neurologist – Another MS Warrior

129 What’s happening with my MS?

Hello dear readers, I’m sorry for neglecting you of late. Today is my 66th day in lockdown and as everything is on hold, there really isn’t much to report!

I’ve had lots of messages and questions from family and friends about how my MS is affecting me at the moment and my plans for treatment, so I thought I’d write a bit of an update.

Over the last few weeks, I have had telephone appointments with my GP, an occupational therapist, a physiotherapist, my neurologist in Salford and with the neurology team in Sheffield. My long awaited appointment with the MS Nurse has been delayed as she has been redeployed due to the pandemic.

The situation with Professor Sharrack in Sheffield is that he believe that I have Secondary Progressive MS with superimposed relapses. This would exclude me from their criteria for HSCT treatment there. They would like me to have a further MRI scan, which they will compare with the previous one, before making a final decision. At the moment, the hospital is not carrying out routine scans, so this is likely to be on hold for several weeks/months/who knows?!

My own neurologist is very concerned about the length of time I have been without treatment and would like me to try another DMT (Disease Modifying Therapy). He understands why I am pursuing HSCT but feels that it won’t be safe to travel for treatment for quite some time (a year or more was mentioned) and would like me to be protected from further relapses during this time. So I have agreed to try Tecfidera. This is taken in tablet form and reduces both the frequency and severity of relapses. My neurologist thinks I am having lots of mini relapses, so hopefully this drug will reduce them.

You can read more about Tecfidera here … MS Trust – Tecfidera

Regular blood tests are required when taking Tecfidera, including an initial test to check liver and kidney function, full blood count and diabetes status. So, last week I went to Salford Royal Hospital for the test. It was a very strange experience, having not left my local area for weeks and only occasionally driving around the block.

The hospital was eerily quiet and no one seemed to be wearing a mask, except me! I was asked some COVID questions and had my temperature taken on arrival (by a man not wearing a mask) and several vials of blood were quickly taken (by a nurse who was wearing a mask).

I have also been prescribed a drug that may help with my debilitating fatigue and brain fog and started it this week. It takes a few weeks to begin to take effect, so fingers crossed it works for me 🤞🏻The drug is called Amantadine and is an antiviral which has been found to help 1 or 2 people in 5 with MS fatigue, although the mechanism for this is not known. It is sometimes used to treat people with Parkinson’s Disease as well.

you can read more about Amantadine here … MS Trust – Amantadine

I am still off work and my GP would like me to stay off until both new drugs have had a chance to kick in. I have very mixed views on this … some days I feel that I could manage work (at home of course) and on other days it feels like an impossibility. Being at home has given me lots of time to think and come to the realisation that I need to make some changes in the long term (whether I eventually have HSCT or not) …I have no idea yet, what those changes might be.

I have been continuing on my daily walk most days and some days this has been quite a struggle, as my left leg tends to drag and can often feel like a heavy, dead weight by the time I’ve walked a few hundred yards. A couple of weeks ago, I developed a severe muscular pain in the right side of my lower back. I spoke to my Occupational Therapist about this and after much discussion, she worked out what was causing this problem. Most of the time, I wear flat ankle boots when out and about, as I find these comfortable and benefit from the ankle support, especially on my left foot. When the warmer weather arrived, I started wearing flat lace up pumps and was aware that my left foot was dragging and would sometimes catch on the ground. The OT worked out that I was leaning slightly to the right in order to accommodate my dropping left foot and that this was the source of my back pain … how amazing is she?! So I have now been provided with a device to help lift my left foot, which should reduce tripping risk and take the pressure off my back.

It’s ugly and a little uncomfortable, but I’m going to persevere with it. If it keeps me mobile, who knows, I may grow to love it!

A combination of Tiger Balm, hot water bottle and gentle movement has healed my back pain, so I’m back on my feet again.

I hope you are all staying as safe and well as you possibly can 😘

128 Where am I up to?

Isolation day 47 and I can no longer remember my old life! This has been the strangest few weeks any of us have ever known and I think it’s beginning to take its toll. What did I used to eat? Does the rest of the world still exist? What’s the cat trying to tell me?

