Just when you think you know what is going on...

... The Opthamologist comes back and tells you your MRI's were apparently clear, they recommend a Evoked Potentials Test (already booked) and a follow-up with the Neurologist (already booked) but admit, frankly, they're stumped.

And they go and ask a more experienced colleague, who is also stumped.

"It could still be MS, sometimes it isn't clear from MRI scans... but we're going to have to discharge you, there actually aren't any more tests we can do, its down to Neurology now..."

I can also raise the number of consultants I've made say the following:

"I've never seen that before"

From one, to two!

I have to say, its days like that I am thankful for good friends. I spent an evening sat on the sofa of the Reverend Tez, who after discussing that MS was the immune system attacking the nerves, Logically pointed out that all I needed to do was get rid of my immune system and live in a giant, sterile hamster ball.

As I was near crying with laughter he looked straight at me and said;

"Well it sounded like a good idea in my head, although in reality, hill's could be a problem."

Yes, Because when you're living in an air-tight sterile hamster-ball, gentle inclines are likely to be your biggest concern.

So now I am going back to the hospital, to speak to them about todays flare-up caused by over-doing it.

Toodle Pip!

~ Cookie

Why "Toodle Pip"?

Why toodle pip?

Why name my blog with such an archaic throwback from the English language?

After all, this is the twenty-first century, age of Internet, mobile technology and a method of writing so complex that I have to call the person to find out what

 "CN U C NX SUN ABT CR8VE? LME NO 2MOZ, KKTHXBAI"

 is supposed to mean.

"Toodle Pip" is one of those terms that is very rarely used in modern culture.

It, along with the likes of 'Cheerio!' and "Chin-up pickle", herald from around the time of the great wars. A time of 'Stoicism' and 'Getting on with it'.

In fact a time from which the stereotype of 'Britishness' is drawn from.

I was discussing this with one of my best friends, (who I affectionately call "The Good Lady" ).

It is something we are both aware of, and caught ourselves doing, that when the 'Midden hits the fan' we tend to hark back to that secure, safe, stoic Britishness 

An outlook and belief that means that yes, you may go and have a little cry in the bathroom out of sight.

But then you will dry your eyes, stand up straight, and bloody-well get on with it!

I know 'The Good Lady' is having a bad time and in desperate need of a cup of tea and a listening ear when "Cheerio" and an almost forceful 'brightness' enters her tone of voice.

Likewise she understands that when I am worried, 'Toodle Pip' will enter my vocabulary, along with the habit of speaking with the forthright certainty of a 1940's General.

 "Well Sod it then. You know me old Girl, I'll just buckle down and get on with it, Not beaten yet! Toodle Pip!

So essentially this blog is named for the attitude and determination to make the most of the hand that life has dealt me.

It is not pleasant, it is not something I would wish for, but moping in a corner isn't going to help any bugger.

If I were to name it with a modern twist it would likely end up as "F**k it"

In the scheme of things, I prefer 'Toodle Pip'.

- Cookie

The beginnings of Toodle Pip.

First Blog post. Tradition states, I should explain why on earth I'm Blogging at all.

"Blogging: Never before have so many, had so much to say, about so little, to so few."

My name is Cookie, I am 27, and I am about to be diagnosed with MS (Cue legal argument regarding why this may not be entirely accurate but we believe it to be at this time blah blahblahblah)

I've had symptoms for just over a decade now, Which I put down to a variety of other causes, excuses, convinced myself I was making a fuss, imagining it, etc.

Following an attack? relapse? general jumble of symptoms? in the last week or two, I was forced to admit to myself this wasn't just 'over-doing it'. When my eyesight in my right eye went from 'fine' to 'extremely blurred and washed out colour' I went to my opticians, who after checking there was nothing wrong with the eye itself, sent me to the Hospital.

The hospital confirmed there was nothing wrong with the eye itself, and referred me for an MRI within the next month or so. I went home, having had eyedrops that made my pupils dilate to the point where I spent the trip going "wow, everything is so sparkley" (my mum was driving as I wasn't allowed).

Two days later, I woke up, barely able to feel the right side of my body. Shooting pains, pins and needles, numbness, heavy and weak.

I did what any normal adult woman of nearly thirty would do.

Burst into tears and called my mum.

I owe a massive debt of Gratitude to my local NHS Hospital. A & E took me straight in, took a history, contacted MRI to get my scan bumped forwards to the next day, Moved me to an assessment ward, took a battery of blood tests, a CT scan, and passed me through 4 different doctors and two specialists.

 As such the usual route for MS diagnosis, a process known as 'Limboland' to many MS suffers, long process of elimination that normally takes weeks to months of referrals too all the different departments, was completed in around thirty hours.

After all this one of the doctors came and spoke to me before I was discharged. It was explained I would have another MRI scan (including brain, neck and full spinal cord), and an "Evoked Potential" test, which measures signals through nerves with electrodes and SCIENCE.

These two, the doctors are "hoping" will rule out MS. If they don't, it will be confirmed.

My past history, symptoms, and increase in relapses strongly suggest MS, and all the other more common causes have been ruled out. Leaving MS, or the really rare things.

So now I'm home.

In my flat, with my old lady walking stick, and a sense of humour still somehow intact.

So this is how I came to be writing this, this blog will track (hopefully) where I go from here.

Looking forward to finding out.

- Cookie.