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News and Opinions about MS, Health & Disability

Cambridge scientist ‘on verge of curing multiple sclerosis’

A researcher from Cambridge University, UK, has made a discovery which could lead to a cure for multiple sclerosis. What’s more, she says it can tackle other diseases too.

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Dr Su Metcalfe of LIFNano (Photo David Johnson).

Dr Su Metcalfe was working at the university’s department of surgery when she made her big breakthrough. “I was looking to see what controls the immune response and stops it auto-attacking us,” she told the Cambridge News.

It all revolves around a stem cell particle called a LIF.

She explained: “I discovered a small binary switch, controlled by a LIF, which regulates inside the immune cell itself. A LIF is able to control the cell to ensure it doesn’t attack your own body but then releases the attack when needed.

“That LIF, in addition to regulating and protecting us against attack, also plays a major role in keeping the brain and spinal cord healthy. In fact, it plays a major role in tissue repair generally. It turns on stem cells that are naturally occurring in the body.”

It is a natural regenerative medicine, and plays a big part in repairing a damaged brain.

Stopping and reversing disease

“So, I thought this is fantastic. We can treat autoimmune disease, and we’ve got something to treat MS, which attacks both the brain and the spinal cord. It’s a double whammy that can stop and reverse the autoimmunity (disease), and also repair the damage caused in the brain.”

There was a problem, though. The LIF only survives outside the cell for 20 minutes before it is broken down. This meant there was not enough time to deploy it in a therapy.

The answer turns out to be nano-particles.

The particles were developed at Yale University, USA. Yale is listed as co-inventor with Su, but LIFNano has the worldwide licence to deploy them.

Su says: “Nano-medicine is a new era, and big pharma has already entered this space to deliver drugs while trying to avoid the side effects. The quantum leap is to actually go into biologics and tap into the natural pathways of the body.

“We’re not using any drugs, we’re simply switching on the body’s own systems of self-tolerance and repair. There aren’t any side effects because all we’re doing is tipping the balance. Auto-immunity (diseases) happen when that balance has gone awry slightly, and we simply reset that. Once you’ve done that, it becomes self-sustaining and you don’t have to keep giving therapy, because the body has its balance back.”

LIF clinical trials

LIFNano has already attracted two major funding awards, from drug firm Merck and government agency Innovate UK. Su has recruited chairman Florian Kemmerich and ceo Oliver Jarry, both with experience in the pharma sector. The company hopes to attract more investment, with the aim of starting clinical trials in 2020.

“The 2020 date is ambitious, but with the funding we’ve got and the funding we’re hoping to raise, it should be possible,” says Su.

What’s in store for LIFNano after MS?

“MS is our key driver at the moment, but it’s going to be leading through to other major auto-immune disease areas,” Su answers

“Psoriasis is high up on our list, and diabetes is another. Downstream there are all the dementias, because a LIF is a major health factor for the brain. So, if we can get it into the brain we can start protecting against dementia.”

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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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Wife who is carer is really a wonderful, loving, angel

It’s been an eventful few days for the two of us at home here in Spain.

On Saturday, nine days ago, my beloved Lisa asked me to help put the washing out to dry. It’s an easy job that I can do sitting down, so I readily agreed. The trouble was that it was not one of my best days. Thanks to multiple sclerosis, I managed to fall while walking out of the back door onto our terrace.

I still have no idea how but the nail of the big toe on my left foot was torn upright. It was 90 degrees from its usual position. There was pain and blood – and plenty of the red stuff.

carerMy wife Lisa is also my carer and is quite used to me spending time on the floor and could not see my injury, so she didn’t rush to my side. But she certainly arrived fast enough when I told her what was wrong.

In next to no time, she had stopped the bleeding and strapped up my toe. Luckily, once bandaged, the pain eased so that it only hurt if touched.

Wife and carer is an angel

A couple of days later, I visited our doctor. He removed the dressing and the nail came off with it. The wound started to bleed again but he quickly stopped it and sent me to a nurse to get it redressed. That started a series of one visit every two days, something I had to get used to here. The Spanish health service goes the extra mile to see that patients receive the best treatment.

However, these regular visits to the health centre are putting more stress on Lisa. Lifting my electric wheelchair out of, and back into, our car is a task that should not be repeated often. Meanwhile, at home, she is doing virtually all the work. She is my carer and refuses to ask me to help in case I am hurt again. In fact, while doing anything involving standing or walking is difficult, I try to do what I can.

One thing though, Lisa is always so grateful for whatever help I can give. But all she does for me makes her even more than my loving wife and carer.

