Diagnosis – Another MS Warrior

57 Ask me a question …some answers

When did you know you have MS?

I was diagnosed with MS in June 2017. My most recent MRI scan around that time showed no new lesions or inflammation so my MS was described as “benign”.

I had a further MRI in November 2017 and then in May 2018. These both showed current inflammation and “enhancing lesions”. I had also developed several new symptoms. My MS was then redefined as Active RRMS.

RRMS = Relapsing Remitting MS.

At my most recent neurology appointment, I asked the consultant if he thought my MS was becoming progressive. He replied “well, you’re certainly on the way ”. Somewhere between 50 and 90% of the those with RRMS will become SPMS (Secondary Progressive MS).

Prior to my diagnosis in June 2017, I had had concerning symptoms on and off for about 7 years. In 2014 I was diagnosed with Clinically Isolated Syndrome and Transverse Myelitis.

There are various episodes and symptoms I can recall in the past, that I now recognise may have been neurological symptoms. It is possible that I have had MS for many years.

Is HSCT safe?

No treatment is 100% safe. Having said that, the safety record for HSCT is excellent and improving all the time. Interestingly, the two main clinics used by UK patient (in Mexico and in Russia) both have a far better safety record than the UK. I guess this is due to their experience and careful selection and testing of patients before treatment.

The most risky phase of HSCT is the period of time during which the patient’s immune system is virtually wiped out and before the stem cells have had a chance to begin rebuilding it. This is known as neutropenia. During this stage (about 7-10 days) patients remain in isolation with very strict protocols linked to hygiene, food etc. Patients are continually monitored by medical staff so that action can be taken at an early stage if any concerning symptoms arise. At this stage, an infection that would usually be of no concern, or easily fought off by the body, can lead to sepsis. Thankfully, this is very rare.

Why isn’t it available in the UK?

HSCT is available in the UK and is used widely all over the country to treat patients with Leukaemia and other blood / bone marrow cancers. Two hospitals in London have been treating MS patients for the last few years but as this is a very limited resource, there are very strict criteria in place in order to select patients. A handful of MS patienst have also been treated in Liverpool and Manchester and possibly other hospitals too (this information is not reported anywhere). Some MS patients have received HSCT in Sheffield as part of the MIST trial.

At present I don’t meet the criteria for HSCT on the NHS as I haven’t tried several DMDs. I don’t want to do this as it would take several years, my MS could progress, the drugs have serious long term side effects and there is some evidence that HSCT may be more effective for those who haven’t had multiple previous treatments affecting the immune system.

HSCT is a available privately in the UK, but the costs are much greater than the private clinics abroad.

Why Russia?

I have done a lot of research into the clinics where HSCT is available to international patients. There are several where the costs are beyond my reach and a few who will only treat residents of that particular country. In the end, the choice came down to either Russia or Mexico. Both have treated hundreds of MS patients, including many from the UK, both have an excellent record in terms of outcomes and patient safety and both have an excellent reputation in terms of patient care. In the end, I chose Russia because it is slightly cheaper, it is much nearer and there are some additional costs involved in going to Mexico (patients must bring their own carer or pay extra for this care).

At first I felt a bit anxious about this. Who has ever heard of anyone going to Russia for medical treatment?! But I have been reading and researching, following the journeys of others and even communicating with others whilst they are at the clinic having treatment! I feel confident in the decision I have made.

Will you lose your hair if you have HSCT?

Yes! Well, most people lose their hair due to the chemotherapy phase of the treatment. Obviously that’s not something I’m looking forward to, but if it halts my MS then it’s worth it. Perhaps I’ll wear a wig or maybe a series of snazzy hats! I’m sure I’ll cope.

Actually, I’m more worried about having no eyebrows …I think I’ll research microblading before I go!

I’d like to help but I’m skint!

I totally get this. We are all experiencing hard times at the moment and I know that money is tight for a lot of people. I would never want anyone to feel pressurised to donate …please only give what you can afford. If you can’t afford to give anything, that’s fine too.

There are a couple of other ways you can help…

Share this blog and our fundraising page with all your friends and encourage them to do the same.

If you or anyone you know is in a position to donate items that can be raffled or auctioned, these would be very gratefully received …unwanted Christmas gifts, tickets for events, meals, massages, haircuts etc etc

Thank you all so much for your continued support and kind words. It really means a lot ?

39 Well known people with MS

Some of you may be aware that Hollywood actress, Selma Blair, has this week revealed that she was diagnosed with Multiple Sclerosis in August of this year. Although no one would wish MS on anyone, her open and honest Instagram post on the subject was well received by the MS community.

It’s a bit depressing to see that one of our trashy news papers is now carrying a grainy video of Selma limping and holding on to her partner when out shopping (MSers are not exhibits in a zoo!)

When I heard the news about Selma, it got me thinking about other people in the public eye who have MS and realised that I really couldn’t think of anyone! I’m not sure if this means that there are well known people with MS, who are largely successful at keeping their illness hidden; or whether developing MS causes famous people to drop out of the public eye?!

I decided to do some online research and discovered the following are also diagnosed with MS.

Jack Osborne

Jack is perhaps the most well known MSer. He revealed his diagnosis in 2012 and talks about his life with MS via his website youdontknowjackaboutms.com. There has been a bit of criticism about his approach, as the lifestyle he advocates is only accessible to those with access to funds and who don’t have to work. Jack also admits to being paid by one of the big pharmaceutical companies making a lot of money providing drug treatments for MS.

