Birthday presents: True diagnosis and a possible treatment

It was a strange day, well, certainly out of the ordinary!

I am talking about last Friday, November 8, 2019. First of all, it was my birthday (yep, now 67, getting on a bit) but it was also the day I had to see my neurologist for my regular MS check-up. Not the day I would have chosen for the appointment, but it was definitely one I couldn’t forget.

Prior to the trip to see the doctor, I had undergone a new MRI scan, and the full range of blood and urine tests.

The MRI scan confirmed that the lesions in both my brain and spinal cord remain inactive, as I was first told by Dr Fedorenko (pictured, left) in Moscow three years ago.

Laboratory tests on blood and urine proved to be normal – a description of me that my ever-loving wife Lisa finds somewhat unbelievable – with even vitamin D having recovered from ‘deficient’ to ‘sufficient’ with the help of supplements that the Spanish neurologist had previously prescribed.

We discussed my current abilities and disabilities, she asked me to demonstrate my leg and arm movements, and then she said I could have treatment to stop further deterioration but emphasised it would not do more than that.

Hospital Torrecárdenas, in Almería, where my neurology appointment took place,

Wait, what? For the very FIRST time since MS was diagnosed in April 2002, I was being offered a treatment which could slow its progress.

So, what was being suggested? Her first choice was Rituximab but I was unhappy as I know it has a high risk of unwanted side effects. Her second choice was Imurel (azathioprine), an oral medication more commonly used against lupus. I have not started that yet, so we’ll have to see where that goes.

Why such a long wait?

The question that remains is why it has taken more than 17½ years for me to be offered any MS treatment instead of just medications for pain, urine control and the like.

Well, let’s look at that!

Back in 2002, in the UK, the diagnosing neurologist said I had benign MS. Of course, back then I didn’t have the knowledge I have today. So, I didn’t know then that ‘benign’ is not a true type of the disease.

After three or four visits to the neurologist, he referred me to an MS specialist nurse, assuring me that Andy, the nurse, would arrange a neurologist appointment if I wanted one.

Visits to the nurse generally took the form of “why are you here?”, not a great start. Eventually, I asked to see a neurologist again but was told: “You had RRMS (relapsing), now you have SPMS (secondary progressive), there is no treatment, you don’t need to see a neurologist. He can do nothing for you.”

And that was that, except to say that the MS nurse is no longer in that position!

Later, while writing for Multiple Sclerosis News Today, I interviewed Dr Patricia Coyle (pictured, left) for an article for my column in the web-based digital publication. Dr Coyle is the Founder and Director of Stony Brook’s MS Comprehensive Care Center, in Stony Brook, Long Island, New York. She has several decades of experience with nervous system immune-mediated and infectious disorders. She has been involved since medical school with patient care and research focused on MS.

Anyway, with the interview over, we chatted about MS and she asked me about the symptoms I had experienced along with other probing questions. After all that, and without access to any of my records or test results, I could not expect her to make a diagnosis. However, she said from what I had told her, she believed I had PPMS (primary progressive MS).

That being said, on Friday I asked the question. What type of MS do I have? My neurologist, who does have my health records, replied without hesitation. “You have primary progressive,” she said.

So, it was a day when I finally found out my true diagnosis and was offered treatment for the first time. If not strange, it was certainly an extraordinary day.

50shadesofsun.com is the personal website of Ian Franks. 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. More recently, he was a freelance medical writer and editor for various health information sites. 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.

Paul pays tribute to dedication of staff as he prepares to leave Moscow HSCT centre

Although I have taken a break from writing during August, I just had to catch up with Paul Morrison who, earlier this month, travelled to Moscow to undergo HSCT for multiple sclerosis. The exact type of the disease is a matter of opinion, his neurologist says Paul has SPMS, but tests in Moscow indicate a diagnosis of RRMS. I know who I’d believe.

He is now approaching the end of his treatment and is set to return home next Tuesday, September 4.

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Paul in Moscow during the early stages of HSCT.

In the last three weeks, he has had his stem cells collected and stored, had chemotherapy to suppress his immune system, had his stem cells returned, and spent some days in isolation.

