Super quick update (of nothing)

Just in case you ever find this blog and start reading and then (at the last posts, start wondering how it worked out)...
Everything's fine.


I still take Vitamin D3 - I've moved away from the 50,000 in a single capsule, and now take a 10k capsule that contains oil. I do this 5 days/week and also take a little calcium. Holland & Barretts have a pleasant tasting fruit/veg flavoured calcium pastel.


Still take a little less red meat than i used to and of course, still completely avoiding dairy.


There are loads of options now for a cheese fix (although i don't actually miss cheese any more, there are some acceptable alternatices that mean a quality ham and cheese sandwich is available).
Other companies (like alpro) have lots of alt-milk (nut based and soya based) and yoghurt ranges available, and there are more desserts than ever.


I am reading into a book called The China Study which ultimately, advocates a whole-plant food diest, but i haven't taken thart particular plung just yet.


So here we are - pretty much exactly 5 years since the original diagnosis. Other than registering with my local MS NHS group (and being told I no longer need to come in), i've had nothing to report since 2012.
No new attacks (that I'm aware of). Stable weight. Enjoying life and almost never think about the disease at all, except when i remember why I request non-dairy food.


I poop my tablets automatically and basically, no longer think of them as being related to anything other than me taking supplements.


Good luck!

One year later.

Well, here it is, the one year anniversary diagnosis. Ava will be one year old in just a few days and I feel great - hopeful for the future, not just her, Mitra's, Ava's and Kian's, but mine also.

In the year that's passed, we've moved from Spain to the U.K., where we rented a house for 6 months and then finally moved into our new home.

There hasn't been anything to report since the last scan I had in Madrid, at least not as far as the M.S. goes, anyway. Six weeks after we'd moved back to the U.K, we had all registered with our local DRs surgery. Whilst there, I asked about the referrals system in the U.K. and was told that I'd be put on the register and an appointment would be made.

When I finally got the appointment letter, it was for the 25th February, nearly 5 months after I'd seen my local DR and requested the initial referral.

I drove through for the appointment and, expecting a long wait, I went ready with my kindle. I was checked in to the hospital around 10 minutes before the appointment and I'd sat down only for a couple of minutes and I was then called through.

After the by now, regularish type exam where my reflexes, balance, hand-eye coordination were tested and finally, sensitivity, where the bottom of my feet were scratched (here's a tip for you, clean feet and non-fluffy socks), I started to recount the history that had brought me to this day.
This is I think, about the 10th time between the different DRs, hospitals, services and it's amazing how blase you get to be about it all, whether it's down to the repeated tellings, the coming to terms with it or something else.

Actually, because I've had no other symptoms, and because all I'm doing a a mild change to the diet and supplementing with some vitamins (previous posts), it's almost too easy to relax overly much. A couple of days of not taking any pills here or there, the odd 'taste' of some fatty foods and a bit of being a touch blase
about it, made me wonder if I was perhaps being a little too relaxed.

I've not gone wild - you know, and had cheese or anything, but I have eaten a little red meat (some minced beef in a bolognaise) and a few bits of ham.
Devil. 

The diet I follow recommends cutting out all red meat but not because it is particularly bad for you, rather that it is very difficult to modulate how much saturated fat is being taken in. I am still being fairly cautious though and occasionally have a carb free day also. My weight has re-stabilised at around 80kg too.
When we came back over, my weight picked up a bit from the 80kg to 82.5kg. This is probably because I wasn't walking quite as much although in Madrid, I was having a three course meal every lunchtime.

It's easy to draw comparisons between the provision of services (MRIs and Lumbar Punctures) within the private healthcare system (which I was part of in Spain), and the NHS state provision in the U.K. In the U.K., the approach is a little different of course, and the in the main, rely more on treating when more obvious symptoms arise.

As the DR I saw in the Queen Alexandra's Unit in Portsmouth said, "We don't prescribe medication unless there have been at least two debilitating episodes in the past 12 months."

In Spain, they'd suggested that any two episodes within 12 months would be "on the cusp" of qualifying for prescription medicines and additionally, under the private health system, follow-up MRI's were prescribed every six months.
Also, in Spain, I'd never had to wait for anything more than a week (apart from occasional mix-ups between appointment) and so booking an initial referral that would only take place five months later, for something that's listed as a chronic disease, was quite the eye-opener.

Well, I'm here now - better make the most of it.

I met someone else at work who's also been diagnosed with MS (11 years ago). She said to me that I must remain positive about being an MS sufferer.

I only half-agreed as I feel that I remain positive in order to not become a sufferer at all.