She is my wonderful, loving, guardian angel who walks here on earth.

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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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Mixed messages about beta-interferon safety to treat MS

Research that is meaningful is essential. It is what, after all, what we need to find a cure for multiple sclerosis and other debilitating diseases.

However, a new study from the University of British Columbia, Canada, puzzles me. The study “Evaluating the safety of beta-interferons in MS” looked at potential adverse events when treating relapsing remitting MS (RRMS).

When the findings were published in Neurology, they came with a strangely conflicting narrative.

Let me explain.

Increased risk

The study found an increased risk of events such as stroke, migraine and depression, as well as abnormalities in the blood, when beta-interferon is taken for MS. The team discovered this by analysing the health records of more than 2,000 British Columbians with MS between 1995 and 2008.

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Professor Helen Tremlett.

So, that’s not so good. But Professor Helen Tremlett, senior author of the study, said that beta-interferons have a favourable safety profile, especially compared to the newer therapies for MS. And she added: “That is still the case; our study does not change that.

“However, very few studies had comprehensively and quantitatively assessed their safety in real world clinical practice. Our findings complement and extend on previous observations.”

Tremlett is a Professor in the department of medicine at the Djavad Mowafaghian Centre in Brain Health. She also said: “Once a drug is released on the market, there are very few ways to systematically monitor adverse events. 

“Clinical trials cannot identify all adverse effects of a drug treatment partly due to small sample sizes and relatively short follow-up periods.”

Beta-interferon research undermined?

So, the study shows that people taking beta-interferon for MS are at great risk of having a stroke, migraine and depression, as well as abnormalities in the blood. But they stress that patients and physicians should not change their treatment plans. They say that the risk to individual patients will vary greatly depending on individual factors.

To me that attitude, of ‘yes, the risks are greater but never mind’, devalues the results. In fact, to my mind, it undermines the whole study. The question I must ask is: why waste money on research if you are going to go against the results?

On the plus side, besides the negative effects, Tremlett and her colleagues made a positive discovery. They found a reduced risk of bronchitis and upper respiratory infections with taking beta-interferon for more than two years. These infections can be common and problematic for people living with multiple sclerosis.

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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 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. Diagnosed with MS in 2002, he continued to work until mobility problems made him 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. Besides that, he is a keen advocate on mobility and accessibility issues.

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Two new studies increase our understanding of MS

New studies may be good news for those of us living with multiple sclerosis as they increase understanding of it.

One pinpoints a mutation responsible for neurological dysfunction. Meanwhile, the second says high levels of a protein may contribute to MS progression.

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Professor Ian Duncan.

Ian Duncan is professor of neurology in the department of medical sciences at the University of Wisconsin-Madison. He has pinpointed the cause of a serious neurological disease. The disease is very similar to multiple sclerosis, and found in a colony of rats. The study, “A mutation in the Tubb4a gene leads to microtubule accumulation with hypomyelination and demyelination (pages 690–702)”, is published in this month’s Annals of Neurology.

The human disease, called H-ABC, can affect parts of the brain. Both conditions arise from mutations in the same gene. And both abnormalities affect myelin, as seen in MS.

Professor Duncan examined the nervous system tissue from both conditions and revealed an overgrowth of tiny tubes known as mircotubulas in oligodendrocytes,. These are the cells that make myelin and deposit it on nerve fibres.

Myelin defects are also at the root of the leukodystrophies — genetic disorders that include H-ABC.

Knowing how oligodendrocytes form and maintain myelin, and how those essential processes go awry, “could open a new window of understanding on the more widespread myelin diseases,” Duncan added.

Protein may encourage MS progression

The second study found that high levels of a protein called Rab32 may contribute to the progression of MS. And this could lead to neuronal loss.

The study, “Rab32 connects ER stress to mitochondrial defects in multiple sclerosis,” was published in the Journal of Neuroinflammation.

The endoplasmic reticulum (ER) plays a part in producing new proteins, and stores calcium. ER stress is a hallmark of MS and several other neurodegenerative diseases.

Now, researchers at the University of Alberta, Canada, suggest that the ER may play a role in triggering mitochondria impairment, leading to MS.

Professor Thomas Simmen.

Thomas Simmen, associate professor in the department of cell biology, is senior author. He said: “Scientists have been pointing to the mitochondria as a possible link to MS. But they have not been able to decipher how it malfunctions. Ours is the first study that combines clinical and lab experiments to explain how mitochondria become defective in MS patients.”

