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
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Thank you all so much for your continued support and kind words. It really means a lot ?
We’d like to ask for your help …and it won’t cost you a penny!
We would like to try and increase the online presence of my fundraising pages. This is because we plan to start appealing to businesses and contacts for donation of items and services we can auction, or give as raffle prizes at an event we’re planning for early in the new year.
We’d like to give all donors a mention and it would benefit them most if we have as wide a readership as possible.
So, here’s what you can do to help …
Subscribe to my blog anothermswarrior.com so that you receive email updates on new blog posts. You can always direct the updates to your junk folder if you don’t want to read them! At the moment, we are getting a lot of hits and people reading through from page to page, but don’t have many subscribers currently 2640 hits and 18 subscribers.
If you are on Facebook, you can Like and share our page Another MS Warrior . Liking, sharing and commenting on posts helps too currently 54 page likes.
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We are so grateful for all the support we have received so far …there is still so much kindness in the world ❤️
Today I had a visit from an occupational therapist and a physiotherapist from my local Team for Adult Rehabilitation (STAR).What amazing people they were – so thorough, kind and helpful.
They advised me on walking stick height, exercise to improve balance, welfare rights, work life balance, issues with parking at work, slippers(!!), fatigue, vision and the importance of staying active.They are arranging for a hand rail to be fitted in my bathroom and have given me advice on walking up and down stairs.They were sympathetic and supportive when I became a little tearful.
I am keen to improve my general level of fitness (and to lose some weight) and am to be referred to a supported scheme at my local gym (funded by the NHS).I am also being referred for counselling.
I am amazed at the level of support available to me and feel so grateful that I live in a country that provides this safety net for people experiencing difficulties (I know we don’t always get this right for everyone).I struggle so much with asking for help but they totally understood that feeling.They encouraged me to make decisions for myself on my next steps and reassured me that accepting help enhances my independence, rather than reducing it.
Losing my independence is the thing I fear the most and they were able to help me to see that I can use this feeling in a positive way, to give me the determination to keep living my best life!
I had a lovely spa day with Niamh yesterday, during which we had lots of time to talk. Niamh told me that the first time she saw me using my walking stick, she felt quite tearful, though hid that from me at the time.This led to a general conversation about how it can be tricky to know when to offer help and if that could ever cross the line into “fussing”.
I remember an occasion when I was much younger and saw someone I vaguely knew waiting to cross a busy road.Knowing that she was blind, I went over and offered to help.She immediately replied “I’m blind not fucking stupid!”.I remember being upset that she had interpreted my efforts to be helpful as something insulting or patronising.
I realise this can be a bit tricky for people but my view is that people are generally kind and supportive and this is what they are expressing when offering help.So, I want to take this opportunity to say I will never take offence at any offer of help as long as you don’t take offence if I say “no thanks”.
My lovely work friends often offer help and a couple of them, rather than repeatedly offering have said “if we’re walking together, feel free to link me, it’ll always be fine”. This kindness means such a lot to me ….thank you ❤️
