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News and Opinions about MS, Health & Disability

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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New MS studies unveiled at Paris meeting

Two reports from the multiple sclerosis get-together in Paris, held last week, caught my attention.

The session was a joint meeting of ECTRIMS and ACTRIMS, the European and Americas Committees for Treatment and Research in Multiple Sclerosis.

Both items from Paris are of special interest to me, as I have personal experience of them.

ParisThe first is news that, after the first round of symptoms, multiple sclerosis can stay mild without causing major problems for decades. This has been uncovered by a 30-year British study.

The second is research that shows that two things appear to increase the risk of MS, independent of each other. One is a strong immune reaction to an Epstein-Barr virus infection while the other is low levels of vitamin D.

My own experience of life with MS includes initial symptoms in the mid-1980s. Diagnosis of ‘benign’ MS followed in 2002, and it was another 10 years before the onset of major problems. They have since progressed.

That’s a period of more than three decades.

I had a brush with EBV, contrcti.ng glandular fever, otherwise called mononucleosis, in my early 20s, and was found the be deficient in vitamin D a year ago.

Paris: Research studies

In Paris, Karen K. Chung of the University College London Institute of Neurology discussed “Does ‘benign’ multiple sclerosis exist? A 30-year follow-up study of people presenting with clinically isolated syndrome”.

Scientists refer to cases with no apparent impairment of the nervous system as benign MS. Despite this, the exact definition is still undecided and, in fact, some researchers argue that benign MS does not exist.

As far as EBV and vitamin D are concerned, researchers from Finland and the USA studied the two risk factors in pregnant women who later developed MS.

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Link between low levels of Vitamin D and risk of MS ever stronger

A new study has underlined the value of vitamin D in the fight against multiple sclerosis.

People with low levels of vitamin D are at greater risk than others of developing MS, a new study shows.

The study looked at stored blood samples of 800,000 pregnant Finnish women.

vitamin dVitamin levels of 1,092 women, who were later diagnosed with MS, were compared to those of 2,123 women around the same age and region who did not develop the disease. The women who went on to develop MS had lower average vitamin D levels than other women.

The study, titled “25-Hydroxyvitamin D deficiency and risk of MS among women in the Finnish Maternity Cohort”, was published last week in Neurology, the official journal of the American Academy of Neurology.

According to the USA’s National MS Society website:

Researchers believe that several genetic and environmental factors influence whether a person will get MS. These factors may also impact the severity of the disease.

Scientists are eager to find risk factors for MS that can be modified to possibly prevent MS and reduce disease activity. Research is increasingly pointing to reduced levels of vitamin D in the blood as a risk factor for developing MS. Studies are underway to determine if vitamin D levels influence MS disease activity.

Increased vitamin D equals lower risk of MS

The team found that overall as vitamin D levels increased, the risk of later developing MS decreased. Women with the greatest deficiency in vitamin D had a twofold increase in the risk of developing MS. And those with the highest vitamin D levels had the lowest risk of a later MS diagnosis.

Most of the women in the study were considered to have deficient or insufficient levels of vitamin D. Of the women who developed MS, 58 percent had deficient levels of vitamin D, compared to 52 percent of the women who did not develop the disease. The researchers conclude that the results directly support vitamin D deficiency as a risk factor for MS and that correcting this among reproductive age women may reduce their future risk of developing MS.

As we who have MS wait impatiently to find a cure, we welcome every new study with good news of one kind or another.

We must greet all such studies as successful steps along the journey to defeat this insidious disease.

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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 Clinical Writer with Healthline, the fastest growing health information site. 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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Coimbra’s high dose vitamin D treatment for MS and other autoimmune diseases works, say patients

I have written before about vitamin D and autoimmune diseases, including multiple sclerosis. What’s more, I take a daily supplement of 5,000 IU (international units) of vitamin D3. That started when I was found to be deficient in the vitamin last October.

D3 is the main element, one of many, in an MS treatment protocol developed by Dr Cicero Coimbra, a neurologist in Brazil. As yet, as far as I am aware, the Coimbra Protocol has not been the subject of any clinical trials and so is not approved by any regulatory authority. Its claimed success rate is, though, impressive. And patients are keen to sing its praises.

This is the story of one such patient, as told by her mother Karen Bell:

My daughter has MS, diagnosed a year ago when she was 20 years old. She heard she most likely has progressive MS as MR scan showed she already has a permanent black hole in her brain.

Because my husband also has MS, I was very familiar with the disease and the probability of disability. That’s why I went into total research mode.

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Dr Cicero Coimbra.

I kept finding stuff about vitamin D helping MS (even more than the drugs), and read tons of studies. I read about Wahls and other things. But, what made the most sense to me, from all my research, was the Coimbra Protocol.

