My Covid Jap Update - An Overdue Post!

 I actually recorded this ages ago but forgot to post it. Hey ho! had both jabs some time back for Covid - Astra Zeneca - but had quite an adverse reaction overnight to the second jab. Didn't last much beyond lunchtime, but worth reporting.

1.5-Year Update!

 Here, finally, is a one-and-a-half-year update after having had HSCT. Check it out!

Willing to Help and Advise, and "Coming back in a Wooden Box"...

I hope they don't mind me saying, but I was contacted recently by someone through Facebook Messenger out of the blue. Her brother-in-law had recently been diagnosed with primary progressive multiple sclerosis and appeared to be in a bit of a spiral downwards in terms of not quite knowing what to do with the oftentimes damning diagnosis. There is no doubt that a diagnosis of PPMS can leave one feeling a little helpless and hopeless. The treatment options really are few and far between…

This brother-in-law was in his 50s, and on the EDSS scale a few points above me. He and his wife were keen to meet me, especially as they lived locally and had read some of my blogs and seen some of my videos, to talk about the option of going to Russia for HSCT.

6-Month MRI Results from Russia!

I have finally been back to Moscow to get my follow-up MRI done and to get the results. I will talk about the results in more detail in a future post. Here is the GoFundMe page update that I gave:

As you all know, I have PPMS (Primary Progressive Multiple Sclerosis), had stem cell treatment (HSCT) six months ago in Russia (Moscow), and have returned for my follow-up MRI scan. Which I had today, and met with the doctor on the same day to discuss the results.

Oat Milk from the Local Shop

For those of you, like me, who have gone vegan, in an attempt to tackle their MS, you might want to know that the local shop to the clinic sells a couple of boat milks. Given the massive range of cartons of milk that they have on sale there, and given the language difficulties, trying to work out which one is non-this dairy can be quite a challenge!

Getting My MRI in Moscow

I am presently in Moscow, where I have just had my MRI to check whether the HSCT treatment has worked or not. Of course, I could have got to my MRI done in the UK. But, as some readers might recall, there was quite a significant difference between the MRI scanner in Winchester, back in the UK, and the one that they used prior to my treatment in Moscow. When I had my last MRI done in the UK, I think sometime in February, it registered three lesions on my brain and spinal cord. However, when I had my MRI scan prior to my treatment in March, in Moscow, they found eleven lesions. This seems to be because the machine in Moscow is a 3 Tesla machine whilst the one back at home was a 1.5T machine. Being twice the resolution in Moscow, the machine found more lesions on my brain and spinal cord. As a result, it would be rather silly of me not to get a like-for-like comparison by using the same machine to compare my before and after results.

MS Research - Getting in the News - I'll Give It a Try

Multiple sclerosis recently got on the national news – the BBC's 6 o'clock News. Caroline Wyatt, who has long suffered from multiple sclerosis, has been a BBC correspondent for some time. She contracted multiple sclerosis and struggled to be able to fulfil her job requirements. Recently, she undertook HSCT in Mexico. However, she had had multiple sclerosis since 1992. Whether it be as a result of suffering from the condition for so long, or some other variable, and although the treatment initially worked, she eventually returned to her previous state. That said, her brain fog is still much better than it was previously. Ostensibly, though, Wyatt has been a failed responder.

A Phased Return to Work - Pros and Cons

I have been at work for what must be three and a bit weeks, now. Work have been very supportive in allowing me a phased return, which means that I have only just worked myself up to my full hours. I am a teacher who works four days a week, Monday to Thursday. There is absolutely no doubt that I have found going back to work particularly difficult. I had been out of work since March, and what with the summer holidays, this meant going back to work at the beginning of September, some almost 6 months later. This was certainly a shock to the system.

Back to School! 4.5 Month Update

Sorry, it's been a long time. It's been something like 4 1/2 months since I returned from Russia, possibly more now as this has sat in my text editor for a week... I've had a really good recovery so far, although summer has offered its challenges with some pretty high temperatures here and there. Over the last couple of weeks, I have been getting a little anxious as going back to work for the new academic year has loomed on the horizon ever closer. Well, that horizon has finally arrived! I have been at work for a day and a half last week and all the mornings this week as I am currently undergoing a phased return whereby I slowly work up to my normal hours. 

Fatigue Management

Fatigue is a massive challenge for anyone with MS. The statistics for the number of people with MS who suffer with fatigue are very much understated, in my opinion. I'm yet to find an MS sufferer who doesn't suffer with fatigue. 

