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50shadesofsun

News and Opinions about MS, Health & Disability

Home from Moscow, strangely contented

Yesterday was a long and tiring day, returning home to the sunny and south of Spain from the colder temperatures found in Moscow.

With the help of two members of the support team, I left the hospital at 7am, which was 6am in Spain, eventually getting home at 10.30pm. Believe me, 16½ hours of travelling and layovers is a tiring experience which is probably why it was gone midday before today woke me from my slumbers.

Being in Russia, in the AA Maximov HSCT clinic, was an experience I am glad to have had, but nothing comes up to the delight brought about by being home again. Home with Lisa, the love of my life.

In the clinic, bonds are quickly established between patients at various stages of the process and, even though only there for assessment, I immediately found myself welcomed as one of the community.  And I now have new Facebook friends so we need never lose touch.

MRI brain scan. This is a stock picture,not one of mine,

MRI brain scan. This is a stock picture,not one of mine.

Several people have sent me comments since my assessment result was revealed – that I would not be accepted to have HSCT. Some have said how sorry they are that I cannot have the treatment; others have expressed their pleasure that the MRI scans showed that my lesions are inactive and that my future is looking good according to Moscow’s Dr Fedorenko.

So, how do I feel? Strangely, contented.

The fact that my lesions, which exist in both brain and spine, are inactive is great news in itself. And to have Dr F tell me that my prognosis for MS is no, or in the worst case very slow, progress is something that I had never dreamed could happen.

So, in short, I am in a good position.

On top of that, I had so many checks on various internal organs that I know now exactly what is wrong in much more detail than before.  The scans, x-rays and other tests – also show that there is nothing unwanted, nothing that should not be there.

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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-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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Moscow calling – day five

My adventure in Russia, staying at the AA Maximov centre, that provides Hematopoietic Stem Cell Transplant (HSCT), is over. Friday is devoted to flying to Spain and then a 3 hours 40 minutes coach journey home.

You’ll probably know that my trip to see Dr Fedorenko, Anastasia, and the incredible team was to have various medical checks and a clinical assessment. This was because both my wife Lisa and I are convinced of the value of the therapy and wondered if I could have it. Doubts existed because I have a heart condition among other medical hurdles.

Dr Denis Fedorenko with assistant Anastasia Panchenko.

Dr Denis Fedorenko with assistant Anastasia Panchenko.

So, I arrived early Monday morning to start the most intensive series of medical tests in my life. They were carried out on my brain, spine, chest, abdomen, heart, lungs, kidneys, liver, veins, blood and urine. I was MRI scanned, nuclear scanned, x-rayed, and more.

It was a busy few days that drew to a close yesterday afternoon when Dr Fedorenko came to give me the results.

On the plus side, although I have a progressive MS, the disease is not actually progressing at the moment as all the lesions are inactive. In fact, Dr F told me that the MS might not progress further but, if it does, it is likely to do so extremely slowly. He also said my age is on my side. Childhood MS is very aggressive but in older people it isn’t. Hmm, does that mean at 63 that I am an ‘older person’? Ouch! (Nudge by Lisa to remind me that I’ll be 64 in less than four weeks; thank you for the reminder sweetheart!)

On the negative side, the tests revealed that the intensive chemotherapy that is a vital part of HSCT would be an unacceptable risk for my heart. In a nutshell, HSCT is not for me or, at least, not for my heart while the MS remains inactive.

Am I disappointed? Yes, that I cannot have the treatment that I consider to be the best we have available. But No, having discovered that I have no active lesions, and being armed with the comprehensive file of results to give to my doctors as well as a list of recommendations made by Dr F himself, I feel relaxed.

Everyone who goes through the transplant procedure is presented with a New Life badge adorned by an iris flower. I saw him present these at Thursday’s birthday party. Yesterday, in a parting gesture, he thanked me for supporting HSCT and pinned one to my polo shirt.

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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-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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Moscow calling – day four

Wow, Thursday already, the last day of my clinical tests. Just one to go this morning, a nuclear heart scan.

This is an unknown procedure to me but checking with the US National Heart, Lung, and Blood Institute revealed all. It says:

A nuclear heart scan is a test that provides important information about the health of your heart.

For this test, a safe, radioactive substance called a tracer is injected into your bloodstream through a vein. The tracer travels to your heart and releases energy. Special cameras outside of your body detect the energy and use it to create pictures of your heart.

