Tag: Professor Sharrack

112 Happy Twixmas!

Hello everyone and happy twixmas!  What a strange time of year this is … it seems no one knows what date it is, what day it is or what time it is!  What shall I eat and when?  Shall I leave the house today or have another day snuggled up with the cat, watching rubbish on the telly?

The last few weeks have been filled with their usual ups and downs, so I’m really quite glad of this quiet time to think and reflect and to process everything that’s happened this year.

A couple of weeks ago, I received an unexpected phone call from Professor Sharrack’s secretary, asking me to come for an appointment just two days later.  The original date for my follow up appointment was in early February, so I was really pleased that it had been brought forward.  Niamh kindly arranged to take the morning off work so that she could come with me and also offered to drive me there, which was a big help.  So off we went across a rather foggy Snake Pass, ready for my appointment. 

I’m not going to go into great detail about the appointment here, but a summary would be to say that he didn’t say “no” but he also didn’t say “yes”!  

Things are all a bit uncertain and he is unsure whether I meet his criteria for treatment.  Amongst other things, he said I would likely meet the criteria for treatment by the London HSCT team and would therefore definitely meet the criteria for private treatment in London!  Unfortunately, I don’t have time to explore the London NHS option or the funds to consider the private route (£80K+), so neither of those are an option for me.

Prof S also thinks I have Progressive MS with Superimposed Relapses, rather than Relapsing Remitting MS …I’m not sure that I understand the significance of this, so more reading and research ahead for me!

Anyway, I am to have a further MRI scan in Sheffield in January, which Prof S will then compare with the last one (June 2019), before he makes a final decision. 

It was so good having Niamh with me to help with the practicalities of getting there, provide moral support and to discuss things with afterwards.  I’ve had so many medical appointments over the last few years and it was good to get the views of someone who is new to it all.

We were rather deflated on our journey home.  We had been sure we would have a final answer at last and be able to fully focus on either Sheffield or Moscow, rather than this weird limbo we have been in for too long.  Having reflected on this further, I feel that treatment in Sheffield is now outside my reach and I need to spend the next few weeks focussing on getting to Moscow.  I’m booked to go on 16th March, which is just 11 weeks away!!!

So, let’s get on with fundraising! 

At the start of December, we appealed for people to donate to the fund instead of buying Christmas presents and/or cards.  We were hoping to raise a few hundred pounds and to hit the £20K mark but your kindness and generosity has been astounding and this appeal has raised an amazing £1,430 …thank you so much to everyone who responded ???

Our grand total now stands at …

We are hoping to squeeze in a couple of fundraising events before March and to do this we will need your help.  Do you have any used bottle gift bags you would like to donate? These can be Christmas or any theme.  If so, please let one of us know.  

If you have any unwanted Christmas gifts we could sell or use as a prize, please also get in touch …we would be very grateful for anything you can give.  

Information on fundraisers to follow (and we are always open to new ideas and suggestions too!)

I hope you all had a wonderful happy Christmas and wish you all the best for 2020. Many thanks for all your ongoing support ?

GoFundMe

109 A quick update

This is just a quick post to touch base and to update you on a couple of things.  

I was going to write a post entitled “A day in the life of an MSer” but as I started writing it, I began to realise it was too bloomin miserable for public consumption! 

I’ve had a difficult couple of weeks, overwhelmed with MS symptoms and generally feeling rubbish. I didn’t manage to go to work at all last week but I’m hoping to get back to it on Monday. I think I’ll delay my “day in the life” post until I’m feeling more positive! 

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I don’t live in the same place that I grew up and I have friends and family all over the place.  I keep in touch with many by email, whatsapp, Facebook, Messenger etc and really love to hear from people.  Over the last few weeks, I’ve had lots of lovely messages from friends and family, many of which I haven’t managed reply to.  I’m sorry for being so rubbish at this.  I really do appreciate hearing from you, I’m not ignoring you, I haven’t forgotten you …I’m just struggling to deal with everything at the moment.

Something else I’m in danger of falling behind on is this blog, so this post is an attempt to address that. 

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In amongst the stressful last few weeks, I received some really good news …a letter from Professor Sharrack at Sheffield Hallamshire Hospital.  I have an appointment with him in February and he is hoping to bring this forward.  He has also asked me to bring a copy of my previous MRI scans (on a CD) so that he compare it with the scan I had in June.  It’s hard to say whether this is a hopeful step or not (I’m trying not to get my hopes up), but at least I’ll have a final answer on HSCT in the UK a little sooner previously thought.