Of course, there’s more to it than that, they are just the high points. One vital part is the battery of tests carried out before the therapy can begin. And, in Paul’s case, thereby hangs a tale.

Paul explains: “They found 27 more brain lesions than my neurologist (at home), and a lesion blocking over 50% of my spinal cord.

“I have had a separate appointment with neurologist while in Moscow. And he said I am lucky that the nerve endings are not dead. This means I will have a  very good chance of regaining my walking function.”

Tribute to dedication

That such a discovery, was made in Moscow is a great tribute to the professionalism and dedication of Dr Dennis Fedorenko and all his team.

And that’s a view shared by Paul. Summing up his time in Moscow, he said: “From the cleaners who keep our rooms spotless and our spirits high, the nurses who take the extra time to make all the procedures so painless, to the doctors who have more dedication than I have ever experienced. Not to forget Anastasia Panchenko. And to have a protocol that is absolutely amazing.”

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Claire Morrison.

Claire stayed at home with their three children and is looking to the future with hopeful anticipation. She said: “it has been a long hard road but we can finally start to see light at the end of the tunnel. It would not have been possible without the generous donations from family, friends, and strangers. Their kindness has overwhelmed us.

“Charlotte, Ben, and Alvaro are so excited to see their dad, and I am looking forward to Paul’s recovery, waving goodbye to the drugs and, most importantly, halting this dreadful disease.

“Fingers crossed, bye-bye MS. We are all feeling hopeful.”

Although not wanting to be a wet blanket, I felt the need to say a few words. I told Claire: “Recovery is like a roller coaster ride, Expect ups and downs. Don’t get dispirited.”

Claire replied: “Paul is in high spirits, so can’t wait for the next chapter. I will try to keep my spirits up during the recovery down times.”

Lisa and I will be meeting up with Claire and Paul once he gets back to Spain and is well enough to receive visitors. Watch this space!

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Affiliate disclaimer: This affiliate disclosure details the affiliate relationships of MS, Health & Disability at 50shadesofsun.com with other companies and products. Read more.

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50shadesofsun.com is the personal website of Ian Franks, a freelance medical writer and editor for various health information sites. He enjoyed a successful career as a journalist, from reporter to editor in the print media. He gained a Journalist of the Year award in his native UK. Ian received a diagnosis of MS in 2002 and now lives in the south of Spain. He uses a wheelchair and advocates on mobility and accessibility issues.

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Note: Health-related information available on 50shadesofsun website is for your general knowledge only. It is not a substitute for medical advice or treatment for specific medical conditions. I am not a doctor, so cannot and do not give you medical advice. You should seek prompt medical care for any specific health issues. Also, consult a doctor before starting a new diet or exercise programme. Any opinions expressed are purely my own unless otherwise stated.

#paulsfighttowalk : Support sought for HSCT in Moscow

Former Londoner Paul Morrison is seeking support to travel to Moscow to receive hematopoietic stem cell transplantation (HSCT) in August.

These days Paul (46) and his family live a stone’s throw from my home in southern Spain. He shares my challenge of living with multiple sclerosis.

His dad, Phil, has set up a GoFundMe account, using the tag #paulsfighttowalk, with a target of raising £40,000 ($55,000). In just 19 days, more than £15,000 has been donated.

Phil said: “Paul has been tested positive for a virus that means he cannot receive second-stage medical treatment. Therefore, HSCT is his last chance. All the funds raised will be spent on Paul’s treatment.

The Spanish town of Vera’s Lions Club has got behind the appeal. Besides collecting money in local stores, it has named Paul’s cause as one of the recipients of cash raised at the large LionAid Party in the Park held on Sunday, April 15. According to the event’s Facebook page, it raised 5287.65€ (£4.630; $6,450).

Paul’s wife, Claire, said: “My husband Paul, dad to Charlotte, Ben and Alvaro, was diagnosed with MS last April.

“It’s a horrific disease and unfortunately Paul’s condition has progressed at a rapid rate. He now walks with crutches and his balance is kaput. My heart goes in my mouth every time he stands up.

“His speech has deteriorated and more frequently can’t get his words out and struggles to keep up with conversations. His memory has gone. PIN numbers and appointments, forget it.