Nuclear heart scans are used for three main purposes:

  • To check how blood is flowing to the heart muscle;
  • To look for damaged heart muscle;
  • To see how well your heart pumps blood to your body.

So, now we know!

Almost time for American filmmaker Brandon Fowler to receive back his stem cells. He was one of three celebrating his stem cell birthday yesterday, October 12.

Almost time for American filmmaker Brandon Fowler to receive back his stem cells. He was one of three celebrating their stem cell birthday yesterday, October 12.

Talking of ‘knowing’, the moment of truth will arrive this afternoon when Dr Fedorenko will explain all the results and say whether or not I am suitable to have HSCT. Despite the doubt expressed in yesterday’s post, active lesions are NOT a prerequisite in Moscow, so that alone won’t go against me.

Now, it’s just a case of ‘wait and see’.

Three patients here had their stem cells returned to them yesterday and so, in accordance with tradition, everyone here got together to celebrate their ‘stem cell birthday’. Dr F led the proceedings, congratulated those involved and said that yesterday three more people were free of MS. It was quite a moving get-together in which I was delighted to take part.

In Moscow, the HSCT patients and staff at the AA Maximov centre become a family (no, that’s not too strong a word for it), into which I was warmly welcomed. Whatever happens this afternoon, whatever the outcome of my assessment, being a member of that family will stay with me forever.

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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-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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Moscow calling – day three

Wednesday marks the halfway point in my journey of tests and clinical assessment at the AA Maximov centre in Moscow. Of course, I am looking forward to getting the results, although the MRI scan results are known already.

The programme of tests is not complete yet but most are now behind me.

Yesterday was the most intensive day of the week, with tests on my urine and blood, lungs, x-rays, ultrasound and the 24-hour cardiac monitor that was removed in my room this morning before I even got out of bed.

My left knee gave way last night, in my room, meaning that there was a close encounter with the floor. This is nothing unusual for me but it caused consternation among the staff, one of whom was just passing my door when It happened. Even though it was nothing out of the ordinary for me, it was still the first thing that Dr Fedorenko talked about when he visited me this morning.

mriMore importantly, part of that discussion concerned the results of my MRI scan from two days ago. It’s important to remember that this was the first such test since my diagnosis 14 years ago.

The scan showed lesions, some quite large he said, but added that they are not active.

Active lesions, those that are just forming or expanding, can cause a wide variety of symptoms, depending on where they are located and how big they are. Inactive means exactly that, they are not growing and so the MS symptoms should not be increasing nor worsening significantly.

I know that results of the MRI scan mean that HSCT is unlikely for me, as active lesions are almost always a prerequisite of the treatment. Still, news that there are no active lesions needs to be looked at positively.

Dr F is not expecting my symptoms to deteriorate quickly or at any time soon.

Another positive outcome of this series of tests is that I will have received the most thorough, most comprehensive, health check of my life so far. I say ‘will have’ because they are not finished yet.

More news tomorrow.

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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-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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Moscow calling – day two

It’s Tuesday morning and a busy day lies ahead of me here in the AA Maximov centre in Moscow. That’s what Anastasia told me yesterday afternoon as she was about to go home after a 10 hour working day that started at 7am.

And, as if to prove it, this morning I was wakened by a nurse so to give a urine sample. Next, it was time for blood tests but eating until after the samples had been taken. In a bizarre bit of psychological torture, there was a warning that the catering staff may bring my food but I was not allowed to touch it until told it’s ok to do so.

As it has turned out, Galina arrived and took nine blood samples before my breakfast arrived. Yes, nine samples! No idea what tests are being carried out but I have never had so many samples taken before. It certainly seems to be thorough. Still not allowed to eat though, other tests demand that too!

Last night, well early evening, I went through the MRI scanning procedure. Because many people don’t like going into the confined space of the ‘tunnel’, Dr Fedorenko offered me a sedative but I knew what to expect and declined politely.

It was just as well as, even without a sedative, my own snoring woke me three times during the hour long scan. You can tell, I was really tense!! Actually, the only problem was that restless leg syndrome, that often attacks in bed, decided to kick in.

Talking of Dr F, he and I met several times yesterday. We had, of course talked before when I interviewed him for Multiple Sclerosis News Today – but that was by telephone, so it was good to meet face to face.

