neurology – Another MS Warrior

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

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 🥂

26 The long road to HSCT

As you all know, I am determined to get HSCT for my Multiple Sclerosis. There is a lot going on in the background to try to get to that point, so I thought I’d update you on where I am up to …

My first choice would be to have treatment in the UK on the NHS, but it’s a huge challenge to even be considered for treatment here. I have started by writing to my neurologist to see whether he would be willing to refer me to the Haematology department and Manchester Royal Infirmary as a I know that a handful of MS patients have already been treated there.

I haven’t had a reply from him, but I have had notification that my November appointment has been rearranged and a double appointment allocated. It’s really difficult to know what to make of this – perhaps he is considering referring me and needs a double appointment to discuss it all? Or perhaps he is worried that I am considering going abroad and has arranged a double appointment to try to talk me out of it??!

Even if this referral was successful, the next stage is for a panel at the MRI to consider my case. The criteria for treatment are shrouded in secrecy, so I have no idea if I have any chance at all!

If this route doesn’t get me there, my next option is to try to get referred to the London panel. To do this, I would need to convince my GP to refer me to a London neurologist for a second opinion on my MS.

From the beginning I have been told that my MS has “unusual presentation”, so I would try to be referred to a neurologist I am aware of, who has a particular interest in patients with unusual presentation …he also has an interest in HSCT.

Both of these routes have a very small chance of success in terms of me accessing treatment. UK neurologists are on the whole, not particularly supportive of HSCT at the moment. I really think this will change in the future but we haven’t got there yet.

Which then brings me to the other option …clinics abroad. There are a number of countries where HSCT is available at high cost and in some cases, only for residents of that particular country. There are also several unscrupulous facilities offering “stem cell therapy” which does not include all the stages of HSCT, so is therefore ineffective.

There are two clinics recommended by UK support groups – one in Mexico and one in Russia. I have spent a lot of time researching the treatment at both, talking to previous patients and having discussions with my family and have come to the conclusion that the clinic in Russia is right for me.

If you haven’t done the research I have, it perhaps sounds a little crazy to be planning to go to Russia for such life changing treatment …but it really isn’t! They have many years of experience of treating MS patients, a high success rate and an excellent safety record.

For a while I planned to exhaust all UK options before starting plans for going abroad, but each option presents a long journey and I’m worried about deteriorating while I wait for all these processes to run their course.

So, here I am pursuing both options at the same time.

GoFundMe

13 Chasing stem cells

Pharmaceutical companies,

I thought it would be a good idea to document my efforts to access HSCT (or “stem cell transplant”) …

I am a member of an online group that supports MS-ers to access HSCT both in the UK and abroad. Through the group I heard of a haematologist in Liverpool who has treated a handful of MS patients. I managed to track him down and get in touch with his secretary, persuaded my GP to refer me and was allocated an appointment in August. I was in contact with a few other MS patients who were exploring this route and we were sharing information and ideas and generally providing moral support. We were all super excited to be taking out first steps towards beating MS.

Then, one day in July, we all received the bad news that Liverpool was not going to be taking on any new MS patients and our appointments were cancelled. This was devastating news – I really had thought that this was my best hope of getting HSCT in the UK.

Knowing that the Liverpool haematologist had initially started treating MS patients within existing budgets, I began to wonder if there were other haematologists who might also be doing this, or who might be willing to consider it. I decided to write to the head of haematology at my nearest large hospital and was surprised and delighted to receive a phone call from one their team a couple of weeks later.

He explained that they had already provided HSCT for a few MS patients who had been referred by the neurology team at the hospital where I see my neurologist! He told me that if my neurologist would refer me, they have a panel of haematologists and other experts, who would then decide whether I am likely to benefit from HSCT.

I don’t have another appointment until November, so have written a long and impassioned letter to my neurologist , asking for a referral and explaining why I think HSCT is right for me – I haven’t heard anything back from him yet.

Anyone reading this is likely to think this is beginning to sound quite hopeful. I’m trying to have faith that this will work out for me, but unfortunately I am aware that the neurology team I see are generally not very pro-HSCT. In fact this seems to be the view of many neurologist up and down the country and in other countries too. I’m still trying to fathom out the reasons behind this.

The drug companies make huge amounts of money from MS patients. DMT treatments cost £8 – 20,000 per year per patient. It is not in the interests of the drug companies for large numbers of MS patients to halt their disease with HSCT and no longer require these drugs. There is a relationship, which I don’t quite understand, between the drug companies and the medical profession, with each supporting the other and perpetuating the status quo. In addition, many MS patient advice charities receive funding from the same drug companies. The result of all this, is a culture of belief that drugs are the answer – most research is on more drugs, new drugs, better drugs, rather than looking at other means of tackling the disease.

Another possible issue is that HSCT, as a treatment for MS, was discovered by haematologists rather than neurologists. In fact, the positive impact of HSCT on MS was discovered by accident, when an MS patient had the the treatment for cancer and found that his MS was also put in remission.

Either way, this is the battle MS patients seeking HSCT currently face. If HSCT for MS was widely available, there are potentially massive savings for the NHS and for society. HSCT costs the NHS £30,000 per patient – the cost of just 3 years of the DMT I am about to start. Imagine this many times over and you can see the huge savings that could be made. This is before taking into account the additional medication that many MSers need and other costs such as physiotherapy, mobility aids and benefits when people are unable to work.

