MRI – Another MS Warrior

139 I’m back!

2022 hasn’t started quite as well as we were all hoping, with all our lives still being impacted by Covid 19, Brexit and worries about our financial futures. I am trying hard to muster every ounce of optimism I can find, but it’s not always easy.

I’ve been struggling to think straight for the last few months, let alone write, so my blogging has totally fallen by the wayside. During the last year, I have retired from work on medical grounds, worked my way through complicated pension paperwork and evidence, sold my house, been rescued by family and eventually moved to a rented ground floor apartment nearer to my children and friends. It has been a lot to process, but I think I’m finally reaching a point of acceptance and can now begin to look more clearly to the future.

My brand new park home has never materialised, so I have had to change my plans. I am in now the process of buying a lovely new apartment and will definitely feel much more secure once the solicitors have done their stuff and the place is finally mine. I won’t say any more on this for now, just in case I jinx it!

As always, my MS has been making itself known. I have had several falls in various situations and suffered lots of bruises. It really does hurt when you hit the ground when you’re this size!

I had an MRI scan in July, which did not find any new disease activity in my brain and spinal cord … this is the first time a scan has revealed this outcome. It’s a cause for cautious celebration, but sadly, it doesn’t mean that my disease is no longer progressing. Hopefully it means that the DMT (Disease Modifying Therapy) I’m taking (Tecfidera) is helping. I’m going to do a future blog post on MRI, progression without visible lesions and “smouldering MS”, so will talk about this more then.

I am still thinking about HSCT, but two years on, have much more doubt than I did previously. I’ll do a future blogpost on this at some point too and am mindful of the need to be transparent about funds raised as well.

In the meantime, I’m going to spend the next few months researching what I can do now, to help me to live my best life with MS and putting what I can in place. I have started a bit of a list and will add to it as I begin my exploration. I am also open to helpful suggestions if anyone has any.

LDN (Low Dose Naltrexone)

“Low-dose Naltrexone has been used off-label as a treatment for various types of cancers, HIV/AIDS, Parkinson’s disease, Alzheimer’s disease, amyotrophic lateral sclerosis (ALS), emphysema, as well as multiple sclerosis (MS) and other autoimmune diseases”. Low-Dose Naltrexone | National Multiple Sclerosis Society

Fampyra

“Fampyra is indicated for the improvement of walking in adult patients with multiple sclerosis with walking disability (EDSS 4-7)”. Fampyra

HRT (Hormone Replacement Therapy)

“A further observational study in 2016 looked at 95 post-menopausal women with MS, of whom 61 had used HRT. The use of HRT was associated with better physical quality of life. It is thought that female hormones may have a neuroprotective effect and this is why HRT may be useful”. MS Trust: Menopause

FES (Functional Electrical Stimulation)

“Functional electrical stimulation (FES) is a treatment that applies small electrical charges to a muscle that has become paralysed or weakened, due to damage in your brain or spinal cord”. Functional electrical stimulation (FES) | MS Trust

Red Light Therapy and Near Infrared Light Therapy / Infrared Sauna

“Infrared light can penetrate skin and affect structures lying underneath, and Lyons first thought of applying it to MS after talking to colleague Janis Eells, who had studied its retina-healing powers. Other researchers are exploring infrared treatments to help with diseases such as Parkinson’s and muscular dystrophy.” Red Light Therapy

Improving Gut Health

“The microbiomes of people living with multiple sclerosis (MS) are differentTrusted Source from those of people without MS. Based on this information, the hope is that new therapies can be developed to help people with MS”. Healthline: What’s the Latest on the Link Between MS and Your Gut?

