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News and Opinions about MS, Health & Disability

Assessments for disability benefits cause ‘terrifying insecurity’

A pressure group has warned that the government’s disability benefit assessments are the cause of “terrifying insecurity”. What’s more, it says assessments are driving disabled women to destitution, and even “hastening their deaths”.

The warning was given by WinVisible, a group for women with disabilities, of all backgrounds, ages, and situations. It came when the group submitted evidence to the UK’s House of Commons work and pensions select committee. The committee is looking into assessments for employment and support allowance (ESA) and personal independence payment (PIP) assessments. Both benefits are claimed by people who are sick or have disabilities, many with MS.

assessmentsThe campaigning group said both ESA and PIP assessments cause terrifying insecurity. WinVisible told MPs that the insecurity leads to “suicides or admissions to NHS psychiatric institutions”.

Government benefit cuts, and how they are implemented, cause enormous suffering, destitution, and hasten deaths of sick and disabled people, says WinVisible.

The group provided the committee with examples of disabled women whose PIP or ESA claims have been disallowed because they missed face-to-face assessments.

One woman lost her ESA entitlement because she was unable to run to catch a bus, due to a long-term health condition. As a result, he missed her assessment. Her entitlement was disallowed even though she had rung the centre to tell them she would be 10 minutes late.

Face-to-face assessments distress

Another woman, a mental health service-user and child abuse survivor, was placed in the ESA work-related activity group after she was assessed, and was pressured to apply for jobs. Once, when she arrived at a meeting in tears, an adviser for Maximus apparently told her: “You can choose to be a victim or you can go and get a job.”

After intervention by both WinVisible and the woman’s MP, contractor Maximus apologised and the DWP agreed to place the her in the ESA support group. People in the support group are not required to look for work.

A third woman lost benefits for several weeks because she cancelled a face-to-face assessment to attend an urgent medical appointment.

WinVisible told the committee that one woman said: “The hoop jumping, form filling and getting support to get benefits, and keep them, has pushed me to the end of sanity and destroyed my faith in the powers that be.

“I have been made to feel like a criminal and guilty before being charged.”

It’s good that the select committee is holding an inquiry into the assessment system. It’s high time something was done, but I don’t think anything good to come from it. Even if the select committee calls for the system to be changed, don’t expect the government to listen.

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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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Government budget disappointment: Extra cash but not enough for health, social care crisis ignored

Chancellor of the Exchequer Phillip Hammond, the UK government minister in charge of the Treasury, is under fire from critics.

Last week, Hammond introduced his budget that included £2.8bn funding for frontline NHS services in England over the next three years. Crucially, though, and in my view shamefully, he did absolutely nothing to tackle the country’s care crisis.

social care

Chancellor Phillip Hammond leaves 11 Downing Street. He holds his budget speech in the traditional red briefcase.

Instead, he seems to be waiting for the social care consultation which the government has promised to publish next summer. This is planned to address the issue of long-term funding, but why wait? Let’s bring it forward six months.

Campaigners have welcomed the extra cash for the NHS but say it falls woefully short of what is needed.

Leading campaign group the MS Society said the £2.8bn over three years is well short of what’s needed. The society’s website says leading health experts estimate the NHS needs £4 billion next year alone to meet demand. What’s more, it says the funding gap is set to reach £20 billion by the end of 2022. So, Hammond’s extra cash is clearly a case of too little, too late.

MS Society chief executive Michelle Mitchell said: “This budget will come as a huge disappointment to people with MS. The additional NHS investment, while welcome, falls far short of the extra £4 billion a year health leaders say is needed. This risks undermining not only recent exciting developments in MS treatments, but also quality and access to NHS services.”

Social care system cannot cope

Turning to the care crisis, she said: “Unless the health and social care funding gap is addressed, people with MS, their families and carers will continue to pay the price for a system unable to cope with demand.”

social careThis year, the society has campaigned together with health sector leaders, and other charities, calling on the government to urgently address the care crisis.

