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50shadesofsun

News and Opinions about MS, Health & Disability

Benign MS: Is It Real or a Myth?

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What is benign MS? Does it even exist? Certainly it is not one of the types of the disease often listed as making up the multiple sclerosis family.

It is a term that is surrounded by controversy, not least among neurologists themselves.

Some believe that those who go 10 years without a significant disability are unlikely to reach the point where they need assistance to walk. In fact, they also believe people in this category may be able to stop treatment. Many neurologists, however, treat benign MS as a myth. They dismiss the classification and don’t make treatment decisions based on a “benign” designation.

benignWhen I was first diagnosed with MS, my neurologist at the time told me several things. My medical records indicated I had MS way back in my early to mid-20s, he said. At the time of my diagnosis, I was 49. He also said my MS was benign.

Because it had taken so many years to develop, he said, he saw no reason why it should develop faster in the future.

He was wrong.

My diagnosis was 15 years ago next month and, in the years since, the disease worsened more rapidly than in the previous 27 years. Of course, we do know that MS is a progressive illness.

So, what happened in those 15 years?

Walking

2002 – Slight difficulty with dragging left foot. Had to think about walking, every step. Walked unaided.

2017 –  Unable to walk more than 10 to 15 yards. Use wheelchair to travel any longer distance.

Standing

2002 – Not affected significantly.

2017 – Unable to stand longer than two to three minutes.

Stairs/steps

2002 – Slow but manageable.

2017 – Two, maybe three, one at a time, holding on to rail.

Getting up from sitting or lying down

2002 – No real issues.

2017 – Not easy but grab handles make it more manageable.

Driving

2002 – Able to drive manual car.

2017 – Only able to drive automatic car because my left foot could not make clutch pedal in an emergency.

Carrying and lifting

2002 – Still manageable but not as easy as it used to be.

2017 – Hopeless. Left hand can’t hold anything and arm too weak to lift. Right hand needs to hold onto something to make falls less likely.

Falls

2002 – Very occasional.

2017 – Much better than 10 years ago, my worst time. Falls are better managed now.

Bladder issues

2002 – Urgency and frequency problems, treated by medication. Wore incontinence pads.

2017 – Same medication, occasional use of pads.

Current health

Today, I know I have progressive MS. Although it has taken a firmer hold over the years, it could be far worse, and for that I am grateful. My most recent MRI (in Russia) indicated that all my lesions are inactive. This means that, while the disease is still with me, it is not rampant.

I certainly feel that moving to Spain, which has a sunnier climate and laid-back lifestyle, has been positive — and don’t forget a vitamin D supplement.

MS still makes an infection far worse, and it is likely to kick in a bout of fatigue. But, heh, you can’t have everything.

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

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50shadesofsun.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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After Long Wait, Zinbryta Gains Approval in Areas of the UK

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News that daclizumab, brand name Zinbryta, has been given the go-ahead to be available through the U.K.’s National Health Service (NHS) for treating relapsing MS, at least in part of the country, is good news. But why has the decision taken so long?

Possibly, because the first decision, last September, was ‘no.’

The latest decision by the National Institute for Health and Care Excellence (NICE) covers only England and Wales. Hopefully, similar announcements will be made for people in Scotland and Northern Ireland in coming months.

The decision means the NHS will have a legal obligation to provide the treatment to people with relapsing MS, whose health care professional prescribes it to them.

But there are conditions.

Patients must have either:

  • “Active” relapsing MS that’s been treated with another disease-modifying treatment, or;
  • “Rapidly evolving severe” MS (defined by at least two relapses in the previous year and an MRI scan showing new lesions)

And it will be available only to people who are unable or unwilling to take alemtuzumab.

Interestingly, the U.S. Food and Drug Administration (FDA) approved Zinbryta early last year and the European Medical Agency (EMA) followed suit in June, but it has taken another nine months for NICE to make up its mind. I find such a delay completely unacceptable.

Isn’t it time that countries around the world got together and presented a united front on new medications being brought out for the use of those of us who need them? Shouldn’t we consider such new treatments and give necessary approvals globally, not on a piecemeal basis, as we do now?

Of course, such revolutionary thinking is never likely to be taken seriously, as it would mean the dismantling of national organizations such as the FDA. Well, why not? On the other side of the Atlantic, there is one body that does the job for nearly 30 countries — the EMA.

