Saturday, May 25, 2019

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:

Wednesday, May 22, 2019

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.

Monday, May 20, 2019

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. 

Thursday, May 16, 2019

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.

Friday, May 10, 2019

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.

Wednesday, May 8, 2019

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:

Tuesday, May 7, 2019

Out & About Video

Here is the video to accompany my previous post about getting out and about. Hopefully, it is useful to you. If you have any comments or questions, please put them below in the comments section!



Getting Out and About

I suppose it must be coming up to a month since I have returned from Russia. Things are going really well, although some of my recent stats are a little bit up and down. Generally, I feel good about my recovery and very good about my treatment in Russia. It can be easy to get a little complacent and take things for granted. I know that I'm probably taking risks that perhaps I shouldn't do because I feel quite normal in some of my characteristics, both physical and cognitive. (Some of my characteristics are obviously very much still in the realm of multiple sclerosis!).

Sunday, May 5, 2019

My Second Blood/Liver/Kidney Tests

Here are the second blood results I have had from blood taken at the beginning of last week (Monday - it's Sunday now). There are some interesting changes that I will talk briefly about.

Wednesday, May 1, 2019

Discussing My Liver & Kidney Results, & My GP Appointment

Having already shown you my results in the previous post, I thought I would do a video talking about it as well. As I keep saying, I'm really looking forward to comparing my results from the second blood test that I had comma taken yesterday.

It's interesting to note that the only place I am wearing my face masks at the moment is when I go to the doctor's surgery. I'm going to my local convenience store without wearing them (I walk there as it is probably a 6 minute walk and that is part of my exercise regime in walking there and back). I am hopefully going to watch my twin boys play football this weekend where I'll stand with the parents and watch the game without a mask. I think this is a sign of the progress in my recovery as my immunity appears to be only marginally below where it should be. I guess we'll see for sure on my second blood test results.

Anyway, here's the video:


My Blood Results AND My Liver/Kidney Function Results

I told you in previous posts that, when I had my blood tests done, they only tested for my haematology. Because I could only find, on my medical records published online, my blood results and not my liver and kidney function results, I thought that they hadn't tested for them. I sent an email through to my GP and spoke as well to my MS nurse to request that these tests were done. I met with my GP on Monday this week and he told me that the tests had been done but they just hadn't been uploaded online. Well, they are there now. So here are all of my results for you to check out. I will talk about them a little bit at the end.

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 a...