The government’s consultation may be next summer, but that does nothing to help people who need care today, it says.

Currently, it’s estimated that the social care funding needs an additional £2.5 billion for 2019/20 alone. However, the chancellor missed the opportunity to prove this government is committed to fixing the social care system.

Chancellor Hammond also announced a £1.5bn package to improve the much-criticised Universal Credit system. This includes the removal of the seven-day waiting period at the beginning of a benefit claim. What this means is that entitlement to Universal Credit will start on the day of the claim.

The MS Society says: “While this is a welcome change for new claimants to Universal Credit it doesn’t help anyone currently struggling with other benefits.

“We know people living with MS have lost at least £6 million per year in reduced support since Personal Independence Payment (PIP) was introduced.” Now, don’t get me started on PIP.

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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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Search for a “miracle” cure journeys to Israel

Documentary ‘The Search for a Miracle Cure’ tells the story of a stem cell therapy being trialled in Israel. British TV station Channel 4 broadcast it on Thursday night.

cure

Mark Lewis (pic: Seddons Solicitors).

The programme followed British solicitor (lawyer) Mark Lewis as he travelled to Jerusalem to take part in a trial in a hope to find a cure for multiple sclerosis.

The treatment involves injecting stem cells into the base of the spine but is NOT the well known HSCT therapy. One big difference is that, unlike HSCT, the new experimental treatment at Hadassah University Medical Centre, does not include chemotherapy.

Hadassah is conducting a double-blind trial that involves stem cells and placebos. The patients do not know what they are getting, and nor does the medical team.

Mark, who is an internationally known lawyer, experienced amazing improvements within two hours of his first treatment. However, by the time his second treatment came around, six months later, much of those improvements had not lasted.

So much for a miracle cure.

Regular readers will know that I am a fervent supporter of HSCT as a superior treatment of MS. And that despite being told that I am an unsuitable candidate for it, as I already have a heart condition. So, it should surprise no one that I intend to keep an eye out for the results of this trial, and will not judge it until then.

For now, my views could only be based on the TV programme and the subsequent comments made by Mark and his wife Mandy.

Mark believes there will be a cure

Mark said: “I’m in my 50s. GP notes suspected MS 44 years ago. MRI diagnosis 29 years ago. I have Secondary Progressive (SPMS) and had 90% paralysis in my right hand. This was miraculous. Within two hours a 29-year pain had gone.”

Mandy said: “This treatment is different from others I have heard about. It really didn’t have down time or side effects. The results where immediate.

“Mark has secondary Progressive MS. He hadn’t been able to clap his hands for years and years, he can now. He can shake hands using his right hand.

“I think you need continued injections of stem cells to reap the full benefit. It’s really just having an epidural injecting your own stem cells, but they are trying to see if it works in a drip form into the arm too. Side effects-headache.”

Mark added: “Just a few points:

“1. I believe that there will be a cure. If you don’t then that is your prerogative

“2. They use your own stem cells not from a donor.

“3. The trial uses spinal and intravenous injections. It is double blind, so it might be the IV that I had was a placebo.

“4. I have not had any physio at all. My trips to Israel were very short.

“5. Time for results. Clearly this is a long-term project but the MRI show signs of decrease in demyelination.”

I admire Mark’s determination to beat MS, I hope he wins.

Like Mark, I long for a cure but am not at all confident that one is around the corner. I will be ecstatic if I am proved wrong.

 

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

A new National MS Society (NMSS) prevalence study estimates that nearly 1 million people have multiple sclerosis in the USA. And that’s more than twice as many as previously thought.

The new estimate is that 947,000 people have MS, compared with the long-accepted figure of 400,000.

Study results were published as “The Prevalence of Multiple Sclerosis in the United States: A Population-Based Healthcare Database Approach”. The poster was unveiled at the recent Joint ECTRIMS-ACTRIMS Meeting in Paris.

