On 16th March 2020, I should have been flying to Moscow for a month long hospital stay to receive HSCT, in the hope that this would halt the progression of my multiple sclerosis. During March 2020, the whole world gradually went into lockdown due to COVID 19 and on the Thursday before I was due to depart, my flights and treatment were cancelled.
Before this, I’d spent the previous two years preparing for my trip … fundraising, making arrangements for post HSCT care, arranging time off work, preparing to make my home as germ free as possible, losing weight, eating well and mentally preparing for my treatment and recovery. I felt positive, determined, relatively healthy and as ready as I could be. HSCT was the main focus of my life.
It was devastating for everything to be cancelled at the last minute and I must admit, the weeks and months after that were a struggle. At the time, like everyone, I believed the new situation would last for just a few weeks or months, at the most, and I was determined to get my treatment plan back on track as soon as possible.
As time went on, I began to realise that this new situation was going to last much longer than we all expected. I also began to worry about having a treatment that virtually eliminates the immune system, during a worldwide viral pandemic. Once travel became possible again, the clinic in Russia reopened and was soon treating patients from all over the world as before.
On 24th February 2022, Russian forces invaded neighbouring Ukraine and there has been ongoing military action there since, with many of Ukrainian people brutally killed and many thousands more displaced, losing their homes and the lives they once knew. The rest of the world initiated sanctions on Russia (and Belarus), including restricting financial transactions and travel. The clinic in Russia has continued to treat patients, with most travelling via Turkey and paying by use of complex international banking arrangements. I have no reason to distrust anyone working at the hospital, but would not feel it ethically acceptable for me to pay money into the Russian economy, or to travel there at the moment. By this I mean, I don’t have any criticism of those who are still seeking treatment in Russia, but I don’t believe it would be right for me.
There are two hospitals in Mexico, with an excellent reputation for providing HSCT for international patients and these would certainly be an option for me if I wanted to proceed; the biggest draw backs being higher cost and further distance to travel.
There is much discussion in the world of HSCT about which patients are the best candidates for successful outcomes. It seems that some of the key factors are age; time since disease onset; disease type; presence/absence of current inflammation in the brain and/or spinal cord and EDSS (this is not an exhaustive list). Some of those for whom treatment isn’t successful, actually become more unwell following HSCT and there is a connection between these risk factors and mortality rates too.
From 7 things you need to know about HSCT | Multiple Sclerosis Society UK
Age … HSCT seems to be most effective in people who are treated when younger. There are people who have received HSCT well into their 60s or 70s, but evidence seems to show that those in their 20s, 30s and 40s people are more likely to have successful outcomes. The upper age limit for the STAR-MS trial ongoing in the UK is 55. my current age is 57.
Time Since Disease Onset … Evidence shows that HSCT is most effective for those in the early stages of the disease, with 10 years often quoted as the upper limit. Calculating the length of time since disease onset is much more difficult than it would appear. I was diagnosed in 2017, but my first known symptoms were in 2011. I had various health problems and unusual symptoms for a number of years before this and it’s possible that multiple sclerosis was the culprit.
Disease Type … I was initially diagnosed with RRMS (Relapsing Remitting Multiple Sclerosis) and this is known to be the “type” of MS that is most likely to respond well to HSCT. This presents as periods of disease activity with periods of remission, during which symptoms may subside or even disappear. Over time, many of those with RRMS transition to SPMS (Secondary Progressive Multiple Sclerosis) where there is a slow general increase in symptoms with no periods of remission and no recovery from symptoms. It is difficult to pinpoint the time of transition from RRMS to SPMS and the diagnosis is usually made retrospectively. My neurologist believes I am now secondary progressive with superimposed relapses, although these are becoming less frequent. I take this to mean that I am transitioning to SPMS.
Presence/Absence of Inflammation in the Brain and/or Spinal Cord … HSCT is thought to work by reducing inflammation in the central nervous system and acting on the process that would cause future inflammation. In SPMS, it is less likely for there to be ongoing inflammation, with symptoms caused by previously incurred damage to the brain and spinal cord and the body’s reduced ability to compensate for this as we get older. My last MRI (July 2021) showed no ongoing inflammation and no new lesions.