It was immediately obvious that my previous impression of the man, as dedicated and compassionate, was entirely accurate. Moscow HSCT veterans often describe him as kind and lovely, I can see why and, like them, am happy to have him looking after me.

Dr Denis Fedorenko.

Dr Denis Fedorenko.

We had a chat about my own case and he said that the whole point of all the tests are to see whether or not the benefits of HSCT will outweigh the possible disadvantages in other areas, such as my heart. He explained that chemotherapy drugs, a vital part of HSCT, could have negative effects on a heart with different problems. Atrial fibrillation, he continued, is not in itself a contraindication but he wanted to be sure that there was no other problem.

“MS is a chronic disease that HSCT can cure,” said Dr Fedorenko, “but it is a disease that does not kill.”

He continued: “Our two aims here are to stop MS and improve quality of life. There is no point stopping MS if the therapy is likely to cause or add to problems elsewhere.”

To him, the outcome of the treatment is more important than relieving patients of the $50,000 currently charged.

Dr Fedorenko cares!

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Moscow calling – day one

Hi there, one and all. Greetings from Moscow.

I am sitting inside the AA Maximov Centre, one of the world´s leading providers of Hematopoietic Stem Cell Therapy (HSCT), after a journey involving one lengthy coach trip and two flights.

The plane from Madrid touched down five minutes early at 5.10 this morning. And that was quite a shock, having left home with the temperature in the mid 20s celsius, in Moscow it was just 2 degrees when we arrived.

I was met at the airport and was whisked around the city highlights before being taken to the hospital. Among other things, he showed me were Red Square, the Kremlin, the Bolshoi Ballet and what use to be the headquarters of the KGB.

I have already met Dr Denis Fedorenko’s assistant Anastasia Panchenko and I am due to meet the good doctor later. Tests start today and will continue until Thursday to determine if I am medically suitable to have HSCT at some point in the future.

My plan is to write a few words every day, so stay tuned to 50shadesofsun.com.

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ian profile50shadesofsun.com is the personal website if Ian Franks, who is Managing Editor (columns division) of BioNews Services. BioNews is owner of 50 disease-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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Can a healthy diet help MS? Yes, but it’s not a cure

Diet? Me? No. we just don’t get along. Try to lose weight, have some minor success, then get disillusioned when the diet continues but the weight plateaus out. Sound familiar? And you end up back where you started or, horror of horrors, even heavier.

And I have never paid much attention to people saying that diet cured them of MS. In fact, it’s nothing short of hogwash. That’s not to say that diet cannot help, just that it is not a cure by itself.

A few weeks ago, this site carried news that Lisa and I were going to start eating a totally healthy and balanced vegetarian diet.  Not one that has been sold to us but one that we decide for ourselves.

Before going further, l must make it quite clear, our decision to go vegetarian was not a desire to lose weight, there were no allergies involved, and we both actually like meat. Our motivation was purely the horrendous way we, as humans, treat other sentient beings with cruelty and contempt.

Hamburgers? No, no meat in these tasty veggie burgers.

Hamburgers? No, no meat in these tasty veggie burgers.

Having said that, how is our veggie adventure going? In short, amazingly well.

Lisa loves cooking and now uses her skills to create the most wonderful tasty meals that are nourishing and have a great balance of protein and everything else we need – minus the animal fats.

Must admit to having misgivings at first, but the dishes that are new to my palate are fantastic. We don’t just eat a plateful of vegetables, there’d be no enjoyment in that. There is so much that can be done in the kitchen, we have not even touched soya yet.

So, have we noticed any differences yet? Well, it’s early days yet but we are both delighted to have lost a bi of weight. Lisa has lost two kilos (almost 4.5lbs) while I am down to 105.8kg (that’s 233.25lbs to my American readers and 16st 9.25lbs to my British ones). Whatever way you say it, that’s my healthiest weight for too many years to remember. A few years ago my weight was more than 120kg (266lbs, 19st). A heart scare prompted my first step, the initial loss, and our new vegetarian way of life is helping me take the second.

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

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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ian profile50shadesofsun is the personal website of Ian Franks who is Managing Editor of the columns division of BioNews Services. BioNews is owner of 50 disease-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 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. Besides MS, he 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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Two days to Moscow

With only two days to go before leaving home and travelling to Russia, to go to the AA Maximov Centre, that is one of the world’s leading providers of Hematopoietic Stem Cell Therapy (HSCT), you’ll no doubt forgive me for being a bit preoccupied at the moment.