The findings are currently tentative, pending completion of a peer review and the prevalence study’s publication in a scientific journal. This could happen as early as next year.

prevalence study

Dr Nicholas LaRocca.

NMSS vice president of healthcare delivery and policy research, Dr Nicholas G LaRocca. has headed the MS Prevalence Initiative since its launch in 2014.

Speaking with Multiple Sclerosis News Today (MSNT), LaRocca said the findings were “definitely not what we expected.”

He told MSNT that the dramatic jump seen in the prevalence study has more to do with methodology than an actual rise in the number of MS cases — though he doesn’t discount that possibility.

“In the past, prevalence was looked at as the number of people diagnosed with a given disorder at a particular point in time. But people with a given condition don’t necessarily have the sort of contact with the healthcare system that would appear to generate a valid diagnostic report.

Prevalence study needs to look at several years

“In order to get an accurate estimate, you can’t look at one point in time or even a year or two, but several years. That really opened up the possibility that the numbers would be much greater than we anticipated,” LaRocca said.

The new NMSS prevalence study involved a working group of up to 20 epidemiologists, statisticians and neurologists meeting virtually every week. It cost $1 million.

It drew on data culled from five national databases. These were Optum, Truven Health Market Scan, Department of Veterans Affairs, Medicare and Medicaid. There was also one regional database, Kaiser Permanente of Southern California.

Together, these databases provided information on more than 100 million people — a third of the US population. Researchers reasoned that nearly all persons with MS, except the uninsured, would be captured in one of these programmes.

However, it does exclude children, Native Americans, undocumented residents, and prisoners. It also misses people who seek treatment at alternative medical clinics rather than through the healthcare insurance system.

The study showed an overall MS prevalence of a staggering 402.8 cases per 100,000 inhabitants. This is a significant increase from 58 per 100,000 in 1976, and 85 per 100,000 for the years 1989-94.

“When you’re talking about the unmet needs of a given population, if you don’t know how large that population is, it’s hard to effectively advocate for them,” La Rocca said. “It’s also important from a scientific perspective.”

Interviewed by MSNT, LaRocca pointed out that four decades have gone by since the last “really solid study” of MS prevalence in the US.

“The last time there was a really solid study of MS prevalence in the United States was 1976. Over time, that estimate was updated, adjusted and corrected, so that after a while it started to fray,” he 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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Care homes for older people housing younger people, some with MS

The MS Society has discovered 3,000-plus people under the age of 65 living in care homes for older people. And that includes younger people with MS.

So, almost one in seven younger adults in UK residential care could be living in homes not designed for them. Yes, it’s amazing, shocking, but true.

It’s clear that homes dedicated to older people don’t always meet the needs of younger disabled adults.

Living with significantly older people, often with complex conditions, can take its toll on younger adults with MS.  Such conditions tend to negatively affect their quality of life and mental health.

careThe society says that people with MS should have a choice of care, whatever their age and needs.

On its website, the society declares: “This is yet another example of a social care system in crisis.

“As part of our campaign to End the Care Crisis, we’ve launched a new report showing people with MS aren’t getting the essential support they need.”

Care crisis: What needs to be done

MS Society recommendations on the steps that need to be taken to improve the system are also included in the report.

It says:

We did a survey with the Care and Support Alliance (CSA) to find out how the British public feel about the care crisis. We asked them what they would expect if they needed social care themselves.

We found out:

 Six out of ten (61%) people believe the care younger disabled adults receive is embarrassing

 Three quarters (75) say they would be scared for their future if they became unable to look after themselves

 Eight in ten (79%) want the government to urgently fix the social care system

  People rank social care as the second most important issue facing our government compared to issues on a similar scale

care

MS Society chief executive Michelle Mitchell (pic: MS Society).

MS Society chief executive Michelle Mitchell said: “In 20 years, we’ve seen at least 10 government consultations and reviews on social care, but haven’t seen the change we urgently need.

“Our polling shows the British public is appalled by government inaction and believe our country must do better to support those who need help to live independently.”

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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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Needless deaths caused by government spending cuts

Health and social care spending cuts have led to 120,000 needless deaths over the last seven years. A report in the British Medical Journal exposed the dramatic figures.

Those are the very cuts that we with multiple sclerosis, Parkinson’s, and other diseases and disabilities, have consistently opposed.

The shocking total of the coyly named “excess deaths” is an indictment of UK governments since 2010. That includes the Conservative-led coalition of 2010-2015, the Conservative government of 2015-17, and the current one elected five months ago.

deathsBMJ Open, the online version of the journal, published a report of the paper: “Effects of health and social care spending constraints on mortality in England: a time trend analysis”. Johnathan Watkins of Pilar Research and Education, based in Cambridge, UK, was the lead author.

In its report, BMJ Open said:

The squeeze on public finances since 2010 is linked to nearly 120,000 excess deaths in England, with the over 60s and care home residents bearing the brunt, reveals the first study of its kind.

The critical factor in these figures may be changes in nurse numbers, say the researchers, who warn that there could be an additional toll of up to 100 deaths every day from now on in.

Between 2010 and 2014, the NHS in England has only had a real term annual increase in government funding of 1.3 per cent, despite rising patient demand and healthcare costs.

And real term spend on social care has fallen by 1.19 per cent every year during the same period, despite a significant projected increase in the numbers of over 85s–those most likely to need social care–from 1.6 million in 2015 to 1.8 million in 2020, say the researchers.

The spending restraints were associated with 45,368 excess deaths between 2010 and 2014 compared with equivalent trends before 2010.

Deaths related to cuts in social care funding

Most of these deaths were among the over 60s and care home residents. And every £10 drop in spend per head on social care was associated with five extra care home deaths per 100,000 of the population, the analysis showed.

These associations remained after further detailed analysis and taking account of global and national economic factors.

Changes in the numbers of hospital and community nurses were the most salient factors in the associations found between spend and care home deaths. From 2001 to 2010 nurse numbers rose by an average of 1.61% every year, but from 2010 to 2014 rose by just 0.07%–20 times lower than in the previous decade.

On the basis of the trends between 2009 and 2014, the researchers estimate that an extra 152,141 people could die between 2015 and 2020, equivalent to nearly 100 extra deaths every day.

The funds needed to close this ‘mortality gap’ would be £6.3 billion every year, or a total of £25.3 billion, they calculate.

So, Conservative cuts in social care spending have led to close to 120,000 people dying needlessly since 2010.

It’s a national disgrace.

And these figures do not include other deaths. For example, 2,400 Employment and Support Allowance claimants died within two weeks of being found fit for work. That was the figure revealed by the DWP in 2015, in response to a Freedom of Information request lodged by Mike Sivier of voxpolitical.com.

I wonder what the total is now, two years later.

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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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Sickness and disability benefit errors to cost £500m to correct underpayments

Errors in working out benefit payments mean 75,000 claimants are owed money that will cost £500m to repay. That’s an average of more than £6,000 per person.

The UK’s Department for Work and Pensions (DWP) actually found the mistakes itself. And they involve the country’s main sickness and disability benefit, the Employment and Support Allowance (ESA). People with MS claim the benefit – part of 2.5m sick and disabled who receive it.

benefit errorsAccording to the BBC, which was the first news organisation to run the story, the problem stems from assessors wrongly calculating the claimants’ incomes.

Now, I can understand occasional benefit errors being made, from time to time, but not anything on this scale. This is just not good enough.

According to BBC News, the mistakes could cost the government up to £500m to put right.

Too long to fix benefit errors

Government ministers know of the problem and claim the DWP is starting to pay the missing cash. But that is little comfort for those who have been deprived of the money to which they were legally entitled.

Apparently, the DWP discovered the mistakes last December, and has so far contacted about 1,000 of those who were underpaid. That is also not good enough.