3.5 Month Update

I'm sorry that this has taken so long but I am on summer holidays at the moment, as a teacher, and this means I've been somewhat distracted! I have now been back a number of months and this is my video update that I did a couple of weeks ago. I'm thinking about running a video series on tips for fatigue as I have recently undertaken a six-week MS fatigue management course run by my local NHS MS team.

Update: A setback? Or summer heat?

I thought I would furnish you with another update. It is now the end of June and I returned from Moscow on 10th April. In this time, I have seen remarkable recovery. I believe that my walking and general coordination, as well as my strength, have returned to levels that were better than they were before I had treatment. My recovery has been as good as can have been expected.

2-Month Update

It seems to have been ages since I last did an update. It's now been two months since I have returned from Moscow and my HSCT treatment. Things are going really well and I am recovering along the same trajectory as I was when I last gave an update. I believe I am physically better than I was before I left for my treatment, which is absolutely fantastic. I am cognitively about the same. All things said, I can only take heart from the level of my recovery. My hair looks like it is white or very fair... Here is a video discussing everything:

Third Blood Test Results - Week 5-6

Here are the results to my third blood test. These are a little bit late as I had the test done at the beginning of last week. They came in at about the 5 1/2 to 6 week mark. Broadly speaking, I was happy with the results, although also I felt I could have made a little more progress perhaps. My platelets seem to have gone into abnormal again. All my liver and kidney functions appear to be on point and the only abnormal stats were in my full blood count.

Here is the video that details the results. Let me know what you think in the comments below.

Interview about HSCT on Naked Diner Podcast

Here is an interview I gave the other week for the Naked Diner podcast. It is the third time I have been on, and each time has been great - massive thanks to them.

Excuse the opening expletives - I didn't realise I was on air at that time! And the false finish at the end! Here it is:

White Hair

It's white! White, I  tell you! It's odd and it's probably quite normal - I need to look into it. My hair is slowly growing back, but I think it is doing so in places I didn't properly lose it. My theory is that I lost hair in patches on my face and quite consistently across my head, but I didn't fully lose much of it. Where I shaved my face and had my head shaved, and where I didn't lose the hair, it just stopped growing. Where I lost it, I think it is still absent in the follicles.

One Month+ Update

It's just over a month since I came back from my HSCT treatment for my primary progressive multiple sclerosis, in Moscow. As many of you will know, my treatment went absolutely fantastically, and my recovery has continued that trajectory. I feel really good about everything and I feel really good in and of myself. This, of course, can lead to complacency and can be dangerous giving that my body and immune system may not be ready for normality. 

But I feel normal. 

A Book for You...

This is a nudge to you guys for birthday presents for any kids up to, say, 14/15 for you. You know you want to...

A book that I have written with one of my ex-colleagues called The Curse of the Maya: A Truth-Seekers' Story is now published and available to buy. It was something that I finished, as a project, when I was receiving my treatment in Moscow. It gave me time to finalize some of the details and editing before getting it out.

Details from the Loom site are:

Johnny Pearce and Andy Loneragan are embarking on a project for 9-year-olds through to 13-year-olds or so. In UK terms, this is Year 5 through to Year 7 and beyond. Heck, even adults should enjoy this one. The book fits in within the loose remit of Loom in being fiction from a skeptical or philosophical perspective.

Let’s set the scene of the book.

Finally! NICE Accepts Drug for PPMS

It has long been the case that people with primary progressive multiple sclerosis are the Forgotten relatives of people with relapsing-remitting multiple sclerosis. In the UK, on the NHS, we have no drugs available to sufferers of PPMS governing body (called NICE) last year refused to pay for the drug, ocrelizumab. After negotiations between NHS England and Roche, which manufactures it under the name Ocrevus, the NHS finally bartered the price down to an acceptable level and have just accepted it for PPMS sufferers.

100% Correlation of Glandular Fever/Kissing Disease to MS

It has long been known that glandular fever or the kissing disease, more medically known as Epstein-Barr Virus (EBV), has something very important to do with the development of multiple sclerosis. My MS nurse was recently telling me that an awful lot of effort and money has been put into researching this link. It seems that 100% of people who have had glandular fever (EBV) have developed multiple sclerosis. Obviously, this is only a tiny proportion of people who have contracted glandular fever, but the finding is exceptionally important. What this essentially means is that if we can develop a vaccine for glandular fever, then we can effectively wipe out multiple sclerosis. This is great news! Here is a video that lays out some details:

I'm not sure what the study is referred to here, or who the research it is being interviewed, but I have found a very recent (2019) piece of research that shows that 100% of Cypriot MS sufferers investigated had had EBV: