Where to begin?

Well here I am writing my first ever blog post.  At this point I have no idea who will even read it!  But here goes …

I was diagnosed with Multiple Sclerosis in June 2017 and although I have talked to family, close friends and colleagues, I have been fairly private about it with everyone else …until now.  Recently I have been more open with people and have received supportive words from everyone.  I am not ashamed or embarrassed to have MS, it’s not a secret and I feel better being open about it.

One of the reasons for writing this blog is to record my thoughts, progress and symptoms as I seek to manage my condition.  I hope in the process of doing this, it will help me to come to terms with the changes this has brought to my life.  I’m hoping it will also be a good way to keep family and friends up to date as I explore possible treatment options.

If you have any questions, comments or blogging advice, please add a comment or contact me in the usual way.

I am determined to live the best life I can and to do all I can to fight MS.

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31st January 2019

Its’s been almost 6 months since I wrote this first post. A lot has changed since then , so I though I’d add an update to explain …

Since August, my MS has continued to progress with no major relapses. I now use a walking stick daily and have been issued with a Blue Badge and work place parking permit. I have also reduced my hours at work in order to cope with my ever increasing fatigue.

My neurologist has left the country! He has returned to his home country of Malta and I have been allocated a new one. He has offered me Copaxone but I have declined.

I have decided that I want to go for the most effective treatment for MS currently available …HSCT (Haematopoietic Stem Cell Transplant). Unfortunately this isn’t widely available in the UK and I don’t quite meet the very tight criteria for treatment on the NHS. This could possibly change in the next few years but I don’t think I can wait that long.

After much research and discussion with my family, I have decided to go abroad for treatment. I am booked to go to a clinic in Moscow on 23rd April. The clinic is experienced in treating MS patients and has an excellent record in terms of successful outcomes and patient safety.

The cost of the treatment, flights and visas is around £40K. We are working hard to raise the funds and will borrow if we have to so that I can make that date in April.

There are lots of posts in this blog which explain this in more detail, so feel free to browse and search.

Thanks again for reading ?

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16th September 2019

Today, 16th September 2019, is exactly one year since we launched our fundraising campaign, asking family, friends and strangers to help raise a massive £40K to fund HSCT for me in Moscow.  I know I have many new readers since then, so thought now was a good time to write a bit of a summary of the story so far and also to reflect on how far we have come.  

I was diagnosed with Relapsing Remitting Multiple Sclerosis in 2017, after at least 5 years of worrying symptoms and concerning finds on MRI scans.  I also have Hashimoto’s Disease, autoimmune thyroid disease, which was diagnosed in 2006. 

The progression and accumulation of disability of my MS has been rapid.  At the time of diagnosis, my EDSS score was around 1.5 and by December 2018, my neurologist assessed me as 6 (I think I am nearer 5 or 5.5).  I have other long term problems and don’t want to get any worse.  

In May 2018, I saw a BBC news report about HSCT (Haematopoietic Stem Cell Transplant) being successfully used to treat MS and halt its progression (HSCT does not cure MS or undo previous damage to the brain and spinal cord).  Since then, I have been reading, researching and talking to others in order to learn everything I can about HSCT and find out whether could be a viable option for me.  

Click here …

Stem cell transplant “game changer” for MS patients – BBC News 18.03.18 

By the Summer of 2018, I had come to the conclusion that it could and began looking seriously at how to access the treatment.  I was aware that some MS patients have been successfully treated in the UK, but that the criteria for inclusion were very specific.  I also knew that I did not meet the criteria, so began researching options abroad.

To cut a long story short, I identified a clinic in Moscow, the AA Maximov Department of Hematology and Cellular Therapy, as my best option.  Well over 1000 international MS patients have been treated here, with several hundred from the UK. 

The cost is €45,000 and with the exchange rate at that time and the additional cost of flights and visas, we worked out that we would need £40K to get me to Moscow for the treatment I need.

We launched our Go Fund Me page on 16th September 2018 and began organising events and taking part in challenges to raise money.  Thanks to the generosity of friends, family and kind strangers, we have raised …. £18,646

In the mean time, I also applied to the clinic in Moscow, sent them my full medical records and was accepted for treatment.  We had hoped that I could have HSCT in April 2018, with a plan to borrow the rest of the money needed and to continue to fund raise afterwards.  Then, a couple of months before this, I heard about a new HSCT trial planned to take place in the UK, being led by Professor Sharrack (neurologist) Professor Snowden (haematologist) and at Sheffield Hallamshire Hospital.  This is the team mentioned in the BBC link above. I contacted both directly and despite not meeting their published criteria, they agreed to see me.

I had my first appointment with them in June, followed by an MRI scan in July.  I was told I’d have a follow up appointment in August, but I’m still waiting.  They tell me I will be allocated an appointment on Monday (16th September) and will receive a letter soon after.  

The last few weeks have been very difficult for me.  I’m not good at being patient or at not knowing what’s coming next.  I also feel that all other aspects of my life are in limbo …I can’t plan anything!  I must admit this has really got me down.

Hopefully by the end of this week, I’ll have an appointment date and feel a bit calmer about it all!   I think once I have a date, I will be able to throw myself into other things until the date approaches.  

The decision on whether to treat me in Sheffield or not, all hinges on the outcome of my recent MRI scan …if there is current disease activity, then the answer could be YES.  If there is no current disease activity, then the answer will definitely be NO.  My last 3 scans (most recent in May 2018) all revealed current disease activity, which was upsetting and worrying at the time.  Now I’m in the strange position to be hoping for disease activity! 

I am still in touch with the clinic in Moscow and they are aware of my situation.  If I receive a NO from Sheffield, I will ask for the next available date in Moscow (likely to be early 2020).

Here’s a summary in numbers, of all we have achieved …

• Funds raised … £18,646
• Number of donors … 147
• Go Fund Me followers …145
• Blog posts … 99
• Blog subscribers … 22
• Blog views … 5,283
• Facebook followers … 107
• Instagram followers … 208
• Twitter followers … 262

Never in my wildest dreams did I think we could achieve this much, so thank you to everyone who has donated, helped with events, provided support, shared online and who have been there for me through this journey so far.

GoFundMe