Taopatch

“Taopatch is a patented wearable nanotechnology device that combines acupuncture with light therapy”. Taopatch

Hyperbaric Oxygen Therapy

“Hyperbaric oxygen therapy (HBO or HBOT, also called high dose oxygen therapy (HDOT)) involves breathing oxygen through a mask in a pressurised chamber, similar to a diving bell”. Hyperbaric oxygen therapy | MS Trust

Cannabidiol (CBD)

“One in five people with multiple sclerosis (MS) surveyed in 2014 told us they’d used cannabis to help with their symptoms. They said it can help with muscle spasms or stiffness (spasticity) and pain”. MS Society: Cannabis

Revitive

“EMS is a world renowned technology that works by delivering electrical pulses that activate nerves in the body, causing muscles to contract and then relax”. Revitive

Circle Rehabilitation

“At Circle Rehabilitation, we build bespoke private treatment and rehabilitation programmes for people with multiple sclerosis. Our aim is to build your independence as much as we can. Our rehabilitation programmes are medically-led – your care and rehabilitation is overseen by one of our specialist rehabilitation consultants and physicians”. Circle Rehabilitation: Multiple Sclerosis Treatment

The MS Gym

The MS Gym

Exercise

Diet

Car with automatic gearbox and other adaptations

I want to finish by wishing you all the very best for 2022. Once again, I have been very poor at staying in touch with the people I care about in recent months (years). Between lockdowns, my anxiety and increasing disability, I know I have neglected some people. Hopefully once I’ve moved and started to take better care of myself, I can begin to put that right ❤️🤞🏻

Take good care of yourselves everyone X❤️X

115 Planning for Russia

Planning for my trip to Russia for HSCT is well under way now, so I thought I’d share with you where I’m up to.

A visa is required for travel to Russia and the process for this is rather complicated. I am waiting for an official visa compliant invitation from the hospital and once this arrives, there is a long and detailed online form to compete, followed by a visit to the Russian Consulate in Manchester. Shortly after that, my passport will be returned, containing a 90 day single entry Russian visa. I am hoping to find time to book my flights in the next few days and will feel quite relieved once that’s all done.

Then it’s just preparing the house and things I will need on my return, sorting things out at work, finalising plans for my aftercare and packing my suitcase to do! I am already compiling lists. My mum was one for writing lists and I often think of her when I’m in list writing mode ❤️

As the time draws nearer, friends and family are naturally asking lots of questions about how long I will be away, what the treatment will involve and how I’m likely to be when I get home. I thought I would try to answer some of those questions here.

I will be in Russia for a total of 30 days from Monday 16th March until Wednesday 15th April. I plan to travel on my own, basically to keep costs down. I have spoken to many others who have travelled alone without difficulty and know how to plan for the journey home.

The first few days are taken up with pre treatment testing. This is to ensure there are no hidden medical conditions which could be impacted by HSCT. There is also an opportunity to have a full MRI scan of the brain and spinal cord in one of the higher strength Russian machines, which can show greater detail than the UK MRI machines. During this time, there is also a bit of down time, during which I’ll be able to go outside, mix with other patients and hopefully squeeze in a bit of sightseeing.

The exact protocol used varies from clinic to clinic, but at the Moscow hospital, the timeline is as follows …

Day 1 – 4 Examination and final decision on treatment.

Day 5 – 8 Stem cell mobilisation Drugs are used to stimulate the bone marrow to produce extra haematopoietic stem cells and release them into the blood. These stem cells can develop into the cells of the blood, bone marrow or immune system.

Day 8 – 9 Stem cell harvesting – An apherisis machine is used to extract stem cells from the blood. These are then frozen until needed.

Day 9 – 12 High dose immunosuppression (chemotherapy)

Day 13 Stem cell reinfusion

Day 14 – 27 Haematological and Immunological recovery – Isolation – the body builds a new immune system using the reinfused stem cells.

Day 29 – 30 MoAb-Rituximab and discharge

It is important to note that it isn’t the stem cells that treat the faulty immune system (the root cause of MS), but the chemotherapy that partly destroys the faulty immune system, allowing a new healthy one to grow. It is thought that a new immune system would eventually grow following chemotherapy, without the introduction of stem cells, but by providing the transplant, recovery is much quicker and the time a patient has a compromised immune system is significantly reduced.

Through the Facebook HSCT support groups and by reading numerous blogs, I have followed the journey of many patients travelling to Russia and through treatment. I feel I have a good and realistic idea of what to expect …and I believe I will cope and it will be worth it.

