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

orange

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.

strap-new

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.

Familial Connections Cannot Be Coincidences, Can They?

Life can be really strange and not always fathomable to someone like me who is not blessed with neither medical nor scientific qualifications.

familial connectionsOn a purely technical basis, I am just an ordinary guy. What I do know about diseases, illnesses and conditions – call them what you will – comes from my personal experience of being a patient, being a relative of a patient, or through being a journalist. In the last role, I carry research into facts to enable me to write and to talk to people who know much more than me about their subjects.

All this is the foundation on which my opinions are developed.

But let’s look at something that many may regard as mysterious: possible connections between diseases and family members!

Can multiple sclerosis be inherited? While in most cases the answer seems to be that it is not inherited, research published earlier his year proved that in some cases it can be. Familial links have been discovered. (http://news.ubc.ca/2016/06/01/ubc-vancouver-coastal-health-scientists-find-genetic-cause-of-multiple-sclerosis/)

Two different connections

In my own case, I have two family links with two different illnesses – epilepsy and MS. The fact that I have both is not totally surprising as it has been established that epilepsy and multiple sclerosis occur together more frequently than by chance. (https://www.ncbi.nlm.nih.gov/pubmed/24304488).

My brother and I developed epilepsy, although there was no known family history of it. I can remember as  a child, probably about 6 years old as I was 11 years younger than my brother, seeing him have a seizure in our garage. I ran into our backyard calling to our parents and shouting that Graham had “fallen over.” I knew what I meant – and so did they!

Later, a couple of his children showed signs of the disease while still young but they seemed to grow out of it.

However, a different son has since been diagnosed with relapsing MS and was told a couple of days ago that his recent MRI shows active lesions. My nephew has now been prescribed Tecfidera that he is going to take, despite having very real concerns about its possible side effects.

“I checked the drug out on the MS Society website,” he told me. What he saw did not exactly ease his concerns.

Connections or coincidences? I don’t really believe in coincidences.

This post, written by me first appeared in Multiple Sclerosis News Today.

new strap

ian profile

Ian Franks is Managing Editor of the columns division of BioNews Services, owner of 50 disease-specific news and information websites, including MS News Today. He 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 and uses his skills to write his own flourishing specialist MS, Health & Disability blog at 50shadesofsun.com. 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.