It is now 11 months since the mistakes, that affect some 75,000 people, were detected – yet only 1,000 have been contacted. How can that be? And just how long will the department take to contact all of them and make the necessary payments?

The DWP says it is still trying to understand the scale of the problems with ESA. Well, the DWP has clearly mismanaged it, or not managed it at all.

Benefit errors of ‘historic proportions’

BBC News reports:

Frank Field, chairman of the Commons work and pensions select committee, said the problem was on a scale of “historic proportions”.

He said: “I’m still gobsmacked at the size and the nature and the extent and the coverage of people that have been wrongly impoverished by the department getting it wrong.”

The BBC understands that the errors affected people who applied for ESA between 2011/12 and 2014/15 – claimants after that date are understood to have had their benefit correctly assessed.

On top of money to be paid back, the Treasury will have to pay for the staffing and processing of repayments.

Is it really too much to expect that a country’s primary sickness and disability benefit be managed professionally and honestly? Of course, it isn’t.

Is it too much to expect that the DWP should capable of doing just that? Sadly, the evidence seems to prove that it is!

Overall, there are too many questions and not enough answers. The DWP should be ashamed of itself and its assessors. Heads should roll.

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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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Disability benefit: Government finally succumbs to judges’ decision

A government benefits agency, faced with a legal defeat seven months ago, has at last backtracked. It has finally decided to abide by the judges’ ruling. It is now to change how it makes decisions about a key disability benefit.

disability benefitThe UK`s Department for Work and Pensions (DWP)has backed down over the way it looks at claimants of the Personal Independence Payment (PIP). These include people with MS and other diseases, as well as those with other disabilities.

Even last week, the DWP was refusing to bow to the inevitable. It was sticking to its argument that PIP disability benefit claimants could only score points for being unsafe if harm was likely to occur on more than 50% of the occasions on which they attempted an activity.

That was despite the fact that, back in March, a panel of upper tribunal judges made a ruling. They said that DWP decision makers should look at whether there is a real possibility that harm might occur and also at how great the harm might be. The greater the potential harm, the less likely it needs to be that it would happen on any specific occasion, the judges said.

So, why has the DWP taken seven months to follow the legal decision and update its guidance? It’s ridiculous.

Rule change could affect 10,000 disability benefit claimants

The DWP says that an extra 10,000 claimants will benefit by £70 – £90 a month because of the change.

Penny Mordaunt, then minister for disabled people spoke in the House Commons earlier this month. She said: “In the case of existing claimants the Department for Work and Pensions will undertake an exercise to go through all existing cases and identify anyone who may be entitled to more. We will then write to those people affected and all payments will be backdated to the date of the change in case law.”

The DWP claims it is searching for thousands of claimants who have lost out because of the delay.

However, can you believe that the DWP will identify everyone who should receive a higher award, or any award at all if they so far get nothing. I certainly don’t believe it. Furthermore, I don’t trust the DWP to so what it says.

Therefore, if you think you were affected, I recommend that you get advice, You need to see if your disability benefit case can be looked at again. This is particularly important because the DWP may be focusing on claimants with epilepsy.

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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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Meeting with neurologist in Spain, after MS Nurse blocked me in UK

People with serious illnesses need specialist medical care. That may be stating the obvious but my experience leads me to believe that it is not always true.

I received my diagnosis of having multiple sclerosis in 2002 in the UK and began by seeing a neurologist every six months. However, after just a couple of appointments, I was referred to an MS Specialist Nurse. At that time, the neurologist said that if I needed to see him again, the nurse would arrange it.

Sadly, that tuned out to not be the case. When I did ask my MS Nurse to arrange for me to see a neurologist, the nurse asked me why. He said I used to have relapsing MS and now had secondary progressive, there was no treatment, so he saw no point in me seeing a neurologist.