In the meantime, we are still fundraising and aiming for my date in Russia in March. Our fundraising total now lies at …

It would be amazing to get to £20K before Christmas ????

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We are asking people to think about the Christmas cards they send and consider whether there is a different way to approach this …

Are you about to hurry out to buy Christmas cards that will eventually end up in the bin? Why not help us instead…

This year, instead of buying Christmas cards or receiving a Secret Santa present, please consider donating the money you would usually spend to our fundraiser?

Not only would this help us to get a little bit closer to our target, but it would also help to save our planet and hopefully relieve some Christmas stress!

It is estimated that around 900 million Christmas cards are sent each year in the UK. When you factor in postage costs, that’s a lot of money on something that will be forgotten about in just a few weeks time.   Why not send an e-card, text, WhatsApp or Facebook message to wish your loved ones a happy Christmas …real life hugs and good wishes are even better! ❤️

Thank you so much for anything you are able to donate.  Please share this idea with your family and friends and anyone you know who would like to find a way to help others at Christmas time ??❤️

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Our next fundraising event is the Vintage Village Merry Little Christmas Fair on Sunday 8th December from 10am till 4pm.  Thank you for all your kind donations of items to sell ?

Please come along and join us if you can …I’ve heard there will be mulled wine! ?

GoFundMe

99 The story so far …

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 ….

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.

Hopefully I’ll have an appointment update by this time next week!

GoFundMe

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Twitter @AnotherMSWarrio

97 Still waiting

Well another week has gone by and still no Sheffield appointment!  I have anxiously awaited the post each day, but only bills and junk mail seem to have landed on my doormat this week. 

I have tried emailing Professor Sharrack’s secretary but no reply there either, despite me signing a consent form to say I was happy with email communication. Perhaps emailing them the consent form doesn’t count?!

On Monday, I phoned the professor’s secretary and she was able to confirm that my scan report has arrived, but I’ve not yet been allocated an appointment.  She was unable tell me what the report says, but promised to give him a nudge about my appointment.  

… so the wait continues.

A while ago I mentioned that I was making a concerted effort to lose some weight.  I’ve always struggled with my weight, particularly since hitting a certain age and even more so now my mobility has decreased.  I’m definitely a person who is inclined to comfort eat and the emotional challenges of this disease have certainly left me in need of comfort.  

Anyway, a couple of months ago I decided the time had come to take drastic action!  I decided I needed some serious help this time (I have done LOTS of diets) and after some research, chose the Cambridge One2One Diet.  This involves consuming meal replacement smoothies, shakes and bars and a weekly weigh in and chat with a consultant, who has helped to keep me on track. Thank you so much Julia.  I am still half a stone from my target weight and a “normal” BMI but I’m feeling so pleased with my progress that I thought I’d share it with you.  These two photos are taken exactly a year (and 35lbs) apart.

As well as wanting to look and feel better and improve my general health, there is another reason why reaching a healthy weight is important for me at the moment.  HSCT involves the use of high dose chemotherapy, which partly destroys the immune system.  Chemotherapy is hard on the body, in particular on the liver and kidneys and the dosage for each patient is calibrated to their body weight.  So by reducing my weight, I am reducing the dosage of chemotherapy I will need.

If you’d like to know more about the Cambridge One2One Diet, please visit their website by following this link …

Cambridge One2One Diet

If you live in Stockport and would like to know more, please give me a shout and I’ll put you in touch with Julia.

95 HSCT in the news

I am a teacher and finally finished work on Friday for the five week Summer holiday.  Some of my colleagues have plans for travel to exciting places, but I’m mostly staying home and trying to save money.  The weather isn’t exactly conducive to having fun, also, I can’t walk with an umbrella and my raincoat has a broken zip, but I’ll try my best!

I should have an appointment with the team in Sheffield in a couple of weeks and will find out if there is any chance of them treating me here. If that leads to nothing, I want to get myself to the clinic in Russia as soon as I can.  This uncertainty makes life feel a bit in limbo and it’s difficult to make plans.  Over the last few weeks I have wondered about trying to book a cheap last minute holiday while I’m off work, but it feels wrong to be spending money on such things until I know which direction I’m going.  Not that I have much spare money – reducing my working hours by a fifth has obviously reduced my income by a fifth, so whilst that’s better for my health, it’s a lot worse for my bank balance!  There is no system to support those with a disability or health problems who can still work, but can’t manage full time hours, although I have just found that I may be eligible for PIP (Personal Independence Payment) so will start the gruelling assessment process while I’m off work. 

