affiliate disclaimer: This affiliate disclosure details the affiliate relationships of MS, Health & Disability at 50shadesofsun.com with other companies and products. Read more.

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50shadesofsun.com is the personal website of Ian Franks, a freelance medical writer and editor for various health information sites. He enjoyed a successful career as a journalist, from reporter to editor in the print media. He gained a Journalist of the Year award in his native UK. Ian received a diagnosis of MS in 2002 and now lives in the south of Spain. He uses a wheelchair and advocates on mobility and accessibility issues.

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Note: Health-related information available on 50shadesofsun website is intended for your general knowledge only and is not a substitute for medical advice or treatment for specific medical conditions. I am not a doctor and cannot and do not give you medical advice. You should seek prompt medical care for any specific health issues and consult a doctor before starting a new diet or exercise programme. Any opinions expressed are purely my own unless otherwise stated.

 

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Healthy eating can improve MS symptoms, but societies won’t endorse any one diet

Multiple sclerosis organisations around the world back the idea that eating a healthy diet can help people with the disease. But they are refusing, correctly in my view, to get behind any one diet.

dietA new study, published in Neurology, says that eating a healthy diet may be linked with reduced disability and fewer MS symptoms. Such a diet would include fruits, vegetables, and whole grains.

I have never attributed any importance to people saying that diet cured them of MS. In fact, it’s nothing short of hogwash. But that’s not to say that diet cannot help, just that it is not a cure by itself.

There are a number of dietary plans for which claims are sometimes made, and about which strong views are held. These include the Swank and Overcoming MS diets. Supporters of Swank, for example, believe it can reduce the frequency of flare-ups and lessen the severity of symptoms.

However, the US’s National MS Society and the UK’s MS Society say there is not enough evidence to recommend any one diet.

The authors of the new study, led by Kathryn C. Fitzgerald, acknowledges that there is a lack of evidence on the potential influence that diet may have on MS symptoms.

Fitzgerald works in the Department of Neurology, Johns Hopkins School of Medicine in Baltimore, Maryland, USA. She says: “People with MS often ask if there is anything they can do to delay or avoid disability. Many people want to know if their diet can play a role, but there have been few studies investigating this.”

Severe disability 20% less likely

To examine the role that diet may play in MS, Fitzgerald’s team looked at questionnaires completed by 6,989 people with MS as part of the North American Research Committee registry.

The team found that people in the group with the most healthy diet were 20% less likely to have more severe physical disability than people in the group with the least healthy diet.

Fitzgerald adds: “While this study does not determine whether a healthy lifestyle reduces MS symptoms or whether having severe symptoms makes it harder for people to engage in a healthy lifestyle, it provides evidence for the link between the two.”

The authors acknowledged that the study has two limitations:

·         First, participants were mostly older white people who had been diagnosed with MS for an average of 20 years. So, although people with all types of MS were included, the findings might not apply to everyone with the disease.

·         Second, the study’s design does not provide an insight into whether healthy diets might influence MS symptoms in the future.

What can a diet do for someone with MS? In my opinion, about the same as it can do for someone without the disease; a balanced diet helps to achieve and maintain a healthy level of fitness. But it is not a cure and never can be; don’t let anyone tell you otherwise.

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Affiliate disclaimer: This affiliate disclosure details the affiliate relationships of MS, Health & Disability at 50shadesofsun.com with other companies and products. Read more.

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50shadesofsun.com is the personal website of Ian Franks, a freelance medical writer and editor for various health information sites. He enjoyed a successful career as a journalist, from reporter to editor in the print media. He gained a Journalist of the Year award in his native UK. Ian received a diagnosis of MS in 2002 and now lives in the south of Spain. He uses a wheelchair and advocates on mobility and accessibility issues.

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Note: Health-related information available on 50shadesofsun website is intended for your general knowledge only and is not a substitute for medical advice or treatment for specific medical conditions. I am not a doctor and cannot and do not give you medical advice. You should seek prompt medical care for any specific health issues and consult a doctor before starting a new diet or exercise programme. Any opinions expressed are purely my own unless otherwise stated.