“Spatial awareness has gone so simple tasks like cooking are a challenge. Some days are worse than others and these symptoms are just the tip of the iceberg. For a man who worked six days a week, in a physical job, this is life crushing.

One heartbreaking moment after another

“The impact on our family is immense. From a stay-at-home mum, I now work full-time to keep the family afloat. Paul was our fixer, our tell-us-what-to-doer, our money earner, our organiser, our crutch.

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Paul and Claire Morrison,

“Now we have one heartbreaking moment after another and the final blow was when he realised he couldn’t even walk our little boy to the park.”

Having tried disease modifying therapies (DMTs) and experienced sid effects that Claire described as “horrific”, they are turning to HSCT

Claire said: “After intensive research, and the results of an international study recently published, it has been shown as the most effective way of treating MS. It can halt this disease and in many cases reverses disability.

“The treatment has been available to a small number of sufferers in London and Sheffield and it will soon be recognised as an established treatment in the UK but we cannot wait.

“Paul is progressing at a rapid rate and he will soon be in a wheelchair. This has forced us and many other MS sufferers to go abroad as time is of the essence. We have spoken to neurologists’ far and wide and this is our best and only chance to halt the disease.”

Dr Denis Fedorenko.

Paul applied to the Moscow clinic headed by Dr Denis Fedorenko, one of the world’s leading HSCT centres, and was accepted.

That good news came at a price, though.

“We need you to stand with us and #paulsfighttowalk. Help us raise £40,000,” said Claire.

Having visited the Moscow HSCT centre 18 months ago, I can confirm the facilities are fantastic, the staff are brilliant, and Dr Fedorenko´s team has a tremendous record. Paul will be in the best of hands.

If you’d like to help Paul on his way, you can do so here,

#paulsfighttowalk

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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.

* * * * *

50shadesofsun.com is the personal website of Ian Franks, a freelance medical writer and editor for various health information sites. He enjoyed a successful career as a journalist, from reporter to editor in the print media. He gained a Journalist of the Year award in his native UK. Ian received a diagnosis of MS in 2002 and now lives in the south of Spain. He uses a wheelchair and advocates on mobility and accessibility issues.

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Note: Health-related information available on 50shadesofsun website is for your general knowledge only. It 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. Also, consult a doctor before starting a new diet or exercise programme. Any opinions expressed are purely my own unless otherwise stated.

Russian Physician’s Guide to HSCT in Moscow

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There’s good news for anyone with multiple sclerosis who is considering undergoing HSCT, especially if that involves being treated in Russia.

And that’s because Denis Fedorenko, MD, who is in charge of the stem cell transplant program for MS patients, has put together a comprehensive guide to the whole procedure at the A.A. Maximov Department of Hematology and Cellular Therapy of the Pirogov National Medical Surgical Center, in Moscow.

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Dr. Denis Fedorenko.

Autologous Hematopoietic Stem Cell Transplantation (AHSCT) for Autoimmune Diseases (AID) includes explanation of the general procedure, as well as detailed explanations of individual parts of the process. It also has a section devoted to the experienRussian Physician’s Guide to HSCT in Moscowce of the Russian team.

Other sections detail such topics as the Inclusion Criteria, Exclusion Criteria, Pre-Transplant Examination, and steps of the AHSCT treatment.

Here is one excerpt – the Inclusion Criteria:

Systemic autoimmune diseases

o Diagnosed multiple sclerosis (all variants) with EDSS score between 1.5 and 6.5, documented progression/relapses over the previous year, with or without gadolinium-enhancing lesions.

o Chronic Inflammatory Demyelinating Polyneuropathy (CIDP) with or without paraprotein

o Severe systemic vasculitis

o Systemic lupus erythematosus

o Systemic sclerosis

o Crohn’s disease

o Other severe systemic autoimmune conditions, including  connective tissue diseases

Age 16 – 70

Adequate organ function 

o Cardiac LV Ejection Fraction >45% o Total Lung capacity > 60%

o Pulmonary artery pressure < 45 mmHg

o DLCO/VA>50%

• Absence of severe chronic infections

• Negative serology HBV, HCV, HIV

• Absence of mental and cognitive deficits and ability to provide informed consent

• Absence of gross cognitive disturbances 

• Absence of severe concomitant diseases

Three months ago, I visited the Maximov HSCT clinic to undergo tests to see if I could have the treatment. I saw the facilities and met and talked with Dr. Fedorenko, administrator Anastnasia Panchenko, other members of the team as well as patients.