I’ve had numerous conversations with friends and acquaintances who are experiencing sleeplessness, exhaustion and nightmares! I don’t often remember my dreams, but I sure do know how they are making me feel at the moment. I’m waking up most nights (that’s after spending a good couple of hours tossing and turning trying to fall asleep in the first place) feeling panicky, scared and stressed after a bad dream. Apparently we use our dreams to process our thoughts and feelings, so if you consider how much change we are now living with, it’s not surprising we have a lot of anxious thoughts to process! I hope someone is doing a study of this somewhere, as it’s actually quite fascinating 🤓

I sometimes use a meditation App called Calm, to help me relax and to get off to sleep. I’m still using it, but even that isn’t quelling my general anxiety. It is quite comforting to find that lots of us are experiencing this difficulty at the moment, but I do worry about how this will impact us in the long run.

As well as dealing with life in lockdown, missing family and friends, worrying about loved ones and about the planet and wondering whether Vodka can really be classed as an “essential item”, I am also experiencing an upturn in my MS symptoms, as well as the disappointment and implication of the cancelling of my treatment.

I’m not going to talk much about my MS issues here, as I plan to log a full inventory of my current symptoms in another blog post at a later date.

As you know, I was all geared up to fly to Moscow on 16th March, to stay for a month to have HSCT to treat my MS. It was a long and difficult journey just to get to that point – 2 years of fundraising, lots of stress, visa applications, flights booked then changed and lots to prepare for my time in Russia, my journey home and making the house safe for my return. When anyone mentioned a time in 2020 that was beyond the 16th March, it didn’t really exist in my head. My whole life was geared up to getting there and getting it done! 💪🏻

It was Thursday 12th March when I heard that the hospital was having to put new restrictions in place, which ultimately led to me postponing my treatment. It was a really tough decision but ultimately it was the right one. If I’d gone to Russia, I might not have been able to get home and My COVID fear would have been through the roof. Life may be challenging now, but at least I’m safe as I can be, in my little house with my 2 crazy cats.

Luckily my flights were cancelled by the airline, so I should be able to get my money back … I’ve been trying to get through to them for 7 weeks now, with no success (unless you count sitting in a 2 hour telephone queue success). I’m hoping that will all got sorted out eventually.

I had already sent the payment to the hospital for my treatment, a complicated international money transfer, but there was a delay in it getting there, due to everywhere beginning to shut down around that time. It arrived eventually and the hospital sent it straight back, but it hasn’t got to me yet. I’m told it’s somewhere in transit and not to worry (but of course, I do!).

I had to let my GP know that I was still at home, then my neurologist and the team in Sheffield. I am due for a further MRI scan in Sheffield as soon as it is safe to travel there. Theoretically there is still a very slim chance I could be accepted for treatment there, so it’s certainly worth me pursuing this.

I had a neurologist appointment in Salford booked for the 5th May and an MS nurse appointment at Stepping Hill booked for the 28th April. I was notified that both would be telephone appointments and then later notified they were cancelled. I’ve had a new neurologist appointment arranged for April 2021!!

Chronic illness is an area where our health system struggles. Most of the neurology team that I have met are hardworking, dedicated experts in their field, but they are so poorly funded and have to spread themselves so thin, that they struggle to provide an adequate service. Phoning and demanding to be seen usually works, but it shouldn’t be this way and I find it exhausting and frustrating.

I went back to work around the time that lock down was beginning and was working from home. At first it felt good to have something else to think about and to have that contact with colleagues. But as time went on, I started to struggle with increased pain, fatigue, brain fog and anxiety, so have made the difficult decision to stay off work for now.

So, where am I up to? Will I ever have HSCT?

The answer to the second question is that I really don’t know. The situation we are now in has really frightened me. There is no treatment for COVID 19. In severe cases, all the medics can do is treat symptoms and do all they can to keep you alive, whilst your immune system fights the virus. The immune system remains compromised for quite some time after HSCT and it can take 12-24 months for it to return to normal. If I were to catch the virus during that time, particularly in the early weeks and months, this would be very risky indeed.