Not that I am going there for the treatment, at least not yet. This time I’m just going for just four days, to undergo a series of tests as part of an assessment to see if I can have HSCT.

You might be wondering why that is necessary. Well, for most people it isn’t.

The Maximov centre in Moscow is one of the world's leading providers of HSCT.

The Maximov centre in Moscow is one of the world’s leading providers of HSCT.

However, in my case it is not so simple.

Unlike most people with MS, I have not had regular MRI scans two or three times a year; in fact, not even once a year. The truth is that apart from the scan that I had leading to my diagnosis 14 years ago, I have only had one more scan – and that was for a heart problem, not MS.

Interviewing Dr Denis Fedorenko a few months ago for Multiple Sclerosis News Today, our conversation touched on my health and my suitability to have the treatment that his centre offers. From what he heard, he said that he needed to carry out tests before a firm decision could be made.

I am firmly of the opinion that HSCT is the best treatment currently available for MS, so that is the reason that my emotions about this trip are a mixture of both hope and trepidation.

 

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Just two weeks to fight for MS treatment

Anyone wishing to take issue with the draft recommendation to not make daclizumab1 (Zinbryta) be made available as a treatment on the NHS in England and Wales has just 15 days to do so. Comments must be received by Friday October 21.

So, if you want a change of heart, don’t delay. The time to stand up for MS patients is now!

The UK’s National Institute for Health and Care Excellence (NICE) is responsible for evaluating new drugs and treatments, along with their costs. It then makes recommendations as to whether or not they should be available through the country’s National Health Service (NHS) in England and Wales. Other parts of the UK have their own guidance bodies.

daclizumabIn a document published on the NICE website, the appraisal committee’s preliminary recommendation states: “Daclizumab is not recommended within its marketing authorisation for treating relapsing forms of multiple sclerosis in adults.”

The committee was critical of the analysis submitted by the manufacturer of the cost effectiveness of daclizumab, compared with other disease modifying treatments.

The NICE appraisal committee is scheduled to have another meeting on November 2. It is expected to review the comments received together with further evidence from the manufacturer.

NICE is expected to publish its final guidance next year.

1 Daclizumab is an experimental drug treatment being developed for relapsing MS. It is taken as an injection under the skin, once a month. In clinical trials, daclizumab reduced relapse rates by approximately 50% compared to placebo and by 45% compared to beta interferon. The drug was licensed in Europe in July 2016.

Serious infections, serious skin reactions and impaired liver function occurred more frequently in people treated with daclizumab than in other treatment groups.

 

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Out and about by myself

By way of a change, I went out and about by myself yesterday morning. I went down our road, turned the corner and then quite some way down another road to see a couple with whom Lisa and I are friends.

The journey was well beyond my walking limit. I even have to sit down halfway from our door to the car in the drive and that is walking with the aid of a stick/cane. Any distance longer than that and Lisa has to  push me in my manual wheelchair. She doesn’t mind but it makes me feel so dependent

Yesterday, though, Lisa stayed at home and I went alone. It was exhilarating, it was fun.  No, I hadn’t made some sort of miraculous recovery.  wish I had but no, multiple sclerosis is still, regrettably, very much part of my life.

Yesterday’s freedom, and that was not the only example, was because I had just taken delivery of one of those fantastic all-singing, all-dancing lightweight folding electric wheelchairs. I had ordered one from Shaun Atkinson at Better Products for Disabled People it actually arrived on the promised day; amazing. My first impressions are that it is everything it is claimed to be – but I’ll be writing a full review once I have used it for a while.

06 blueI had already taken it out of our home, folded it up and somehow managed to place in in the back of the car. Today, it was taken it out of the car and unfolded it before I powered my way down to see our friends. Tremendous.

Then I reversed my journey and, having folded the chair, needed to sit down for a few minutes before having enough energy to lift it back into the car. But, in the end, I did just that.

Earlier, I used the wheelchair in our nearest town, when we went to see our doctor before enjoying breakfast in a local café bar.

As regular readers of this site know, I am travelling to Moscow this Sunday to undergo medical tests and assessment to determine whether or not I am likely to benefit from HSCT at a future date yet to be determined. My new chair is coming with me which will give me the independence I need in a foreign city.

 

 

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