Richard Pryor (comedian and actor)

I had no idea he had MS. Apparently his declining mobility affected the roles he was able to choose as his disease progressed.

Walter Williams (singer with the O’Jays)

Alan and David Osmond (Father and son in the famous singing family)

“I may have MS, but MS does not have me,” is Alan’s MS motto. I’m sure he was devastated when his son was diagnosed 20 years after his own diagnosis. Both now regularly speak on behalf of the National MS Society (USA).

Jamie-Lynn Sigler (Actress best known for her role in the Sopranos)

Jamie-Lynn announced her MS diagnosis in 2016 and has talked about how it affects her daily life … “When I walk I have to think about every single step, which is annoying and frustrating.” (I can relate to this!)

Clive Burr (drummer with Iron Maiden)

Ronnie Lane (the Small Faces, the Faces)

Don Van Vliet (known as Captain Beefheart)

Sadly I also found listed, numerous athletes, football players, hockey and baseball players whose careers were cut short by a diagnosis of MS.

On another sad note I found that, in the past MSers often died much earlier than they should have (many of them in their 50s). Thankfully, more is known about the disease and how best to manage it and life expectancy is now just a little below that of the general population.

Despite a lot of digging around online, I found very few well known people in the UK with MS. I find it very hard to believe there aren’t more – please let me know if you are aware of anyone

There are a few noteable names who are active in the MS world due to having a loved one with the disease.

JK Rowling

Joanne’s mother had MS and in fact, died from complications linked to MS at the age of 45. She has spoken openly about how difficult it was to see her mother’s decline and death at such a young age. JK has donated a significant amount of money to MS related causes, including giving £10 million to found a clinic, which is named after her mother.

Scott Mills (BBC Radio DJ and Broadcaster)

Scott has often spoken in interviews about his mother’s diagnosis and is proactive is seeking to help people understand what living with MS means. He has also been an active spokesperson for the MS Society.

Felix and Hugo White (The Maccabees)

Both have often spoken about their mother’s diagnosis and how this affected their family. The Maccabees have also raised funds for MS charities at their gigs and have taken time to meet with young fans living with MS.

I found a few other names listed but didn’t know of many of them. I’m sure there are others.

12 Living in a small world

I’m trying very hard to stay upbeat, positive and optimistic through my diagnosis and search for the best treatment, but it hasn’t always been that way and to be honest, there’s the odd time when I still can’t manage it.

When I was first diagnosed (June 2017) I was in denial, kind of pretending it wasn’t happening, not really telling anyone and hiding my symptoms wherever possible. It took me a whole year to get my head around it, to accept it and to decide the best idea is to learn as much as I can and do whatever I can to fight back.

I have spent many years of my adult life as a single parent, putting all my energies into raising my children, giving them the best that I could. I gave up my teaching job for a few years when I realised working 60 hours a week wasn’t compatible with lone parenting. I prioritised my children, kept men at arms length and generally put other aspects of my life on hold. Don’t get me wrong – these were happy times and I didn’t feel I was making a huge sacrifice. I knew that this was just a stage in life and that before long my children would be grown up and independent and I’d have plenty of time to do things for myself. I thought maybe I’d travel, join a dating site, rent out my house and work abroad, do a photography course, get fit …

Unfortunately 7 years of strange symptoms and worrying MRIs have cramped my style a little! It’s hard to plan ahead and impossible to commit to anything too challenging when you’re not sure whether your body will be functioning properly.

In August 2016, I was having a really well phase and went on my first ever singles holiday. I had an amazing time. Unfortunately, shortly after my return home, I began my third and most severe MS relapse and haven’t had a symptom free day since then.

At the top of Nea Kameni volcano, Santorini (Aug 2016]

One of my biggest disappointments is a few years ago having to defer, then withdraw, from a Psychology of Education Masters course I had been offered a place on, when my health problems got in the way. I hope I get another chance some day.

Sometimes I am all too aware that I’m neglecting friends as my time, emotions and energy are limited and need to be rationed!

So, in many ways, my world has become smaller over recent years, rather than the expansion I was hoping for.

1 How did I get here?

My journey to diagnosis is a slightly unusual one. Most of those with MS are diagnosed in their twenties or thirties, so I don’t fit the most common profile. I am also informed (by my neurologist) that my MS presentation is unusual. Because of this, my early symptoms were attributed to my age, the menopause or my existing thyroid condition and it took 7 years to reach a diagnosis. One GP even suggested my symptoms were “all in your head”! During that time, I had several brain and spine MRI scans and eventually a lumbar puncture. To date I have 3 large spinal cord lesions and numerous white spots in my brain and my recent brain MRI scan showed ongoing disease activity. My neurologist has gone from “don’t worry, go and get on with your life, you may not have any further relapses” to “I think you’ll have another relapse and I think it will be soon”. All a bit scary! But it’s not all bad news … One of the positives about being diagnosed with a life changing illness is that it forces you to reevaluate your life and to work out what is important and what isn’t. Some of the minor day to day niggles of life now seem irrelevant. I am blessed with my wonderful children, fantastic family, fabulous friends, amazing work colleagues and a job I love. I know I am lucky.