Isolation

The period in isolation is not as alarming as it first sounds. The reason for isolation is to reduce the risk of infection whilst the immune system is at its lowest. There are regular visits from medical staff and your developing immune system is monitored daily via blood tests. Once the medics are happy with your blood results, you can leave your room and mix with others again. I see the isolation phase as a time to rest and recover and allow the body to heal and repair. I will have access to TV, Netflix, Facebook, Whatsapp, my kindle, phone etc and will be able to keep in touch with family and friends (as well as updating this blog!). I’m not worried about coping with isolation.

Hair Loss

Yes, I will most likely lose my hair!

The chemotherapy used causes hair loss in virtually all patients and the use of cold caps is not recommended. I quite like my hair so was a bit bothered by this when I first read about HSCT, but I’m feeling fine about it now. Other patients have spoken of the liberation of baldness and I’m looking forward to seeing what it’s like! I can’t see myself bothering with a wig so will be spending some time researching funky scarves and head wraps over the next few weeks.

Once I am home, my GP has agreed to manage my aftercare. This will mainly involve monitoring my bloods to ensure my immune system is regrowing. When first home, I am likely to be tired and in need of peaceful rest. It is important to keep the house spotlessly clean, to eat carefully (to avoid infection) and to avoid contact with sick people. My amazing daughter has arranged to take some time off work to take care of me and I am so grateful for all her support.

Recovery varies enormously from person to person and is often described as a rollercoaster. The general advice is to eat a safe and healthy diet, slowly build exercise and movement, but most of all to have a positive mental attitude … or as Dr Federenko advises …

GoFundMe

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:

Diagnosis of MS made by a neurologist
Able to walk, needing at most bilateral assistance to walk 20m without resting
In relapsing MS (RMS), failed one licensed disease modifying drug of high efficacy (currently including alemtuzumab and natalizumab) because of demonstrated lack of efficacy
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.

72 TLAs (Three Letter Acronyms)

I work for the VST as a TLC alongside some ESWs. We work with LAC (or CLA) and we are always ready to provide a quick response to NIC. I have particular responsibility for EY LAC and we have regular contact with professionals from CSC, SEN and BSS. Acronyms are everywhere!

The world of MS has them too, although most are FLA! I thought I’d share a post about some of the acronyms and vocabulary used in MS.

MS – Multiple Sclerosis

CIS – Clinically Isolated Syndrome: A single attack (or “Sclerosis”). Many with MS are diagnosed with this following their first attack or relapse. For some reason, I was initially diagnosed with two episodes of CIS (which seems somewhat contradictory to the meaning of the word “isolated”!).

RRMS – Relapsing Remitting Multiple Sclerosis: MS which is characterised by attacks or relapses alternating with periods of stability. Some neurologists argue that! with MS, there really is no period of remission, therefore using the word “Remitting” is misleading. I am currently recorded as having RRMS.

RMS – Relapsing MS: Being used by some neurologists instead of RRMS

PPMS – Primary Progressive MS: a presentation of MS characterised by continuous progression, with no relapses or periods of remission. 10-15% of new diagnoses of MS are of PPMS.

SPMS – Secondary Progressive MS: around 50-80% of those initially diagnosed with RRMS will become secondary progressive at a later stage. I recently asked my neurologist if I was secondary progressive and he replied “well, you’re certainly on your way there”.

https://youtu.be/CgQfI0ZFvoo

MRI – Magnetic Resonance Imaging: used to view the health of the brain and spinal cord to aid diagnosis and monitor progression of MS.

DMT / DMD – Disease Modifying Therapy / Disease Modifying Drug (These terms seem to be used interchangeably so I assume they have the same meaning)

NEDA – No Evidence of Disease Activity (what we’re all aiming for!)

HSCT – Haematopoietic Stem Cell Transplant

AHSCT – Autologous Haematopoietic Stem Cell Transplant: an Autologous Transplant is one in which the recipient’s own tissues are returned to the body. Allogenic describes transplants where tissue is donated by another. Allogenic Stem Cell Transplant is considered far too risky as a treatment for MS.