My tests turned out to mean that HSCT was not suitable for me because of another health condition, But I have no hesitation in saying that, had it been possible, it is the treatment I would have chosen.

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.

Phoebe’s HSCT Story: Back home (Last in a Series)

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Phoebe Scopes was the first international patient to receive Hematopoietic Stem Cell Transplantation (HSCT) therapy for multiple sclerosis in Moscow. In this fourth, and last, part of her story, we join Phoebe on her return home to the London.

Ian: What is your post-HSCT MS state from getting home until today?

Phoebe: Back home, four months post treatment, I shared video footage with my “newly appointed”  neurologist and hematologist. The video showed me the day before discharge from the hospital walking quite freely for three-four meters without the need for any kind of assistance.

By now, though, I was experiencing the latent effects of chemotherapy and was leaning heavily on two canes, so I didn’t resemble the footage at all.

I did, however, retain the improved cognitive position I showed in the hospital after treatment, but felt that I was slowly losing the physical gains realized after HSCT.

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The roller coaster ride of treatment then recovery after HSCT, created and drawn by Phoebe Scopes.

For a while, I moved through different levels of wellness, sometimes feeling strong and upbeat while other times experiencing total body weakness, and a return of old symptoms often worse than they were before. I went into early menopause and my hormones were all over the place, which brought on bouts of depression. I coined this stage as the “rollercoaster” ride, and like many HSCT patients I believed that the real improvements would come once the effects of chemo had diminished.

We are told that the rollercoaster ride can last up to two years after treatment, so many have bided their time only to find that two and three years later they seem to still be waiting for significant benefits while their disease remains worse than it was before HSCT.

In some ways, I felt that my MS was continuing to progress, despite gaining some cognitive improvements early on.

I was definitely what’s known as a “responder” to HSCT, but with the return of some difficulties relating to mobility, I believed I was one of the 25% who needed further disease ablation — what I called “top-up” treatment. Top-ups are courses of chemotherapy divided and spread out over anything up to six months for the purpose of destroying those pre-HSCT rogue cells that still remain after HSCT, and are responsible for low-level immune inflammation.

After receiving top-ups, I experienced marginal improvements to my mobility again. But, as before, the benefits gradually disappeared. After this, my new neurologist advised me that more chemo could create other health complications. I definitely agreed with him so, declined another course.

It’s at this stage that I made a difficult, but liberating, decision to stop destroying my now fragile immune system with more chemotherapy, steroids and other pharmaceuticals, and start the long but achievable journey of healing my body using a natural approach.

HSCT is not for everyone, but I believe it is important that it is understood and clearly made available to patients much earlier in their disease, preferably before there is disability. This does not guarantee treatment success but it provides a stronger probability.

Ian: It’s good to hear you commenting so favorably about HSCT, but in your own case do you feel it was worthwhile having HSCT, or do you now regret having it?

Phoebe: I rarely get asked this question by family and friends, but it often comes up within the HSCT circle where either someone exploring treatment raises the topic, or one HSCTer asks the other whether they have regrets.

Most people who receive treatment have had to raise funds and take their family and friends on an emotional journey of hope for a cure. They understandably feel guilty if they are to admit the failure of treatment and a sense of disappointment can overshadow everything at this stage.

Personally, I neither regret having HSCT, nor hail it as a “miracle cure” treatment.

Yes, there are HSCTers with incredible stories about how their lives have been transformed because of treatment; people like Carmel Turner, who got out of her wheelchair and walked AND is still walking and working in a job she loves, but couldn’t do before.

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

There are others with less dramatic, yet very encouraging, stories. But I can’t ignore those for whom treatment results have been disappointing and, like me, have struggled with the side effects of the HSCT regimen.

I am glad I was in a position to use HSCT and I definitely experienced significant improvements after treatment, even though some of these were short-lived. The biggest improvement that has stayed with me is the one that restored my cognitive abilities to allow me to construct things such as this story. However, I do sometimes feel that maybe my cognitive state would have recovered on its own after the relapse I was having at the time.

