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.

Symptom 2 - Part 4: A Night at the hospital and home-coming

During the rest of that night, in common with hospital stays everywhere, I think a different person was in my room every 30 minutes to check serum levels, blood pressure, bring dinner, clear away dinner...
By the time 11pm came around, I was tired enough to be almost asleep, at which point another nurse came in, woke me up and gave me a sleeping tablet...

I suppose everyone should know by now, you don't go to hospital to rest.
I think at 5.30 I was woken again for a blood pressure test, and then at 7.30 for breakfast.

Saturday continued like this with people in and out to tidy the room, make the bed, clean the floor, take away the breakfast things.
I don't understand why one person cannot do all these tasks, and get the entire faffing about finished in one visit, allowing the patients some privacy and time to rest. Actually, maybe that's part of the plan - prevent us from becoming too comfortable so we try to check ourselves out as soon as possible!

Anyway, by around 11am, I had seen my DR who was asking if, following the first course of the corticosteroids, had there been any improvement yet in the numbness (there hadn't been), and to let me know the second course was coming soon.

Symptom 2 - Part 3: Second trip to the Hospital

Friday, 2nd March,  2012.
Hmm, a new anniversary?
A New Menace...clearly, this blog could not possibly have been written by me unless there was at least one Star Wars reference.

I'd got my bag packed on Thursday night because I had been booked in for an overnight stay at the Ruber International Hospital.
T-Shirt, shorts (so no awful Hospital Gown needed), and a small wash-kit.
Survival gear (Laptop, DVDs and a couple of PC games, Kindle, plugs and chargers, mobile phone).
And...Joy of joys, the hospital had WiFi!!!

I arrive at the hospital and check myself in at reception and then again, complete the administration. This was a further €1000, and after this, I was shown up to my bedroom for the day/night. Co-incidentally, it was the same room I had been using the previous day.

Today was already planned out.

• Chest X-Rays
• Lumbar Puncture
• Course of Corticosteroids (to reduce inflammation in the areas of the lesions and hopefully reduce the numbness). This course would be over the course of the next three days; today, tomorrow and Sunday.

Symptom 2 - Part 2: First trip to the Hospital

Following on from Symptom 2 - Part 1 blog, I arrived at the Ruber International Hospital on Thursday 1st March. This appointment had been made the same day by my DR.

I went up to the Neurology unit and within about 15 minutes, I was talking with one of the consultant neurologists who also had another DR doing some on the job training.

The DR started asking questions about my current symptoms (the numbness being only one one side of my face, neck and by now, upper shoulder.
He asked if it was also affecting my left ear - it wasn't, and then asked about any other hospital trips or symptoms.
Not being sure if it was related or not, I told him about the shadow in my peripheral vision that had already cleared up some 6 months earlier.
I could see he was zeroing in on a theory, but still I had to take my shirt off and cough whilst he listened to my chest and my breathing.

After a while, he excused himself and he and the trainee went out to consult amongst themselves.

Symptom 2 - Part 1: And I go to see a DR

About 6 weeks after the original symptom (First Post in this blog) had started, it disappeared by itself. One morning, probably again on the train to or from work, I realised that the shadow had disappeared \o/ Joy.
Although to be honest, it hadn't really bothered me too much, and I had received feedback from the Ophthalmologist telling me that there was probably nothing to worrry about.

Symptom Two - Part 1.

About six months later (late February 2012, just after my 42nd birthday), I woke up one morning with a strange numb sensation inside my mouth. When I breathed in through my mouth, it felt like I had recently used a strong mint/menthol toothpaste - slightly cool feeling and not quite numb, but not as normally sensitive to touch.

At the same time, or a few days before, I'd had a bit of a head-cold - lots of vigorous tissue filling and nose-blowing. I pretty much thought I'd got very mildly catarrhal and that the blockage was slightly impacting on a nerve (pre-neuralgic pains).

I thought nothing else of it for a couple of days until I realised that the numbness feeling was spreading. I think on a Wednesday morning when I woke up, I realised that the entire left side of my face, left nostril (inside) and left side of my neck, had the same numb feeling. I could still feel touch, but the sensitivity had been diminished. My wife by now, was angry with me for not having got a Dr's appointment booked.

Where to start, where to go

A strange thing happened to me on the way to...

I  guess, like most people who have been diagnosed with Multiple Sclerosis (I mean those who write a blog), they end up recording some thoughts.

Or wanting to capture how they felt at the time they found out, or how they feel now, or...

Anyway, this means of course that the blog takes on a sort of 'diary' aspect and so here I have to remember, from a month ago, what happened.
Actually, I think everything started about 7 months ago so let's start there.

Once upon a time.