Dr Cicero Coimbra, a neurologist and researcher in Brazil, developed his protocol using high doses of vitamin D. He has personally treated thousands of patients and is now training doctors around the world, for free.

Coimbra success rate 95%, anecdotal reports

Of the people on the protocol, 95% go into total remission and many of them recover from their disabilities, some totally. Most of the remaining 5% either didn’t follow directions or had tremendous stress in their lives. This is known to cause immune system problems.

The protocol sounded amazing and almost too good to true. Why didn’t my daughter’s neurologist know about it? I took vitamin D studies into the appointment to discuss her treatment, but he said ‘you can find studies about anything and many of them are flawed’. He didn’t even want to hear much about the protocol because it hadn’t been studied and the doctor was from Brazil. Such a closed mind!!!

He wanted to put her on Plegridy. While waiting for the insurance stuff to go through, I did more research, even had a person who speaks Portuguese look through the Facebook group I found full of patients of the protocol, and look at the YouTube videos, to try to see if this was for real. That person came back saying if they had MS, they would do it.

We became convinced that the protocol was what we wanted to do and found a doctor in the United States. We were so afraid a relapse would disable our daughter. She had already had four of them in five months, so we decided to start the Plegridy.  The plan was she would stay on it until she could start the protocol. Well, the first shot caused an allergic reaction so we said no to any drugs and decided to wait for the appointment to see the Coimbra Protocol doctor.

Vitamins, no drugs, no relapses

Long story short, my daughter started the protocol and has never had another relapse and is stronger and feels great. She is living a normal life and only has to take vitamins, no shots or other meds with side effects! As a mother, I am now confident my daughter will have a normal and wonderful life.

It is important to know that Dr Coimbra says the protocol stops MS; it is not a cure.

I am sure vitamin D has a key role to play. This is in both helping to prevent and treat MS. Coimbra’s work is as yet untested in clinical trials, but many people say it does work. So, clinical trials need to start soon.

The main problem would seem likely to be the availability of funding for such trials. After all, Big Pharma finances most trials on the way to developing new drug therapies. Unfortunately, I cannot see any of them paying for research into a protocol that doesn’t use their drugs.

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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 Features Writer with Medical News Today. 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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Let’s Compare MS Symptoms, and How We’re Handling Them

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We all know, because we have heard it so many times, that MS is not the same for everyone — that no two people have exactly the same combination of symptoms.

symptomsThat got me thinking the other day (pause for call-outs or derision) about the number of symptoms there are, and which ones I have to deal with.

As a start, I headed over to the website of the U.S.’s National MS Society. I found an imposing list of 22 symptoms. But how many affect me? What do I do about them? And how do you manage yours?

Fatigue – Oh, yes, this can knock me off my feet. But since moving to Spain, it hasn’t affected me. It might be the more relaxed lifestyle.

Walking (Gait) Difficulties – Probably the most visible part of the disease for me. My left side is affected, making walking difficult. I am pleased to say that my Vitamin D supplement appears to be helping me around the house and walking short distances. Fewer falls, too. Over longer distances, I still need a wheelchair — the great folding lightweight power chair I bought.

Numbness or Tingling – Yes, mostly in my left hand. I cannot use that hand to hold anything.

Spasticity – Having looked up the definition, I seem to have been spared this.

WeaknessYes, mainly in my left knee but, again, apparently improving with Vitamin D.

Vision Problems – No, fortunately nothing yet.

Dizziness and Vertigo – A difficult one to answer, but I’ll try to explain. I rarely suffer from dizziness, but my balance depends on being able to see around me. In darkness, I am much more likely to lose my balance.

Bladder Problems – Yes, both infrequency and urgency. These are controlled mainly by medication, but if I’m going where public restrooms may be difficult to find, I wear a pad to be on the safe side.

Sexual Problems – Perhaps the most difficult symptom for many to discuss. Ok, so here goes: Yes, I have sexual problems linked with erectile dysfunction. But I still have a full and fulfilling sex life. How? Easy, Lisa and I talk. We understand each other’s needs and we both end up happy.

Bowel ProblemsThat’s me, but no risk of incontinence here. Constipation is my problem. I take laxatives to overcome this.

Pain – Fortunately, no. Nothing beyond aches and pains that can affect everyone.

Cognitive Changes – Not in the slightest. Just as alert, aware, and understanding as ever.

Emotional Changes – No. I am emotionally stable, calm, virtually worry-free, and happy.

Speech Problems – None, apart from an English accent.

Swallowing Problems – None. You serve it, I’ll swallow it (as long as I like it).

Tremor – None.

Seizures – None at all, but I take a daily dose of anticonvulsive medication because I also have epilepsy. Even so, no seizure for more than 40 years.