Most clinics offering HSCT currently have their treatment programmes on hold because of this and there has been no treatments started in the UK, Europe or Russia during the last few weeks. Initially the clinic in Russia offered me a new date in July, but I don’t think it will be safe enough for me to do it then and I’ve recently heard that they are possibly closing until at least September. Looking forward, it’s hard to see a time when it will feel safe enough, with concerns about the journey home, particularly frighting.

So, everything is in limbo and I’m just doing my best to live with it!

Stay safe everybody ❤️

117 MS and HSCT online roundup

I am so glad to have this illness at a time when we have access to information, opinion and support online. If my only source of information was my neurologist, my life would be a complete mess by now!

I am a big supporter of the NHS, my parents were both GPs and I’ve been on marches to protest funding cuts, but … I really don’t think the NHS has it right yet, in managing chronic illness and supporting patients with long term health problems. It is common for MSers to have a long fight to be taken seriously, to be referred to a neurologist, to be diagnosed and then to receive appropriate treatment and support.

Meanwhile, in other parts of the world, rapid diagnosis and early treatment has been shown to be the best option for patients in terms of minimising progression and disability and the most cost effective for health services.

At present, I see my neurologist for 10 rushed minutes once per year. He doesn’t even ask me about new symptoms or my opinion on anything! It’s a very deflating experience and I don’t feel at all supported (probably not his fault – what can he do in 10 minutes?). I should have had access to an MS Nurse for ongoing support and advice for the last few years, but unfortunately my neurologist forgot to refer me and I have slipped through the net (despite numerous phone calls and requests from me).

I recently had an appointment with an Occupational Therapist, which has been a really positive experience. She has given me advice, access to equipment and most of all, she has listened to how MS affects my life. She has also managed to chase up the MS nurse service and they are finally acknowledging my existence! Thank you Hannah 😊

I have learnt a lot about MS through reading and researching online. The MS Trust, MS-UK, Shift MS, the MS Society (amongst others) are all excellent sources of information and guidance. Another source of knowledge is Dr Aaron Boster, who is an Ohio based MS neurologist with a Youtube channel, where he seeks to educate and empower people with MS. Dr Boster works on the premise that neurologists and other practitioners working with MSers should have the goal of helping each person to be the “most awesome version of themselves”. I love this! I want to be the most awesome version of me that I can be! Here’s a short video in which he answers viewers questions on how to manage their MS symptoms …

There are many other videos on a variety of topics linked to MS on his YouTube channel … well worth a look if you, or someone you care about, has MS.

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I have spoken before about following the journey of Scott McCormick (Gogglebox) as he underwent HSCT at Hammersmith Hospital in London. Scott is recovering well, has had no further disease progression and is now back at work and enjoying life. He is doing all he can t raise awareness of HSCT.

He has written a couple of blog posts for MS-UK to summarise his experience …

Part 1 My neurologist tried to talk me out of having HSCT

Part 2 I was told to expect the worst I could imagine, and then some

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My main source of information, advice and personal accounts of those who are seeking or have had HSCT has been through the UK Facebook support group. This is a closed group for MSers and their supporters only.

I thought I’d share the link in case any fellow MSers are interested … link

Another source of support is a new UK charity, AIMS (Autoimmune and MultipleSclerosis), which was set up a little over a year ago. A group of MSers and their partners experienced the tough journey to access HSCT and they set up AIMS as a means of helping others on that journey. They are now a flourishing charity and have started rolling out travel grants to those of us having to go abroad for treatment.

You can read more on their website here. I would recommend anyone who wants to know more about the treatment, to read their excellent summary “What is HSCT?”. AIMS also have an active social media presence and can be found on Facebook and Twitter …please follow them and share with your friends.

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On Monday it will be just 6 weeks until I set off on my journey to Moscow in an attempt to stop my MS progressing further. I’m feeling really positive about my decision and so grateful for the support of my family and friends ❤️

I’m a little tired and stressed, but this is more about the worry of getting myself and my home ready and managing all the planning and practicalities involved.