So, for me, there is no clear winning side.

Ian: Phoebe, is there anything else you´d like to say?

Phoebe: Yes, thank you. As an avid researcher, my motto has always been “Knowledge is King.”

It is understandable that when faced with an opportunity to halt a disease like MS, we invest the majority of our time assessing its efficacy and safety. Of course, these two areas are the backbone of any treatment.

There have long been discussions and speculation that HSCT can cause cancer, but there is no strong evidence to support this. Yes, I have heard about a few people being diagnosed with cancer after their HSCT ,but cancer does not just develop overnight, so chances are it was already there before treatment was started. Having said this, I do recognize that maybe HSCT can accelerate the pace of existing cancers, so I feel it is right that there is always a healthy level of awareness.

I also think we need to know more about the long-term side effects of some of the drugs used in treatment. For example; Cyclophosphamide (chemotherapy drug) and Prednisone (steroid) are both known to cause peripheral nerve damage, which may be temporary, but can be permanent. If we are trying to improve our disease, does it make sense to use drugs that have the potential to damage us further?

It is also worth knowing that some of the side effects from chemo-related treatments like HSCT do take time before presenting themselves.

A number of people who received HSCT two or more years ago for example have reported being diagnosed with AVN (Avascular Necrosis). AVN is a painful destructive disease of the bone that brings with it the need to replace hips, knees and other joints, and is most often the result of using Prednisone and/or steroids.

It is my opinion that these side effects do not affect everyone and I don’t believe that this information would deter many people from receiving HSCT. But it would be good for us all to know before using these drugs whether they are being used to “manage” disease, and certainly if one is considering HSCT.

It’s well worth investigating and asking ourselves the question about the risk-to-reward ratio.

Ian: Finally, please tell us how you are, and what you are doing to look after your health today.

Phoebe: Today and for over the last six months, I have been following an all-natural protocol scientifically researched and used to treat MS and other autoimmune diseases with success.

The research and studies were carried out by the late Fredric Klenner, MD, and involve using high doses of vitamins and minerals in a completely orthomolecular practice.

Contrary to what we are told about MS being irreversible, Dr. Klenner proved that myelin can and does certainly repair when given the right ingredients in which to do so. It is a long process but can be achieved.

I wasn’t expecting much to happen for a while, but since starting the protocol, I have already experienced great improvements to many areas of my MS that were not there prior.

I am so grateful to have found this protocol so I’ve set up a Facebook page to provide information and support to anyone wishing to use alternative therapy.

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.

In Moscow for HSCT: Part 3 of Phoebe’s Story

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Two weeks ago, I introduced you to Phoebe Scopes, the British woman who was the first international multiple sclerosis patient to receive hematopoietic stem cell transplantation (HSCT) in Moscow. Today, in part 3, Phoebe takes us with her to the A.A. Maximov Department of Hematology and Cellular Therapy, at the National Pirogov Medical Surgical Center in Moscow.
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Dr Fedorenko with Phoebe during her treatment. (Pic: Phoebe Scopes).

Ian: When did you go?

Phoebe: On Sept. 17, 2012, my husband and I stood in arrivals at Moscow airport with two suitcases and a piece of paper with the address of Maximov hospital. As the first international patient to be assessed and treated, Dr. Fedorenko (Denis Fedorenko, MD) was waiting to meet us.

We made our way out to the airport car park where a group of taxi drivers stood waiting for their next job. Now about 6 p.m. on a September evening in Moscow, it was cold and the light was disappearing fast. I was extremely weak and felt completely vulnerable so, I was very grateful that my husband had his wits about him as he negotiated the fare and we got into the car.

The hour-long journey from the airport to the hospital felt like a white-knuckle ride. With his seat in an oddly semi-reclined position the driver used the roads as though he was going around a speed track and by the time we got to the crowded motorway, the driver along with other motorists, hopped on and off the hard shoulder to avoid queues.

I decided to pull the large hood of my top over my entire head before closing my eyes and minutes later, I was laughing nervously under my breath as I remembered the words of my neurologist. He was almost certain that HSCT would kill me, but treatment was now really looking like the better option here.