Breathing Problems – Yes, shortness of breath if I try to do too much. I find that sitting down gets me going again soon.

Itching – Occasionally, particularly after going to bed.

Headache – Extremely rarely, probably less frequently than many people without MS.

Depression – Never! Life is worth living, so live it.

Hearing Loss – Eh, what? No, seriously, Lisa says I have bionic hearing.

So, how are you getting along with your symptoms?

This article, written by me, was first published by Multiple Sclerosis News Today.

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ian-skype_edited50shadesofsun.com is the personal website of Ian Franks, who is Managing Editor (columns division) of BioNews Services. BioNews is owner of 50 disease/disorder-specific news and information websites – including MS News Today. Ian has enjoyed a successful career as a journalist, from reporter to editor, in the print media. During that career he gained a Journalist of the Year award in his native UK. He was diagnosed with MS in 2002 but continued working until mobility problems forced him to retire early in late 2006. He now lives in the south of Spain. Besides MS, Ian is also able to write about both epilepsy and cardiovascular matters from a patient’s perspective and is a keen advocate on mobility and accessibility issues.

 

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Heeding Advice About Vitamin D Supplement Results in Improvements

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Is vitamin D supplement responsible for improvements?

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This article, written by me, first appeared on Multiple Sclerosis News Today.

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ian profile50shadesofsun.com is the personal website of Ian Franks, who is Managing Editor (columns division) of BioNews Services. BioNews is owner of 50 disease/didorder-specific news and information websites – including MS News Today. Ian has enjoyed a successful career as a journalist, from reporter to editor, in the print media. During that career he gained a Journalist of the Year award in his native UK. He was diagnosed with MS in 2002 but continued working until mobility problems forced him to retire early in late 2006. He now lives in the south of Spain. Besides MS, Ian is also able to write about both epilepsy and cardiovascular matters from a patient’s perspective and is a keen advocate on mobility and accessibility issues.

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Taming Heat Sensitivity at 100 Degrees

Many people voiced their concerns to me about anyone with MS moving to live in a sunny climate. That worry is understandable. With a disease that includes heat sensitivity, where even a hot shower can make you worse, how can any MS patient move to live in an area where daily temperatures average 22 degrees Celsius (82 degrees Fahrenheit) in July and August, but where the highs this year have reached 40 C (104 F).

Well, it is now nearly 10 months since my beloved wife Lisa and I made the move from the mostly cloudy and often rainy U.K. to our dream home in Andalucía in the sunny south of Spain.

Back in the U.K., we lived in a ground floor one-bedroom apartment in an urban area, but now we have our own detached two-bedroom property in a rural community about 10 kilometers (6 miles) from the nearest town.

With almost constant blue skisouth of Spaines, our home is nothing short of idyllic. We have palm trees visible from our kitchen window, an olive tree in the front garden, plus both orange and grapefruit trees very close by. And, in 15 minutes, we can be at the Mediterranean.

Our home has air conditioning and ceiling fans, plus we have an air conditioned car. I live in shorts and lightweight shirts, use plenty of sunscreen, and have a selection of summer hats.

Our home is just over 1 km (0.6 miles) from the main road, and that is reached by traveling between agricultural fields where, depending on the time of year, various crops are grown. So far, I have seen white cabbages, red cabbages and melons – to name but three.

The fields are planted and harvested by hand using gangs of traveling workers. Then, after the crops have been picked and sent on their way, a large herd of goats is released to clear the remaining plants.

Yes, it is hot here, but the good news is that it is affecting me less here than the very occasional hot day in the U.K., and that is because the humidity is much lower here.

The temperatures are more constant here, too. They change more slowly than in the U.K., where they can change up 10 or more degrees Celsius one day and down again the next day during what passes as summer. That volatility, the sudden changes, made me feel a lot worse. It took me a while to realize that my heat sensitivity was to those rapid and often frequent changes. I needed stability.

So having lived in Spain for most of a year, I can say that heat sensitivity is not an issue for me here. Overall, I still have good and bad days, but good now seem to outnumber the bad. Yes, I still fall, but far less often than used to be the case. Fatigue still happens but, again, less often. Pain is far less prevalent, too, but restless leg syndrome still plagues me in bed.

Mobility, or the lack of it, remains my biggest problem. But on my very good days, I can actually reach my car without sitting down halfway there, like I usually do.

So, do I regret exchanging the U.K.’s dreary weather for the almost constant Spanish sunshine? Not at all. Living it and loving it and, don’t forget, more sunshine means more natural vitamin D.

This article was written by me and first appeared in Multiple Sclerosis News Today.