Some patients have been able to access HSCT privately in the UK at a cost of around £80,000, with many more now choosing to travel abroad for treatment costing £40-£60,000.

So this is the dilemma in which I now find myself! It could take months for me to reach a conclusion with my neurologist and the final answer is most likely to be no. Do I hang on for this before considering other options? This is a tough one. One thing MS patients don’t have is time. The disease is progressive and I have already had my worst decline since onset, over the last 12 months. If things continue at the same rate, I dread to think how I will be in another 12 months. HSCT halts progression of the disease, so it is important to have it as early as possible, before more permanent damage is caused to the central nervous system …”time is brain” as they say in the HSCT world! I have spoken online to many people who have had HSCT and no one ever regrets having it, the only regret expressed is not having it sooner.

I don’t have the funds to immediately set off and have HSCT abroad, but I have had lots of discussions with various people about whether we could raise this amount of money. Indeed, many MSers from the U.K. have already done so.

I am touched and delighted that my wonderful family and friends are totally behind me and willing to do what they can to help. I first talked about this with my children a couple of months ago and their reaction was immediately one of support and optimism …they are already coming up with some amazing fundraising ideas!

So, we will soon be launching my fundraising campaign and trying to raise the money for my treatment abroad. In the unlikely event I later find my neurologist will support my treatment locally, I will give all funds raised to AIMS, a new charity formed by MS HSCT patients to support others seeking treatment.

If anyone has any fundraising ideas, advice or experience, please get in touch.

Thanks once again for all your support.

11 More about stem cells …

As mentioned in a previous post, I have spent the last few months researching HSCT (stem cell transplant) to find out more about what is involved and to see whether it might be a good option for me …I have come to the conclusion that it is!

I have also been finding out more about other treatments for MS, so that I can make a reasonable comparison. There are several treatments (Disease Modifying Therapies, DMTs) available – non of them cure MS – they have varying degrees of effectiveness in reducing the number and severity of relapses and for some have no impact at all. All DMTs bring potential side effects and short and long term health risks.

Side effects include stomach upset, flu like symptoms, injection site issues, low mood and suicidal thoughts (as if having MS isn’t enough!). Side effects are common and patients often have to try several different drugs before finding the one that suits them best.

The mechanism by which most of these treatments work is unknown, however, all work to reduce the effectiveness of the immune system. This means that patients are at risk of repeated infections (stomach bugs, coughs and colds, fungal infections, urinary tract infections, cold sores etc etc). There is also an increased cancer risk and little is known about long term use, as the drugs are fairly new. In March 2018, one DMT was withdrawn after a serious risk to life was identified – it had been introduced just 2 years previously. One of the most powerful DMTs is known in some circles as “Liquid HIV” because of its devastating effect on the immune system.

So, how does HSCT compare.

Well, it’s true to say that HSCT is an invasive and challenging treatment. Chemotherapy is no walk in the park and there is a period of time when the immune system is so low, that there is serious risk, even from minor infections. Recovery from HSCT can be slow and difficult and patients must be prepared to work hard to regain fitness.

But, once fully recovered, there is no need for further treatment, no compromised immune system and, for many, no MS! HSCT is effective in halting the disease in 70-90% of patients …no DMT comes near this.

HSCT is not widely available on the NHS (yet) but there is hope amongst patients that change is coming. A major international trial has been taking place over recent years, including patients treated in Sheffield (referred to in the BBC link in an earlier post). HSCT for MS is currently available in two London hospitals and there are whispers that other hospitals are beginning to treat a small number of patients. The MS Society, MS Trust and other patient support groups are beginning to provide information on HSCT and the tide is slowly turning.

MS-UK has a useful write up about HSCT here.

UK hospitals are already very experienced in providing HSCT as it is almost the same treatment as used for leukaemia and other blood cancers. Haematology departments are able to use a percentage of their budgets to treat non cancer patients and this is how some MS patients are able to access it.

Now I’m working on finding out how I can access it too.

4 Saying YES to drugs

Treatment for MS is limited to a range of drugs known as “Disease Modifying Drugs”. None of these is able to cure MS, halt progression of the disease or repair existing damage. The aim is to reduce incidence and length of future relapse …”future proofing” as my MS nurse liked to call it.

When I was initially diagnosed (2017) my neurologist was of the opinion that my MS was becoming inactive and that I may not have any further relapses so I decided to decline DMDs at that time.

This year I am in a very different position so have agreed to try drug treatment. This has been a really difficult decision for me – I don’t like the idea of taking long term medication and I am very concerned about side effects and long term impact on the immune system and the body. In addition, most of the drugs I am being offered are described as just “moderately effective”. There are more powerful drugs available but these come with worse side effects and much higher long term risk, so I’m hoping to avoid them.

So, in a couple of weeks time, I will be starting Rebif.

I will have to self inject three times a week – I found this rather a daunting thought until I chatted with my friend Beth about it. Two of Beth’s children have Type 1 Diabetes and have been self injecting and regularly checking their bloods for some time. So, Molly and George, you may not have realised it but you have inspired me from afar! Thank you!

More information on Disease Modifying Drugs can be found here …

MSTrust

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.