Anyway, feeling fit, looking pretty good for it too and assuming no change between now and my next appointment, this blog will probably be going dark for a year.

All the best to you all,

Geoff.

Follow up to latest MRIs

Almost like the proverbial buses, you wait ages for a blog and then two come along in short order.

Now that the ringing in my ears has finally faded away after the follow-up MRIs, it's time to write about the subsequent analysis with the latest neurologist to see me, this time at the Rosario Hospital (or to give it its real name, Hospital Nuestra Señora del Rosario).

When I was booked in at the same hospital to have the MRIs done, I was also booked in for an appointment with Dra Herrera who is meant to be Sanitas' number 1 DR for MS.

The new MRIs were also to include a different type of MRI, this one was a type of scan to determine if my MS symptoms (remember that MS is ordinarily diagnosed by exclusion, various different symptoms and test results combine to give the most probable cause) were caused because of a venal blockage in the veins draining the central nervous system.

Five months later...

Wow - where did the last five months go!

Time for a progress report and a minor rant aimed at Sanitas, my private health-care provider here in Madrid .

First the good news - almost no change at all - the diet part continues to work for me, and now I'm about 7kg lighter than where I was at the start of March - the summer jeans I was wearing seem a little tight in the various curvy bits I've still got left, although I realised today that they are a 32R, meaning I have finally dropped a 2" waistband size (girly shriek of joy).

Even though I'd cut out as much saturated fats as possible and all milk-based dairy (I still eat eggs), I'm not actually feeling like I am missing out on anything - I'm eating more seafood and using soy milk/yoghurt with my breakfast and almost never experience any cravings for Chocolates, Ice-creams, Pizza's, Pasta foods with bechamel or cheese...Lemon-Meringue pie (actually, I CAN have that, as long as the base has no butter or margarine in it).

Mitra, my wife has been experimenting with baking with olive oil and we've had variations on carrot cakes and lemon sponges and so on, which have all been great too.

So, no further symptoms in 5 months, feeling great, have at least as much energy as I did years ago (handy for chasing our toddler son Kian around and will be useful for when our baby daughter Ava becomes more active too).

Is this the bit where I say I am vigorously touching wood...I mean, I know how that might sound to the immature amongst us...

Moving on then.

Quiet News weeks

Approaching now 3 weeks since my last confession blog post, I was confident that there would be plenty to write about.

Oh - I suppose I've given away the purpose of it after all, in that there isn't a lot to write about that's changed since the end of April.

My wife is happy about this. Not because she was concerned I was taking too much time with the blog, but rather that the "no news is good news" means that nothing sinister has happened (crosses fingers, touches wood, dodges black cats and inclined ladders).

All previous symptoms have gone completely (ok, the numbness...) and I continue to lose weight. I've now lost around 6kg (actually, about 6.5kg but I seem to maintain a 'floating variance' of about .5 kg) and have started using some weird vibrating dumb-bell style weight gadget. It says only 6 minutes a day are needed to achieve the same results as lifting a bison several times a minute.

Playing Catch-up

Up to now, this blog writing has been a bit of a breeze - mainly because I've been writing from memory of the major events that got me here, whereas soon, I'll have to decide if the blog simply becomes a record of how I feel, or what I've learnt on a daily or weekly basis. I'll probably keep on adding links to other people's pages and latest research as that way, I can stand tall on the shoulders of giants.

Anyway, it's clear by now (thanks wife...) that I've already muddled some of the time-order - I thought it was within about 1-2 days after I got home that I'd had the brainwave about foodstuffs, etc.

It turns out it was 6 days later, and only after my wife had already found a couple of interesting links...one of which I savaged somewhat a couple of blog posts ago.

Additionally, I've completely missed going back to the hospital for the final course of corticosteroids, the subsequent check for tuberculosis reagent and...

Feelings, nothing more than...

A slight change in blog direction for this post.

I had been talking a lot recently about various websites and approaches as regards drugs and diet therapy.
This post will be a little more about feelings...and for a man, isn't this supposed to represent a more fearsome approach than the slings and arrows of outrageous misfortune?

Let's see!

Some of you might know that my father died of cancer a number of years ago. It started out as bowel cancer and spread. From which point, for a few years, I was checking what I'd left behind in the toilet bowl and on the toilet paper in case there were any tell-tale signs.

It almost goes without saying (and indeed, you might wish I'd kept it that way...) that one day I spotted some blood on the toilet tissue.
Logically speaking, the colour (bright pink/red) wouldn't suggest anything cancerous at all, but when you've got into a bit of a cycle about these things (checking for symptoms), it's all too easy to force 'evidence' to fit a diagnosis.