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Take responsibility, vitamins, and a position for sleep

We should all take responsibility for our own health, and this is something I both advocate and practice.  That’s why I got my GP to refer me to an MS specialist neurologist here in Spain, and why Lisa and I have been looking at the possibility of buying an adjustable bed.

Regular readers may recall that blood tests revealed I was deficient in vitamins B12 and D. The neurologist prescribed supplements to put this right.

Livestrong.com says vitamin B12 plays an important role in many of our everyday functions. Without it, the nervous system and circulatory system cannot work optimally. B12 comes from many of the foods you eat. Some people do not get enough B12 in their diets, however, and others may have difficulty absorbing the nutrient from their food. In these cases, you may need supplemental B12.

supplementsSupplemental B12 is available in capsules, gels and even injections. The type you need depends on the degree of your deficiency. While most people’s blood B12 levels range between 200 and 900 pg/mL, according to Medline Plus, you may experience deficiency symptoms once your levels drop below 200.

B12 deficiency, which causes a number of unpleasant side effects. You may feel sluggish and weak, experience tingling in your hands and feet, feel confused or even have trouble with your balance.

Supplements to fix problems of low vitamins

As I also have a heart condition, I wanted to establish that vitamin D supplements work ok with blood thinners. Once again, livestrong.com provides valuable reassurance:

For some people, blood thinners are a necessity. They are prescribed to prevent heart attacks, strokes and blood vessel clots. There are two main types of blood thinners — anticoagulants, such as heparin and warfarin — or Coumadin — and anti-platelets, such as aspirin. Blood thinners are known to have many drug interactions, so read labels and packaging inserts when

Both the National Institutes of Health Office of Dietary Supplements and the Agency for Healthcare Research and Quality do not list any negative interactions between vitamin D supplements and blood thinners. Beth Israel Deaconess Medical Center indicates that taking vitamin D supplements while on certain blood thinners, such as heparin, may prove beneficial. Heparin may interfere with bone growth and vitamin D use in the body, which could lead to bone loss and osteoporosis. Taking vitamin D and calcium supplements while you are on heparin may help prevent this.

Then there’s the issue of sleep and the possible desirability of adjustable beds. We decided to research the pros and cons. This is what came to light:

Advantages of adjustable beds

They:

  1. provide a higher level of blood circulation at night
  2. help to relieve the typical aches and pains that come with life
  3. can relieve the symptoms of asthma
  4. can reduce symptom of indigestion, or acid reflux
  5. allow for a greater level of independence

Adjustable beds are often needed by those of us who have ongoing health issues that limit mobility. These beds help promote greater independence because they are easier to get inor get out of – without help from anyone else.

  1. It doesn’t prevent other bed-related fun

Whatever it is that you define as ‘fun’, from doing a crossword, checking Facebook, surfing the web, or something a little more intimate, it won’t be curtailed.

Disadvantages of adjustable beds

They:

  1. are expensive
  2. may be high maintenance costs
  3. can be loud
  4. are incredibly heavy 
  5. can be difficult to clean
  6. provide difficulty in movement

When used to raise your upper body or legs, adjustable beds keep you in one sleep position – on your back. To sleep on your side, you need to leave the bed flat, defeating the object of having an adjustable bed in the first place.

7. Not all the physical benefits that are promoted may be experienced

It is possible for you to spend a great deal of money on an adjustable bed, yet get no physical benefit from the change in how you sleep.

Bearing all that in mind, Lisa and I decided to check out a reclining sleep position without buying a new bed. So, we bought a special inflatable cushion (pictured above) which can elevate the mattress. This can raise your upper body by various degrees.

So far, the vitamin supplements are beginning to have some positive effect. And we have found the elevated position to be comfortable and both gained a better night’s sleep.

The trial goes on.

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Affiliate disclaimer: This affiliate disclosure details the affiliate relationships of MS, Health & Disability at 50shadesofsun.com with other companies and products. Read more.

* * * * *

50shadesofsun.com is the personal website of Ian Franks, a freelance medical writer and editor for various health information sites. He enjoyed a successful career as a journalist, from reporter to editor in the print media. He gained a Journalist of the Year award in his native UK. Ian received a diagnosis of MS in 2002 and now lives in the south of Spain. He uses a wheelchair and advocates on mobility and accessibility issues.

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