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We are still fundraising and have a long way to go before we reach the total needed to fund my treatment. A family member is kindly lending me the outstanding funds as I am worried about delaying my treatment any further. This means that I will be continuing to fundraise after my treatment so that I can repay my loan.

My journey to Russia begins on Monday 16th March and we are holding a fundraising fare well tea party on Sunday 8th March. We’re still finalising the details and will share those with you soon, but please put the date in your diary … we’d love you to come along and bring your friends and family 🧁

GoFundMe

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

91 Sheffield update

I want to begin this blog post with a big thank you to everyone who has been in touch, wished me luck, and offered supportive words and hugs this week. It means such a lot to me and I am very grateful for the wonderful friends and family I have in my life.

My visit to the HSCT Clinic in Sheffield was interesting, mostly positive and very exhausting! I had a full neurological examination (involving being prodded with pins, hit with hammers and having tuning forks held on my joints!), a long discussion with a neurology registrar, meetings with Professor Sharrack (Neurology) and Professor Snowden (Haematology), a discussion with two haematology nurses and had bloods taken.

I am now waiting for an MRI scan (mid July) and a further appointment with the professors (mid August) for a final decision. I have found myself in the rather peculiar situation of hoping that this MRI scan will reveal new disease activity – my last three have, but the most recent was 13 months ago and the Professor is interested in the last 12 months.

The haematology nurses provided me with a lot information about the treatment and how this is managed in Sheffield. They have treated 60 MS patients there over the last few years, with the number treated each year gradually increasing. I was very impressed with the level of care and excellent treatment planning I heard about.

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I have a couple of fundraising updates to tell you about …

My beautiful niece and her friends ran a stall at their school and raised a fantastic £25!! Thank you Anna and friends xxx

A while ago, I took a box of unwanted bits and pieces to Maxwell’s Auction Room, hoping to raise a couple of hundred pounds. Today I received a cheque for £450! Such a lovely surprise! There are a few items still to sell (in a “collectors auction” in July) so hopefully more to follow. If you have any old rubbish in your loft, I’d really recommend taking it to the auction room.

Maxwell’s Auction Room

Maxwell’s is used on TV in Dickinson’s Real Deal and Cash in the Attic

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Obviously, with the timescale of things in Sheffield, I’m going to have to revise my plans around treatment in Russia and continuing to raise funds. I hope to let you know about that very soon. I have been discussing all decisions with my family throughout this journey and they have been a huge help and a source of really useful ideas and advice.

Thank you again for your ongoing support ❤️

80 Escalation vs de-escalation

I thought I’d write a post about my views on the treatment escalation model for Multiple Sclerosis widely used in the UK and throughout the world.

There are currently 13 Disease Modifying therapy drugs available in the UK and these are categorised by efficacy in to three groups: Moderately effective, More effective, Highly effective.

Potential side effects are more severe for the drugs with higher efficacy.

Discussing DMTs is always challenging as they all seem to have such complicated, hard to pronounce names and on top of this, most are known by two names – the generic drug name and the brand name. Bear with me if you can!

I have cobbled this together from the MS Trust website, to show the drugs in their three categories …

Further information can be found here … MSTrust

Most MSers are offered DMTs following an escalation model that looks a bit like this …

Patients are initially offered first line treatments, also described as “moderately effective” drugs. If they continue to progress or relapse, or are unable to manage side effects, they are then offered an alternative first line treatment. As these drugs can take many months to have an impact, each cycle of trying and failing can take up to a year or more.

Once first line treatments are deemed to have failed, patients are offered second line treatments and eventually third line or “highly effective” treatments.

By this time, several years may have passed and the MSer may have acquired significant permanent damage to their brain and spinal cord, resulting in long term disability and daily difficulties.

DMTs don’t treat symptoms, reduce pain or improve disability. In a sense they are an attempt to “future proof” and reduce further disease progression and damage to the central nervous system. Many MSers and indeed, neurologists are now asking questions about why patients can’t be offered HIGHLY EFFECTIVE treatments from the onset of the disease. Imagine being offered a treatment that has a higher likelihood of reducing relapses and progression and therefore reducing damage? It makes perfect sense to me.