If one organization can cover all Europe, why can’t an international one cover the whole world? Reducing the number of approval bodies should cut costs, too.

But it would need its decisions to include that medical insurance companies would have to pay for it to be provided to patients, and for it to be available through the NHS, without further consideration.

Could it work? Of course! Everything is possible. Will it ever happen? Not a chance

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

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[You are invited to visit my personal MS, Health & Disability website at 50shadesofsun.com].

50shadesofsun.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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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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Ocrevus: Counting Down to Expected FDA Approval

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There is now less than a month until the U.S. Food and Drug Administration (FDA) is expected to approve Ocrevus, generic name ocrelizumab, for use as a therapy for multiple sclerosis.

Clinical trials have shown Genentech’s drug to be a promising therapy for relapsing MS and, significantly, the primary progressive form of the disease for which there is no approved treatment.

ocrevusThe FDA is due to make its decision known March 28, which is quite poetic really, in that it is MS Awareness Month.

So, if everything works out, it looks as if Ocrevus, although not a cure, has all the makings of a wonder drug for MS, at least for most people who have the disease. That is because the vast majority of people with MS have the relapsing form, some 85% worldwide are diagnosed with this type..

However, if, like me, you have secondary progressive MS, then it seems Ocrevus will not be available. No claims have been made of Ocrevus having any effectiveness for our form of MS.

All drugs have side effects and this new one is no exception, but it seems that in all studies the most frequent side effects were mild-to-moderate reactions and infections related to the treatment’s injection.

But that is not enough information for me, and it should not be for you. I decided to dig a little deeper.

The UK’s MS Society says that not one of the Phase 3 trials reported any unexpected adverse side effects and in the Phase 2 relapsing remitting trial, serious side effects were rare and were comparable for all groups.

Wait a minute. Serious side effects?

The UK’s MS Trust also says they are rare and adds that opportunistic infections have not been reported in ocrelizumab MS trials.

Furthermore, in his article “Genentech’s Ocrevus: Pioneering The Progressive MS Therapy Landscape”, on Pharmaceutical Online, John Crowley, PhD, of Decision Resources Group, said: Ocrevus’ safety profile in MS program is very strong, but some question marks remain.”

It looks to me that, overall, the Ocrevus story is a very positive one.

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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MS is No Excuse for Being Discourteous When Offered Help

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It was a trip, plain and simple, neither my leg giving way nor a fall. It was MS-related because it was directly caused by foot drop; the toe of my left shoe caught on the tiniest ridge at the bottom of a ramp.

My trip wasn’t dramatic, I didn’t end up on my face. In fact, I simply sat down on a small retaining wall of a flower bed, about two or three bricks high. No fuss, Lisa even told me afterward that I had managed to sit down quite gracefully.

After sitting there for about a minute, I could have stood up and continued my way inside the restaurant for our meal and, back in the U.K., that’s exactly what I would have expected to happen.

Not here in Spain, though! No sooner had I come to sit on the low wall than two young men from a group at a table on the terrace, rushed up and helped me back to my feet. But that was not enough for one of them; he was determined not to let go until I was safely seated at a table inside.help

I expressed my gratitude in Spanish and he returned to his group outside.

Lisa and I enjoyed our meal, three courses plus a drink and a coffee for just 10€ each (about $10.50, or £8.50), which is nothing to complain about.

Eventually it was time to leave and, as we came out of the door, the same young man who helped me earlier again sprung out of his chair to escort me back to our car. This time, I had not tripped or fallen; he just wanted to help.

We exchanged a few words in Spanish (not too many as I am still learning the language, but enough to guide him to the correct car, make him understand that I needed to go the driver’s side and then to, once again, thank him for all his help).

Like many people who have MS or any other disability, I am keen to be independent. However, not so fiercely that I would be rude or cause offense to anyone offering help. Even those times when I do decline an offer, I always do so in a friendly way and make sure that it is obvious that the offer was appreciated.

You must have come across people who are discourteous when offered assistance, which they reject with a terse “I’ll be all right,” “I can do it,” or worse, “Leave me alone.” These people are doing no service to themselves or the wider community of people living with disabilities.

Yes, I have multiple sclerosis and, yes, I have a disability that sometimes necessitates using a wheelchair. But the disease does not have me, nor has my desire for independence robbed me of basic common courtesy.

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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