Using brain tissue samples from MS patients and healthy individuals, the team quantified levels of Rab32 and monitored neuronal death.

Results indicate higher Rab32 levels have links to an increase in ER stress proteins and inflammation in the MS brain. However, virtually no Rab32 was present in brain tissue from healthy individuals.

ER stress has strong links to an increase of Rab32 and MS progression that can lead to mitochondrial impairment and neuronal death. What’s more, these findings may prove useful in designing novel strategies to prevent neuronal loss in MS.

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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 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. Diagnosed with MS in 2002, he continued to work until mobility problems made him 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. Besides that, he is a keen advocate on mobility and accessibility issues.

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MS: Emergency hospital admissions continue to rise

Emergency hospital admissions for people with MS are rising in a major part of the UK. So says new research published by the MS Trust and Wilmington Healthcare. These admissions cause distress, and cost the NHS millions. Yet many could be avoided.

admissionsThe report shows that emergency hospital admissions for people with MS in England increased by 12.7% over the two years to 2015/16.

The latest English Hospital Episode Statistics (HES) data says there were 26,679 emergency hospital admissions for people with MS in England in 2015/16, compared to 23,665 in 2013/14, and this cost the NHS a total of £46m.

The report maintains that a large part of this emergency care could be avoided with better proactive, preventative healthcare.

Report is staggering

Some of the report’s findings are staggering. Of people with MS who had an emergency admission to hospital in 2015/2016:

  • Urinary tract infections accounted for 14% and cost £2,639 per patient;
  • Respiratory issues cost the National Health Service (NHS) a total of £5.4m;
  • Bladder and bowel related issues cost £10.4m.

The report found that 20% of 89,030 people with MS in England were admitted to hospital as emergencies in 2015/16. The average cost per admission was £1,733 and the average length of stay was 8.2 days.

Wilmington Healthcare’s Commissioning Excellence Directorate CEO Sue Thomas said: “Our latest report shows that the problems we highlighted in our original 2013/14 analysis have increased in the past couple of years. A growing number of patients with MS go to hospital for emergency care; yet many admissions could be avoided.

“Preventative care strategies for people with MS must be reviewed in order to tackle problems, such as respiratory and urinary tract infections, at an early stage to try to avert the need for emergency care. This would not only be of huge benefit to patients, it would also reduce pressure on struggling A&E departments.”

MS Trust ‘disappointed’ that admissions are increasing

MS Trust chief executive Pam Macfarlane said: “It is disappointing to see that avoidable emergency hospital admissions for people with MS have continued to rise in 2015/16.

“Last November, the MS Trust brought together partners from across the MS sector to publish the MS Forward View consensus. This showed that people with MS need a flexible blend of care, comprising disease modification and also proactive symptom management and neurorehabilitation, delivered by multidisciplinary teams.

“This is one reason why we are now funding additional MS nurses in areas of the UK where services are the most overstretched. Only with the right specialist and community based support will we reduce the need for emergency hospital care for people with MS,” she 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, who 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. Diagnosed with MS in 2002, he continued to work until mobility problems made him 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. Besides that, he is a keen advocate on mobility and accessibility issues.

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MS, Combined with Flu, Had Me on the Floor Again

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MS, Combined with Flu, Had Me on the Floor Again

One thing we do know, though, is that influenza can make us feel worse. MS Society sites around the world agree the flu pushes up our temperature and can make symptoms flare up. And, for those who experience relapses, an infection like the flu can trigger one.

Having progressive MS, relapses are not part of my life, but my symptoms certainly can flare when I am hit by an infection.

And that is exactly what happened over the weekend when I finally succumbed to the same flu that my wife had been suffering from for a few days.

I suppose my two most obvious symptoms are problems with mobility and balance and these certainly were much worse at the height of infection. I fell getting out of my armchair and again in our bathroom, both times taking many minutes to get back onto my feet as my strength deserted me in my time of need. If it had not been for the physical help provided by Lisa, my loving wife, my time on the floor likely would have been much longer.

After my second fall, she insisted that I sit in our bathroom chair, which is on wheels. Although still unwell herself, insisted on pushing me between living room, bathroom and bedroom. She said her motives were a little selfish as it was easier to push me about than help me recover from another fall.

Flu jab protection?

So, if the flu can have such a bad effect, should we take advantage of the protection offered by have the annual flu jab?

Well, when I lived in the U.K., I used to follow the advice of doctors and the country’s MS Society that recommends that people with MS have a seasonal flu jab every autumn. It says: “This is before the flu season starts around November. But it’s still worth having one later than that. Carers and partners can get a flu jab too.”