Since moving to Spain, two years ago today, seeing a neurologist has not been on top of my ‘to do’ list.  Six weeks ago, though, I mentioned to my GP that I’d like to see one – and received an immediate referral.

Neurologist specialising in MS

Following an initial meeting on October 30, yesterday I had my first session with a consultant neurologist specialising in MS. This took place in Hospital Torrecárdenas, in the city of Almería.

deficiency

Hospital Torrecárdenas, Almeria.

There, in addition to my medical history, Dr Carmen Muñoz had the results of last week’s MRI scan and blood tests. And, on top of that, I was able to provide her with the MRI scans and full medical report produced by Dr Denis Fedorenko when I spent a few days at the HSCT centre in Moscow during October last year.

Regular readers may remember that, last year, Dr F told me that my lesions were inactive and that I was vitamin D deficient. From that point, I began taking a vitamin B supplement every day.

Yesterday, Dr Muñoz compared the new scans with last year’s. The good news is that there is no change. Not the same as far as vitamin deficiency, though.

True, the vitamin D level has improved slightly but it is still deficient. Added to that, now I am deficient in vitamin B12 too. So, from tomorrow, my vitamin D supplement dose increases significantly – and I also begin to take a B12 supplement.

Vitamins and deficiency

I decided to look at what deficiencies of the vitamins means.

Vitamin D helps regulate the amount of calcium and phosphate in the body. These are essential to keep bones, teeth and muscles healthy.

A deficiency of vitamin D can lead to bone deformities, such as rickets in children, and bone pain caused by osteomalacia, a softening of the bones, in adults.

Vitamin B12 has a crucial role in the production of red blood cells and DNA, as well as the functioning of your nervous system.

The effects of vitamin B12 deficiency can include: pale or jaundiced skin; weakness and fatigue; sensations of pins and needles; mobility problems; mouth ulcers and inflamed tongue; breathlessness abd dizziness; disturbed vision; mood changes; and, rarely, a high temperature.

Of course, many of these are common in MS regardless of any issues with vitamin B12.

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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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I am sorry. I didn’t know you have MS, and don’t understand what it is

“Oh, I am sorry.”

How often do you hear that? I am not referring to a normal everyday apology. No, I am talking about when someone hears, for the first time, that you have multiple sclerosis, or other serious illness or disability.

Now, don’t get me wrong, I am not criticizing the other person’s response. It seems to me to be as automatic as answering “I am fine thanks,” even when you aren’t. It’s just the way we are.

understandWhat they are really trying to say is that they are sorry to hear we have MS.

However, the “I am sorry” reply made me think about people’s attitude to, and what they understand about, multiple sclerosis. Indeed, if I think back, I must admit that I knew nothing about MS when the neurologist made his diagnosis 15½ years ago. Everything I now know about the disease, I have learned since then – much of it from experience of myself and others.

Trying to explain MS, what we go through, and the fact that we all experience it differently, is not easy. So, if we who have it find it difficult to put into words what we go through, just imagine how hard it must be for someone else to understand.

Understand the challenges we face

Think of the various challenges that we may have to deal with as part of MS. There is anxiety, bladder problems, depression, fatigue, foot drop, hearing loss, and heat sensitivity, memory loss or brain fog, muscle spasms, and muscle weakness.

Then there is memory loss or brain fog, muscle spasms, muscle weakness, numbness and tingling, pain, sexual dysfunction, and vision problems.

Of course, we don’t individually experience all of these.

Also, to the uninitiated, MS is MS. They tend not to know about the relapsing, primary progressive and secondary progressive types of the disease. Furthermore, even if they have heard of the names, they are unlikely to know what they mean. And that offers us another opportunity, and that’s an opportunity for us to head down another avenue of explanation.

Some of you may tire of answering questions about how you are affected by, and how you deal with, the problems thrown up by our unwanted companion. That I can understand, but I will continue to do my best, as someone with MS and as a journalist, to answer questions that anyone may have.

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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.HH

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