For many, the most effective drugs will control their MS and allow them to live a normal life. For others, they will still have occasional breakthrough disease, which can then be addressed by one of the lower efficacy drugs.

Several high profile forward thinking neurologists are now actively promoting this de-escalation model as a more effective treatment plan than the current escalation model. Some are also including HSCT as a first line highly effective treatment.

Some neurologists are no longer offering first line treatments at all. These are mostly drugs developed 20-30 years ago which, at the time, where the only treatments available. Newer more effective drugs have become available but for some reason, these drugs with low efficacy are still being broadly offered. This doesn’t seem to happen in relation to treatments for other conditions. When newer, better treatments are developed, the older less effective treatments are relegated to history. This hasn’t happened with MS and it’s really not clear why.

Change is slow to come and all the time each person with MS is experiencing more damage to their brain and spinal cords. My own neurologist is stuck firmly to the escalation model, meaning it could be several years until I qualify for highly effective treatments …by which time I could be experiencing much worse symptoms, but may be too old to be considered for those treatments.

Many people with MS are frustrated with the system and the neurologists who care for us. The disease is like a ticking time bomb and we each have no idea how it may progress over time. Even those whose disease appears inactive, may be experiencing silent progression in the back ground. Leaving us to deteriorate whilst denying us the most effective treatments is devastating.

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Tomorrow, this gorgeous young man is taking part in a sponsored fun run to help raise funds for my treatment. Good luck Bobby …you are a superstar!

57 Ask me a question …some answers

When did you know you have MS?

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

Thank you all so much for your continued support and kind words. It really means a lot 😘

54 Neurology appointment

I finally got to meet my new neurologist yesterday and to find out why I won’t be seeing the old one. It turns out that my previous neurologist has left the NHS, in fact, he has left the country and has returned to Malta! My political mind wonders if this was Brexit related …I guess we’ll never know.

So my new neurologist was doing an additional catch up clinic for those of us left without a neurologist. He was a nice man but the whole appointment felt a bit rushed and pointless. He wants me on another DMT, but didn’t ask how I felt about that and he wasn’t aware of my letter enquiring about HSCT.

I asked him about HSCT and he looked a little flustered then explained that he thought it was likely helpful for some patients, but that we need more large group, long term clinic trials to be clear on who it might help. He also said that there was a number of drugs left for me to try, before considering anything more drastic.

He briefly mentioned “people who fundraise or sell their homes” to pay for treatment abroad (not realising that I am on my way to being one of them) and made some strange claim about those patients claiming to have improvements or to have halted their MS, but him not being convinced it was true! He felt some improvements were psychological and linked to the fact that people have invested in the treatment and believed it would work.

I wasn’t quite sure what he meant by that (intensive chemo, followed by stem cell transplant, having a placebo effect??) but decided not to discuss it further or tell him I am planning to have HSCT myself.

I felt he was a nice man and clearly believes that current drugs are good for his patients. It wasn’t until I was on my way home that I realised he didn’t ask me how I am, about new symptoms, or, in fact, my views or experience of anything at all!

So, that’s it, my hopes of accessing HSCT in the UK are now over. I am now one of those MSers who is diagnosed, shoved on drugs and seen once a year for a review (during which no one will actually ask how I am!).

I felt quite down about this last night but am ready to fight on today. Being an advocate for your own health is something we should all do, whatever our ailment. Knowledge is power. Find out what you need, find out how to get it and don’t give up 💪🏻

I now need to get back to fundraising (and possibly borrowing) with a vengeance. I think I’ll buy a lottery ticket for this weekend’s draw! 🤞🏻

On the plus side, the clinic in Moscow (as well as the one in Mexico) is infinitely more experienced in treating MS patients and has a much better safety record. I really will be in the hands of world experts and that feels good to me!

I also left the hospital armed with a bit of light reading!