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Ian Franks
Ian Franks is Chief Columnist and Patient Specialist at Multiple Sclerosis News Today. He has enjoyed a successful career as a journalist, from reporter to editor, in the print media; during which he gained a Journalist of the Year award in his native UK. He was diagnosed with MS in 2002 but continued working until mobility problems forced him to retire early in late 2006. He now lives in the south of Spain and uses his skills to write his own flourishing specialist MS, Health & Disability blog at www.50shadesofsun.com. Besides MS, Ian is also able to write about both epilepsy and cardiovascular matters from a patient’s perspective and is a keen advocate on mobility and accessibility issues.
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Official Advice: ‘Take Vitamin D Supplements’

It is not just those of us with multiple sclerosis, now everyone living in the UK is being recommended to consider taking vitamin D supplements in autumn and winter. And this comes from the country’s top public health advisers.

A government-commissioned report has set the recommended levels at 10 micrograms of the vitamin a day, but officials are concerned this may not be achievable through diet alone, particularly when sunlight, which helps in vitamin D production, is as scarce as it is in the UK.

Small amounts of the vitamin can be found in certain foods but most of our vitamin D needs are met by the action of sunlight on our skin. But there is not enough of that owing to the country’s frequently cloudy and depressing weather. Regular readers of this blog may recall that the grey skies were the main reason Lisa and I moved to the south of Spain last year.

vit dNow, an extensive review of the evidence, carried out by the Scientific Advisory Committee on Nutrition (SACN), suggests everyone over the age of one needs to consume 10 micrograms of vitamin D each day in order to protect bone and muscle health.

And public health officials say, in winter months, people should consider getting this from 10 microgram supplements, if their diet is unlikely to provide it.

Foods that do contain vitamin D include oily fish, eggs and fortified cereals.

As far as multiple sclerosis is concerned, the US National MS Society says: “Research is increasingly pointing to a reduced level of vitamin D in the blood as a risk factor for developing MS, and studies are underway to determine if vitamin D levels influence MS disease activity. Recent research also points to a possible role for vitamin D in neuroprotection and myelin repair.”

More generally, vitamin D is important because it regulates the amount of calcium and phosphate in the body, which are vital for the growth and maintenance of healthy bones, teeth and muscles.

However, balance is important because both too high a level of vitamin D is as dangerous as too low a level.

Too little can lead to rickets in children – where the bones become soft, weak and misshapen as they continue to grow. And vitamin D deficiency in adults can lead to osteomalacia – which causes severe bone pain and muscle aches.

On the other hand, too much vitamin D can lead to high levels of calcium in the blood which can cause heart and kidney problems.

 

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Being in the sun helps vitamin D levels but Orkney’s high MS rate is not due to deficiency, study shows

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Spending more time in the sun can help everyone who needs to overcome his or her low level of vitamin D – and research in Scotland suggests that even taking holidays abroad may hold the key to tackling vitamin D deficiency.

People who take foreign breaks have higher levels of vitamin D in their blood, which has been linked to wide-ranging health benefits, including fighting multiple sclerosis. According to the findings, farmers also have higher levels of the vitamin – which is produced naturally in the skin after exposure to sunlight.

Researchers at the University of Edinburgh surveyed the vitamin D levels of around 2000 people in Orkney – 1 in 10 of the population – as part of the ORCADES study.

The team was interested to see whether widespread vitamin D deficiency in Orkney might explain why rates of multiple sclerosis are higher there than anywhere in the world but they were surprised to find that average vitamin D levels are higher in Orkney than mainland Scotland, with the highest levels being seen in farmers and people over 60 years of age who take regular foreign holidays.

Vitamin D is known to be associated with good bone health. It has also been linked to wide-ranging health benefits including lower blood pressure, reduced heart disease risk and better chances of surviving cancer.

Deficiency in vitamin D has been strongly linked to diseases including multiple sclerosis. Scotland has one of the world’s highest rates of MS with Orkney being the worst affected. Studies have yet to prove that vitamin D is responsible or whether it serves as a marker for how much sun exposure a person has had.

Professor Jim Wilson, who led the study at the University of Edinburgh’s Usher Institute, said: “It was surprising to see that levels of vitamin D were not worse in Orkney, and if anything they were better than in mainland Scotland. It would appear that poor vitamin D status, while common enough, cannot explain the excess of multiple sclerosis we see in Orkney.”

Emily Weiss is PhD student at the University of Edinburgh who was involved in the study. She said: “It was interesting to find that the traditional occupation of farming was associated with higher levels of vitamin D in Orkney. This may be because farmers are outside and utilising even the smallest window of vitamin D strength sunshine.

“We also found that farmers in our Orkney cohort tended to be older, suggesting that the traditional way of life is changing, leaving younger people potentially more exposed to MS risk factors such as vitamin D deficiency.”

The research is published in the journal PLoS One and was funded by the Shetland and Orkney Multiple Sclerosis Research Project.

 

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