But that is in the past. No more jabs for me.

Why the change? Let me assure you that it is nothing to do with efficacy of the vaccines or their general safety for most people.

Instead, it is all about their safety for me. Regular readers may recall that in October I spent time in Moscow having medical tests at the A.A. Maximov center that provides HSCT treatment, including patients with MS and other autoimmune diseases.

There is no need to go into detail of what went on, but one of the key findings was that my MS lesions are all inactive and the recommendation made by Dr. Denis Fedorenko, MD, to minimize the risk of reactivating them, was that I should have no vaccines. None at all, not even the flu jab.

I want to emphasize that this is NOT advice for you. Everyone is different. Make sure you get our own medical advice.

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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Some MS dates for your 2017 diary

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MS

Happy New Year

Yes, it has arrived at last and so, today, I bring you a calendar of notable events that are planned for the next 12 months. Please note that this is not meant to be a complete or exhaustive list, just those I have picked out for your diaries.

To make it easier to find out more details, each event listed below includes a link to the organiser’s website.

February

22-23 Advanced Curriculum for Multiple Sclerosis, A pre-ACTRIMS Forum 2017 program, Orlando, Florida, USA.

23-25 ACTRIMS Forum 2017, Orlando, Florida, USA.

March

Multiple Sclerosis Awareness Month, USA – The Multiple Sclerosis Association of America (MSAA).

3-9 MS Week, UK.

7-13 MS Awareness Week, USA.

23-26 11th World Congress in Controversies in Neurology (CONy), Athens, Greece. (MS March 24).

May

Multiple Sclerosis Awareness Month, Canada.

19-20 EMPS (European MS Platform) Spring Conference, Athens, Greece.

24-27 CMSC (Consortium of MS Centers) Annual Meeting, New Orleans, Louisiana, USA.

31 World MS Day 2017. The theme will be ‘Life with MS’.

October

25-28 Seventh joint ECTRIMS (European Committee for Treatment and Research in MS) ACTRIMS (Americas Committee for Treatment and Research in MS) meeting, Paris, France.

All the very best for the 12 months ahead, wherever you are.

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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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Phoebe Scopes, British HSCT Pioneer in Moscow, Part 2

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Last week, I introduced you to Phoebe Scopes, the very first MS patient from another country to undergo hematopoietic stem cell transplantation (HSCT) in Moscow. Today, in Part 2,  we pick up the story of the 46-year-old who lives in London.

Ian: So, you had done lots of research. How did things then develop?

Phoebe: By late 2009, I had new challenges affecting my balance, coordination, strength and energy which eventually forced me to hang up my boxing gloves. I was devastated about this but still felt I would return to it in time.

Unfortunately, after having a bike accident and a relapse in 2010, my MS appeared to be behaving more aggressively, and I believe that around this time, I transitioned from relapsing remitting (RRMS) to secondary progressive (SPMS). By now, my EDSS (Expanded Disability Status Scale) was fluctuating around 5.5.

It was quite unsettling just how quickly MS disease seemed to take a significant hold as disability quietly crept in, but I refused to be distracted and continued with research.

Ian: How did you find out about HSCT? What attracted you to Moscow? What was your experiences with neurologists at home when deciding to have the treatment?

Phoebe: I came across some news about a lady in Australia that would shortly receive HSCT to cure her MS. I read more information and details about this and realized that I had previously stumbled on the procedure briefly some years before. I had read news that a patient in London received HSCT, contracted sepsis and lost her fingers and toes in the battle to save her life.

At that time, I had been blind to this disease called MS so this news had no relevance to me, but I do remember thinking that the treatment, which involved radiotherapy, was terrible and I would never have something as dangerous as that!

Fast forward to recent years. I was glad to hear that for HSCT, radiation had been replaced with chemotherapy which, although still a serious treatment, appeared to be a safer option.

I was excited that there was at last a treatment that talked about curing MS that didn’t involve a lifetime of interferons and steroid use.

Now struggling with relapses and fatigue, I was very interested to receive treatment and was learning that the most effective results were achieved when the therapy was used early. I found and joined a HSCT forum and from there, wasted no time communicating with others.

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Dr Fedorenko with Phoebe during her treatment. (Pic: Phoebe Scopes).

At that time, there were few places offering HSCT privately and the questions about safety were never too far away. There was also a great deal of variation in the price of treatment from one facility to another, but most places were expensive anyway and were very selective about the patients they accepted.