GoFundMe

53 Thank you ❤️

I just wanted to write a quick update to say thank you for all the supportive messages I’ve received over the last couple of days. I really do have some wonderful people in my life xx

I must admit, I really didn’t feel like going anywhere Friday night, but once I had got myself ready and out, I was so glad I did. I work with a lovely team of 13 who are kind and supportive colleagues, but also great friends. We are very busy at work and in and out of the office at different times, so it can sometimes feel a little chaotic. It really was lovely to be able to sit and chat and enjoy the start of the festivities together.

I have included this photo as I think it is the first I have taken with my clumpy boots and walking stick. I would have avoided taking this a few months ago, but writing this blog has helped to see that it is much better to be open about things, rather than hide away.

A highlight of Friday evening is that, after over 30 days as a tee-totaller, Julie got to have her first alcoholic drink! She also got to try a porn star martini for the first time …I think she rather enjoyed it!

Thank you for doing this for my funds Julie xx

After my stressful day and night out on Friday, I was totally out of spoons on Saturday. I spent the day on the sofa, resting and recovering and felt much better today.

I managed to get out of the house with Niamh, Sophie and assorted dogs this afternoon and to give my trecking poles another outing. A bit of fresh air and exercise was just what I needed …thanks girls xx

I have also managed to do some research on the neurologist that I am seeing on Wednesday. Although I have spoken to one person who had a bad experience, I also heard from others who spoke highly of him and his knowledge of HSCT. So maybe the situation isn’t as bad as I thought after all. I’ll write more about that next time.

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52 Hospital blues

Today I had an appointment with my neurologist at Salford Royal Hospital. All my previous appointments have been at Stepping Hill, but last time I saw him, he suggested I see him at SRH, where he and his team are based.

So, last night I spent quite a bit of time preparing by making notes and gathering documents together, set my alarm for 6.30am and following a sleepless night, got up and ready and set off for the hospital.

I was a little early so had time to grab a coffee and admire the hospital building, before checking in for my appointment.

It was at this point that I was informed that there was no appointment and my neurologist is on holiday! I was told that I should have received a letter about this and it wasn’t possible to check if an alternative appointment has been allocated because her system couldn’t communicate with the neurology system!

I was upset/angry/disappointed by this, perhaps more so than I should have been and basically sat in the waiting room for quite a while, feeling helpless!

As mentioned before, Salford Royal is quite an impressive hospital, with a cafe and shops, so I indulge in a little retail therapy and another coffee, then set off for home.

I used to work in Salford and know of a sneaky back way on to the M60, missing out the M602 …what I didn’t know is that there are roadworks on my sneaky route, meaning my journey home took almost 2 hours! I think the radio station I was listening to must have known …

I was relieved to get home, then flabbergasted to find this on my doormat …

No mention of my appointment being cancelled, but notification of another appointment (with a different neurologist) next Wednesday!

I don’t know what to make of this?! The new neurologist is one I’ve never met, but know from others that he is not pro HSCT. I would really prefer not to see him. I have put in calls to my neurologist’s secretary and my MS Nurse and am waiting to hear back from them.

Why does all this matter? …Well, as you know, I am worried about the progression of my Multiple Sclerosis and would like to have HSCT as soon as possible to try and halt the disease and prevent further damage to my brain and spinal cord. I have been in touch with a clinic in Russia and am frantically trying to raise the funds to pay for treatment.

Fundraising is stressful and exhausting, at a time when my mental and emotional reserves are low and I also don’t relish the prospect of travelling for treatment, or more precisely, the journey home following such a gruelling procedure. If I could have HSCT in the UK on the NHS, much of my stress would be removed and I could focus my energies on staying well and taking care of myself. I’m find it really hard to keep going with all of this.

I know the chances of me getting treatment in this country are slim, but I wanted the chance to talk to my neurologist about it to see if he would consider referring me. I also hoped that, even if he felt unable to support my treatment in the UK, he might at least give me his blessing and be willing to monitor me when I get back from Russia. Now, I don’t seem to even have the chance to speak to him!

Anyway, I’m off out for my work Christmas do this evening, so will hopefully pull myself together, put my happy face on and have a good evening. I consider myself very lucky to have fabulous workmates, so hope to be feeling a bit brighter by the end of the night 🥂