CNS – Central Nervous System: the brain and spinal cord

CSF – Cerebral Spinal Fluid: This is the fluid that surrounds the brain and spinal cord. CSF is extracted during a lumbar puncture (or spinal tap) and can be tested and examined in a number of ways. Most people diagnosed with MS have “Oligoclonal Bands” present in the CSF at a higher level than in the blood. I had a lumbar puncture in 2017 which identified the presence of oligoclonal bands and confirmed my MS diagnosis.

PwMS – People with MS

NICE – National Institute for Health and Care Excellence

EBV – Epstein-Barr Virus: A common virus that causes glandular fever. I have included this as there is growing evidence that exposure to EBV may be a contributing factor to developing Ms for some.

EDSS – Expanded Disability scaled Score: Used to measure disability in MS. A recent neurologist letter records my EDSS as 6, however I feel it is nearer 5.

TTFN xx

GoFundMe

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 😘

12 Living in a small world

I’m trying very hard to stay upbeat, positive and optimistic through my diagnosis and search for the best treatment, but it hasn’t always been that way and to be honest, there’s the odd time when I still can’t manage it.

When I was first diagnosed (June 2017) I was in denial, kind of pretending it wasn’t happening, not really telling anyone and hiding my symptoms wherever possible. It took me a whole year to get my head around it, to accept it and to decide the best idea is to learn as much as I can and do whatever I can to fight back.

I have spent many years of my adult life as a single parent, putting all my energies into raising my children, giving them the best that I could. I gave up my teaching job for a few years when I realised working 60 hours a week wasn’t compatible with lone parenting. I prioritised my children, kept men at arms length and generally put other aspects of my life on hold. Don’t get me wrong – these were happy times and I didn’t feel I was making a huge sacrifice. I knew that this was just a stage in life and that before long my children would be grown up and independent and I’d have plenty of time to do things for myself. I thought maybe I’d travel, join a dating site, rent out my house and work abroad, do a photography course, get fit …

Unfortunately 7 years of strange symptoms and worrying MRIs have cramped my style a little! It’s hard to plan ahead and impossible to commit to anything too challenging when you’re not sure whether your body will be functioning properly.

In August 2016, I was having a really well phase and went on my first ever singles holiday. I had an amazing time. Unfortunately, shortly after my return home, I began my third and most severe MS relapse and haven’t had a symptom free day since then.

At the top of Nea Kameni volcano, Santorini (Aug 2016]

One of my biggest disappointments is a few years ago having to defer, then withdraw, from a Psychology of Education Masters course I had been offered a place on, when my health problems got in the way. I hope I get another chance some day.

Sometimes I am all too aware that I’m neglecting friends as my time, emotions and energy are limited and need to be rationed!

So, in many ways, my world has become smaller over recent years, rather than the expansion I was hoping for.

1 How did I get here?

My journey to diagnosis is a slightly unusual one. Most of those with MS are diagnosed in their twenties or thirties, so I don’t fit the most common profile. I am also informed (by my neurologist) that my MS presentation is unusual. Because of this, my early symptoms were attributed to my age, the menopause or my existing thyroid condition and it took 7 years to reach a diagnosis. One GP even suggested my symptoms were “all in your head”! During that time, I had several brain and spine MRI scans and eventually a lumbar puncture. To date I have 3 large spinal cord lesions and numerous white spots in my brain and my recent brain MRI scan showed ongoing disease activity. My neurologist has gone from “don’t worry, go and get on with your life, you may not have any further relapses” to “I think you’ll have another relapse and I think it will be soon”. All a bit scary! But it’s not all bad news … One of the positives about being diagnosed with a life changing illness is that it forces you to reevaluate your life and to work out what is important and what isn’t. Some of the minor day to day niggles of life now seem irrelevant. I am blessed with my wonderful children, fantastic family, fabulous friends, amazing work colleagues and a job I love. I know I am lucky.