I learned from a group member that a facility in Moscow was thinking about opening its doors to treat overseas patients and their price was more reasonable, but this facility did not yet have a specific department designated to handle foreign clients.

I called the hospital in Moscow and requested an email address of the doctor who was responsible for HSCT inquiries and once I had these details, I wasted no time introducing myself, scanning and emailing relevant documents, and basically asking as many questions as I could.

In the meantime, I also requested an earlier appointment with my neurologist to share my findings and let him know that I wished to pursue HSCT.

As I sat across from him in his clinic, my neurologist told me that he would not authorize or refer me for this treatment because I had not first used immunomodulation therapy offered to me on a number of occasions.

He also advised me that I would be ripped off if I were to go to Russia or anywhere else abroad, and that HSCT would kill me.

I was shocked and stunned by my neurologist’s unprofessional and “unkept” response. His comments had an air of panic and concern — but not about my safety. Instead, I wondered whether he was worried about the security of his job going forward if news about HSCT got out!

Next week, in Part 3, Phoebe takes us on her visit to Moscow.

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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Meet Phoebe Scopes, First MS Patient from Abroad to Undergo HSCT in Moscow

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Hematopoietic stem cell transplantation, or HSCT for short, is provided at various centers around the world to a mix of people with multiple sclerosis.

As regular readers know, two months ago I visited the impressive facilities of the A.A. Maximov Department of Hematology and Cellular Therapy, at the National Pirogov Medical Surgical Center in Moscow. There, besides meeting Denis Fedorenko, MD, and his staff, I was able to mix with patients from the U.S., Great Britain, Australia, Norway and Italy.

But the Moscow center did not start out treating international clients. On my return home, I  got in touch with a woman who was the very first patient from another country (Great Britain) to be given HSCT for multiple sclerosis.

Her name is Phoebe Scopes. She is 46 years old and lives in London. This is the first part of her story, exactly as she told me.

Ian: Phoebe, what was your MS history prior to HSCT?

Phoebe: After experiencing almost a year of intermittent sensory abnormalities and bouts of fatigue, I was eventually diagnosed with relapsing-remitting multiple sclerosis in early 2008. With exception to these episodes, I was free of any disability during this time and, for a while, I merely considered MS as a minor and occasional interruption in my life.

Phoebe Scopes

Before diagnosis, I had heard of MS but had no idea what it was. But knowing more about it now, I understand that I was experiencing small, infrequent relapses. Thinking back, it is also extremely likely that the optic neuritis I experienced briefly six years before diagnosis was a sign and had occurred during the benign stage of disease.

I am a mother, wife and designer, and was very fit and active. I cycled six miles a day to and from work, I was a fitness boxer for 13 years and, in early 2009, a year after diagnosis — now with an EDSS of about 3.0 — I took part in a 100-km, eight-day trek across the Sahara desert. The trek was extremely challenging, but I had one of the best experiences of my life. The Sahara trek was one of those things on my bucket list, so I was also very grateful to have been able to do this before further disease accumulation.

Having experienced and overcome various illnesses growing up, I just considered MS as another one of those medical hurdles that I needed to jump over. I was no stranger to hospitals, illnesses and treatments, but for over 10 years, I had been drug- and symptom-free, always opting for nutritional intervention to maintain well-being.

My initial relationship with medications to treat those conditions brought a host of side effects, so I was reluctant to use anything for my MS, but felt overwhelmed about having this ‘incurable’ disease. One such side effect on some of the MS drugs was feeling very tired and drowsy all the time, which seemed to disable and restrict me more than the relapses I was having. So, I declined all the other drugs being offered by my neurologist, who regularly urged me to start taking them.

I would turn up to [the] clinic with articles, or would ring my neurologist to tell him about my findings regarding the drugs he wanted me to take.  The articles usually, to an extent, contradicted his information so I think that my neurologist considered me a bit of a troublemaker! So, instead of the drugs, I started researching and looking at other therapies that could help arrest my MS and tackle minor difficulties that I was beginning to encounter.

My research took me and my husband to various places in Europe and the United States, where I met and spoke with some interesting people. And while the therapies I had were initially effective, their results were short-lived. Some might call this the placebo-effect, and maybe this was the case with some, but not all, the therapies.

I just think that MS is a very complex disease of which no two people are affected in the same way, and most of the time, some of these therapies or treatments need to be repeated a few times before they stick!

Next week, I move to 2009 and beyond in Part 2 of Phoebe’s story.

This story, written by me, was first published by 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/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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