It was late evening by the time we arrived at Maximov hospital. This was a big hospital with a number of entrance gates around it that were now locked.

Remember that the driver did not speak English and neither of us could speak enough Russian to have a conversation, but he got out at one of the gates and pressed an intercom to speak to somebody, anybody on the other end. Getting back into the car, the driver made his way to one of the smaller wings of the hospital where the doctor and his then temporary assistant greeted us.

Ian: What was the quality of treatment and care received?

Phoebe: As mentioned earlier, the hospital was just at the beginning of their experience with international patients, so there were still some areas that were not yet confirmed, such as accommodation for carers. Dr. Fedorenko was not happy to leave my husband to check in to any one of the random hotels nearby, so invited him to stay in my room for the initial assessment period and if results were favorable for treatment, the doctor assured my husband that I would be well looked after if he needed to return to the U.K. during my isolation period of HSCT.

I grew more and more impressed with the quality of medical attention I received from the doctor and his dedicated team once on my own. The doctor spoke good English, but his staff did not speak any, yet we all found ways of communicating.

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Valuable symptom translation document for nurse and patient understanding. (Pic: Phoebe Scopes).

Before the main treatment started, the doctor suggested that he’d create a sheet. On the sheet, he would list (in English) symptoms that often occurred during chemo and next to each symptom, the Russian translation in the next column.

Dr. Fedorenko worked tirelessly and wanted to make sure that in his absence, the nurses would know what was happening, how I was feeling, and whether they needed to call him. Nothing was too much trouble for the doctor and this put me completely at ease.Before the main treatment started, the doctor suggested that he’d create a sheet. On the sheet, he would list (in English) symptoms that often occurred during chemo and next to each symptom, the Russian translation in the next column.

I didn’t know what to expect being on my own where no one else spoke English. I thought I would be very bored during treatment … sick and bored because reading books or magazines triggered headaches and fatigue and my dexterity was labored, making writing difficult. So, I decided to use my laptop to keep an account of my HSCT experience in isolation, in Moscow.

With my design background, I combined illustrations with daily entries, which kept me as busy as I needed to be and provided good distraction when things were tough. I called this “my diary in isolation.”

I soon got to know all the staff; the cleaners that left NO surface unattended and nurses working on the ward and I watched as they maintained the highest levels of care and dedication required when looking after seriously sick patients. I will never forget their kindness.

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Phoebe with catheter inserted, ready for stem cell collection. (Pic. Phoebe Scopes).

In the days after receiving my last round of chemo, I was given back a whopping 10 million stem cells that were collected and harvested before the matter of ablating my old immune system was initiated.

A day later, the first thing I noticed was that my head “fog” and fatigue had lifted to leave behind a great deal of clarity and energy. My cognitive abilities also fully returned, allowing me to add simple numbers again, work out general problems in my head and multitask without the need to find a dark room or sleep afterward.In the days after receiving my last round of chemo, I was given back a whopping 10 million stem cells that were collected and harvested before the matter of ablating my old immune system was initiated.

My vision was clearer, my balance was better and my limbs felt lighter. As a result of these physical improvements, I walked a few meters unaided.

Before I was finally discharged, I felt surprisingly energetic and remember thinking that this was not how someone that had just received chemotherapy should be feeling. The doctor, seeing my new-found energy, carefully reminded me that the cocktail of drugs such as antibiotics, steroids and pain killers taken during treatment, were still to an extent supporting me.

He advised me that once some of these drugs were reduced or removed completely, I would likely experience a turbulent period of extreme symptoms that would continue while I built a new immune system.

Dr. Fedorenko with Phoebe as she prepares to fly home. (Pic: Phoebe Scopes).

Dr. Fedorenko with Phoebe as she prepares to fly home. (Pic: Phoebe Scopes).

The day that my husband and I left the hospital to return home, Dr. Fedorenko waved us off as the taxi drove away. I remember how he stood watching the car until we were out of sight. I know that he was already worrying about how I would manage the flight home. I was wrapped up from head to toe for the journey and wore a surgical mask, and while I was looking forward to going home, I was strangely already missing my isolation room that had been my secure home for six weeks.

In part 4, we join Phoebe on her return home.

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.

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.