So, to HSCT in the news …

The profile of HSCT is rising all the time and it will soon be very difficult for neurologists to dismiss it, as some do now. I was delighted to hear this bit of news recently – the team in Sheffield have recently won the NHS Futures Parliamentary Award for their pioneering work on stem cells transplant (HSCT) to treat Multiple Sclerosis.   Click here for a full report …

Pioneering Multiple Sclerosis Stem Cell team win national NHS future Parliamentary Award

Congratulations Professor Sharrack, Professor Snowden and the rest of the Transplant team ???

I have written before, about the Hollywood actress, Selma Blair, who was diagnosed with MS a couple of years ago and has spoken openly in the media and via her Instagram account about her struggles with the disease, coming to terms with the diagnosis, the impact on her life and her search for the best treatment.  For the last few weeks, the content of Selma’s online activity has led many of us to believe that she was undergoing HSCT with Dr Burt in Chicago, and it turns out we were right!

Selma is in the early stages of recovery at the moment and I wish her well.  Once she’s strong enough, I’m sure she will become a truly fabulous HSCT advocate ??

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As you know, we have paused our fundraising efforts for the time being, until we know whether further funds are needed, however, there is still some activity in the back ground and I was delighted to receive a surprise donation of £75 this week.  The money came from a collection box in the Cash and Carry at Stephensons, so I’d like to say a big thank you to all their customers and staff.

The Cash and Carry is well worth a visit, even for those of us not in the catering industry …many kitchen related bargains to be had!  Find out more here …

Stephensons  

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In my last blog post, I listed 9 MRI scan tips and was struggling to come up with another to round it up to a perfect 10. Over a week later and I’ve thought of one!

10. DON’T start to cry when you are in the machine! You can’t move your head or raise your hand to your face, so the tears form two perfect puddles over your eyes …not comfortable at all and plays havoc with your mascara.

93 This is what keeps me awake at night …

I have spoken before about the published criteria for being considered for HSCT in the UK on the NHS. They are as follows:

  1. Diagnosis of MS made by a neurologist 
  2. Able to walk, needing at most bilateral assistance to walk 20m without resting 
  3. In relapsing MS (RMS), failed one licensed disease modifying drug of high efficacy (currently including alemtuzumab and natalizumab) because of demonstrated lack of efficacy 
  4. New MRI activity within last 12 months 

Previously, I met all of these apart from number 3.  More recently, they have relaxed that particular criterion in some cases and Professor Sharrack seemed to agree with my argument that as an older MSer, it would be counterproductive to use valuable time trying out various drug regimes.  Some experts are also of the view that HSCT is more likely to be successful in patients who have not already had their immune systems compromised through the impact of the stronger MS drugs. 

By the time of my meeting with Professor Sharrack in June of this year, criterion 3 was no longer being strictly applied, but as over 12 months had passed since my last MRI, I found that I no longer met criterion 4!

  • So, in May 2018, I met all the criteria except number 3.
  • And in June 2019, I met all the criteria except number 4.

This is what is keeping me awake at night!  I have a nervous wait to see what the MRI shows. I have certainly had worsening of symptoms during this time, but this can be caused by new disease activity or by the body struggling to cope with previous damage to the brain and spinal cord (known as secondary progression).

It is Professor Sharrack’s view that HSCT is not effective for those with secondary progression, although international data suggests otherwise.  I am a member of various HSCT support groups and have had conversations and read the blogs of numerous people with Secondary Progressive MS, who have had success in halting the disease using HSCT.  

Another confusing factor is that it is just 2 years since my diagnosis and 7 years since my first symptoms and typical disease evolution is for Relapsing MS to become progressive after about 15 years.  Clearly my understanding of MS is still at amateur level!

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There has been a bit of excitement in the world of HSCT during recent weeks as fellow MSer, Selma Blair appears to be having HSCT.  Selma has been very open about her diagnosis, her struggles with the disease and her search for treatment and support.  She is, quite understandably, being less open about her ongoing treatment but has mentioned she is being treated by Dr Burt (HSCT guru) in Chicago.  I’m really hoping we see a happy ending to this story at some point in the future.  

Back in April, I told you that Gogglebox star and fellow MSer, Scott McCormick was receiving HSCT at Hammersmith Hospital in London.  Scott has been safely home with his family for a few weeks now, is doing well, sleeping lots and keeping us amused with his occasional MS:UK videos and twitter posts!  As you can see, he has also had to embrace quite drastic change in his appearance! 

Scott and his wife, Georgia are also very encouraging of other MSers considering HSCT, which is very much appreciated.