Tag: Scott McCormick

111 Mrs Bump

There has been a lot going on over the last couple of weeks so thought I’d come back with an update.

Sheila ran another stall at the Vintage Village on Sunday and raised a very respectable £116.  Alan very kindly sold a few items of clothing through his vintage shop, 20th Century Stores and raised a further £90.

So the vintage sale fundraiser had brought in a grand total of …

Thanks again to Alan and the Vintage Village, but most of all, to my lovely friend Sheila for so much hard work and for all your support ?

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Thank you to family and friends who have decided not to send Christmas cards this year and to make donations to my fund instead.  This has raised a total of £470 …absolutely amazing!  Thank you everyone ?

We had hoped to hit £20,000 by Christmas, but with all these amazing efforts, our grand total now stands at …


I had an appointment with my neurologist on Monday …always a bizarre experience.  Neurology services are obviously over stretched and trying to summarise a year’s worth of symptoms, concerns and questions into a rushed 10 minute appointment isn’t easy.  By the end of the appointment, it was agreed that he will refer me to occupational therapy, write to Professor Sharrack and prescribe medication to address my fatigue and brain fog (assuming liver and kidney function tests are all good).  He also suggested I stay off work until the end of term. 

I have heard nothing further from Professor Sharrack and will find the energy to chase him again soon. 

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Today I managed to fall down the stairs …I’m not quite sure how this happened, but I think my legs just gave way beneath me and before I knew it, I was on the floor at the bottom of the stairs!  

Luckily I only have bruises, but I must admit I’m feeling a bit shaken by the experience.  Steep Victorian staircases are not best ever for MSers it would seem! 

I have only lived in this house for a little over 2 years and I was obviously aware of the unusually steep stairs, but had no idea how much of a challenge they would become for me. I mostly go up them on all fours, which seems to work well. Coming down stairs is a different matter and I really don’t feel safe a lot of the time.

I’ll add it to the list of things to worry about! ?

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You may remember a while ago I posted about Scott McCormick (From Gogglebox) undergoing HSCT at Hammersmith Hospital. Scott has been recovering well and has been keeping us all informed of his progress. He recently had an MRI scan – an insight into whether his MS has halted or not – today he got the results …

I am absolutely delighted for Scott. He has shared his journey on twitter and through videos he has made for MS-UK and the HSCT community has been following with interest. It has been wonderful to see him get better and better and to know that he is now looking forward to a happy healthy future with his family. I’m sure Scott will be a powerful voice for HSCT going forward and we are all very grateful to him for sharing his experience.

GoFundMe

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.