Anyway, long story short, I got checked out and was told I had hemorrhoids. Which of course was a blessing, although the digital probing and air inflation of my lower intestical tract is a sensation I think I shall remember for the rest of my life.

A Researcher in Waiting - Part 2

It would appear in the blur of the first few days following diagnosis, that I have mixed some dates up and also forgotten that it was my wife who got me on the path of looking at foodstuffs.
About 6 days after the diagnosis, Mitra sent me the following link:
http://www.mscures.com/foods-to-eat.shtml.

I have since had another look at the site and, now that I compare 'some' of the advice given there, to the sites contained in my 'links' area, I remember now why I discounted it so quickly.
Apologies to the site owner - perhaps there are English translation errors also and of course, they need to make a living.

Negatives:
On the Causes page the author states:

Hands or feet cold or OFF color or a stinging sensation in hands and feet

Now here's me thinking this was simply due to a poor circulation or pins and needles.

Uncontrollable body jerks while sleeping

Ever seen a dog dream? Ever dreamt you were falling or playing football or..
For crying out loud - my mumbo-jumbo alerter was screaming at me.

JUST A FEW OF THE JOYFUL SYMPTOMS OF ANIMAL FAT AND HYDROGENATED OIL, raw egg (yellow part) IMPACTS!!!- U U U CAN CHANGE AND HEAL U FOREVER, IF U DECIDE 2!

Who writes like this? U U U?? If U decide 2?
Gnnngghhh - the dreaded txtspk.

A Researcher in Waiting - Part 1

Following on from the NICE and Easy post where I'd sort of found out that, according NICE, Interferon wasn't going to be offered in the UK, I felt that couldn't be the end of the matter and so I widened my search criteria for treatment plans.

Meanwhile, although I still had some mild side effects from the corticosteroids (and one more course to go), they were slowly but surely, helping to alleviate the facial numbness. So much so, that by the end of the 2nd day (the evening I had got back home), the outside of my nose felt relatively normal, and my left cheek felt strange only when I pressed or tried to move it with my hand.
Since I'd never suffered any type of palsy, I was reasonably happy so far with my progress.

I spent the evening chatting with my wife and sister (I should point out that my wife and my sister are NOT the same person - my sister was over to visit and offer support). I was coming more to terms with the MS diagnosis, but even then (as now, as I write this), I didn't feel that MS was going to be a deciding factor in my life if there was anything I could do about it.

Now, I don't mean I suddenly discovered some latent grim determination and fortitude...I just didn't feel that MS was the thing that would be defining my life. Well, apart from writing a blog and changing my diet and getting vitamin supplements and reading loads online and ordering books and...
I mean, apart from all that, what have the Romans ever done for us I wasn't really thinking about the MS at all. I was convinced I would end up doing a lot of different things because of it, but that it would just become an aspect of life and hopefully, easily ignored if treated right.

NICE and Easy.

So now - five posts down and...well, more to come - I think it's time for a quick recap.

Having had two symptoms (attacks or episodes) that indicated a neurological issue, and then following the results of an MRI, I was diagnosed as having MS.
This diagnosis around 2nd March 2012, took place approximately 7-8 months after the first attack.
Subsequently, I'd had discussion with the neurologists about drug treaments, but had been given a couple of weeks to think things over as the initial results from the lumbar puncture were not yet in.

The "glass half-full" news, was that my symptoms had been very mild and were sensory only. This mean I had not experienced any difficulties with movement nor spasticity. And since everything was so mild, and because I was already of a quite senior age (MS normally being diagnosed between the ages of 20-40), it meant based on normal life expectancy, I'm not likely to be any more inconvenienced by MS than I would be for normal advanced age in the future (this is by following average disease progression trends).

As mentioned, it's now the sixth post, the previous ones covering the original symptoms and stay in hospital, as well as the first two (out of three) doses of corticosteroids that work as anti-inflammatories.
They were starting to work and as a result, the swelling that had caused the lesion I had affecting the
trigeminal nerve (resulting in the facial numbness), was now easing. This meant I was re-gaining the sensory sensitivity and the numbness I'd experienced was slowly fading away.
Some side effects of the corticosteroids, and ones I hadn't been warned of, were palpitations and also facial redness.
This came as a mild surprise when I came home and about an hour later, face beetroot red and a hot flush later, I thought I might be having a heart attack.
So, instead of settling down, I ended up researching the role of these drugs on subsequent side effects.
The same (ok, I can say mild now) mild symptoms happened a few times over that Saturday and the following 2-3 days and are quite common.
I was now back home after a day and night in the hospital - time to take stock and do a power of reading and research.