EDSS … Disability in MS is measured using the EDSS (Expanded Disability Status Scale) and although there is much criticism and discussion about the appropriateness of this system, it is still used by hospitals providing HSCT. For the clinic in Russia, the upper EDSS limit is 6, although the hospital in Mexico will consider those with a higher EDSS. Two years ago, my EDSS was 6, however, I think there is a possibility that it is now 6.5. Those with a lower EDSS are more mobile, are likely to be more active and generally in better health, making treatment and recovery a little easier.
I’ve been thinking about all of the above over the last months, had discussions with various friends and family members and have reached the difficult conclusion that HSCT is no longer for me. It has been a tough decision to make and I wanted to give myself time and to feel sure that it is the right one for me. I still believe that HSCT is an amazing, life changing, treatment for many and there is much hope for MS patients in the future. Basically, I feel timing is all wrong for me and I no longer feel it is my best option.
This decision leads me to thinking about how to manage the funds that were raised and that so many friends, family and strangers contributed to. The source of these funds falls into 4 main categories and I am proposing dealing with them as follows:
- Donations from individuals … give donors the choice of where this money goes (return, AIMS or other medical expenses).
- Money raised via events and sponsored activities … use for other medical expenses.
- Money raised selling jewellery and other items previously owned by my mum … use to fund a family get together (this is what we originally planned for this money but my family kindly donated it to my fund).
- My own savings … return to my own bank account.
If you have contributed in any way to these funds, please do let me know if you have a view on this. Thank you to the various friends and family who have already given me a chance to talk this through with them. Whatever is decided, full details will be published here and on the GoFundMe page.
I have mentioned other medical expenses above and I thought I’d explain a little about what I mean by that.
At the moment, I pay for CBD and for one of my thyroid medications that is not available on the NHS. I hope to try LDN and Ampyra in the future; both are only available by private prescription in England. Being chronically ill is very expensive!
In November, I purchased my rollator (henceforth known as my “chariot”) as such equipment is not provided by the NHS. I bought a relatively cheap one, as I was unsure of how useful it would be to me. In fact, it has proved to be very useful and has kept me walking at times that would have been beyond me with just a walking stick or trecking poles. Now that I’ve had some experience, I realise that the specifications of my chariot are not ideal for me and I will need to buy a more suitable one in the future.
I am also now thinking about a mobility scooter and these are very expensive. I realise that it is really important to me to retain as much independence as possible and to be able to go out and about and do as I please. A mobility scooter may help provide this.
In addition I find myself considering private neurology, physio therapy and orthotics assessments in order to get the best possible advice on how to manage my MS and symptoms. Currently I have a 10 minute appointment with my neurologist once a year and I have been on waiting lists for physiotherapy and orthotics since April 2020. My MS Nurse has retired and despite making numerous phone calls, I am still awaiting an appointment with her replacement. My mobility has deteriorated markedly since 2020 and I’m becoming worried that I will soon be beyond any activity or devices that could help me to make the most of life.
In redistributing the funds we have raised, I want to ensure I am completely open and transparent about where the money goes and what it is used for. I’d like to help others who may benefit from HSCT and I’d like to try all I can to stay as well as possible for as long as I can, even if HSCT is no longer the route towards that for me.
I want to make it clear that I have made this decision for me (with help from family and friends) and I know it is the right decision. I am not a neurologist or expert in MS, just a person doing their best to manage their disease. If you have MS, I don’t want my decision to influence any decision you make for yourself. I also point out that the points listed above, that influenced my decision, are just my interpretation of my situation, following much reading and research over the last few years. I know the situation is not simple and that I will have got things wrong. Please do your own reading and research before making a decision for yourself. I have added some useful links below, as a starting point.
I hope no one is disappointed that I have made this decision, particularly those who have supported me and given your time and money towards helping me. I will be forever grateful for all the love and support I have received since I began considering HSCT.
You are all amazing ??
If you have made it to the end of this post, thank you and well done! (I know its rather long and not that interesting!).
Links
AIMS https://www.aimscharity.org/
UK HSCT Facebook page https://www.facebook.com/groups/ukhsct/?ref=sharehttps://www.facebook.com/groups/ukhsct/?ref=share&exp=7ffb
HSCT in Russia https://hsct-russia.com/
EDSS https://mstrust.org.uk/a-z/expanded-disability-status-scale-edss
GoFundMe https://www.gofundme.com/f/another-ms-warrior
CBD (Please search CBD Brothers)
LDN https://ldnresearchtrust.org/what-is-low-dose-naltrexone-ldn
Ampyra/Fampridine https://mstrust.org.uk/a-z/fampridine-fampyra
