Latest scan- mmm

Latest scan- mmm

Not being a specialist- from the data disks that I can access of the grey crap in my noggin- I cannot tell what is going on.

I think that the pea sized bodies in there are the same.

Looking for schleria[?] on the left eye nerve myself showed me nuthin, nuthin, nuthin.

Will have to wait for next visit to see what E.Butler and co. can find.

The left eye situation varies day to day oddly enough- sometimes I can read sentences and the road looks gret as well, or, vision seems greyed over, and words hard to make out.

Different every day.

Latest scan, mmm. I cannot tell whether status quo is as last year or not. Bugger.

technical help

I finally tracked down a help group

After the annual extra-large-family- gathering at Easter time, where one can spend four days literally catching up with nothing in particular but renew kinships at the same time, I was persuaded to join up with a MS help group by my aunt, a long term MS sufferer.

"Aunty" * showed me a Copaxone Injector Kit that looked pretty awesome in it's use. No needle shock as it were and easy to use. She made me practise a lot with a done syringe for half an hour. Even then, by myself using the kit, I still forgot to remove the red cap- wasteful- all over the floor when I realised. But then, I have wasted two others too! Anyway.

Some prehistory- just a few weeks before, up early like 5am for work and I was doing the self injecting thing, and not really noticing how I was holding the dang thing, and must have paused and drew back some-a little bit- blood back- Well when I realised THAT it looked like a red blob in the syringe- I went- CONTAMINATION ARFHGH$%^! Dummy! I took the needle out almost straight away and went into a calamity-oh-WTF-is-going-to-happen mode, and went and laid down on my bed.
I was feeling weak.
Then hot.
Shakey.
Could I call out to the kids?
No- was instantly asthmatic!
Cold.
Spasms wracked my baddish back most intently.
Needed to evacuate the bottom end.
In the rush to the loo, there was an urge to throw up as well.
Get there, hot, cold, shakey,
and
Nuthin'...

Creaked my way back to the bed over-thinking  what can I do? Aids? How did the thing get through quality control etc etc.

Anyway- ten minutes later or so- felt fine, like a plague had not got me feeling so weird,  not contaminated with an instant deadly virus after all!

When back at work, I did the quick rounds later on, of "Help me" type calls: the pharmacist and aunty, and they said- "shock is all, probably happen a few times the next few years, just a typical reaction".

Me- sure...

Oh yes, I do remember reading that too...

Anyway- back to Easter- my aunt encouraged me to grab a help bag kit- "autoinject2". Alright.

I had previously sent off to the Copaxone Help group, but the Join Us note had Never Arrived I was to find out.

I called the help line on the mobile phone at lunch time the Friday after Easter- leaving a message that I had tried to get in touch in November...?

A few hours late, a call back.  From "Pip! Call me Pip!" And how could she help me?

Well- my life story and a bit of quiet shock from the other end and then a pat on the back for how well I was going all by myself- but now she knew what to do for me, and would be keeping in touch and sending a help-pack and all.

Help pack with auto-inject kit arrived by HDL special delivery----

MONDAY morning!

And a few weeks later a call back.

That's great. Just need to attend the MS groups that meet around here at odd times- I completely forgot the last one.

Ah well. Not taking the MS thing lying down, but then it has not really knocked me about that much, like some people I know now- speaking of which- NS and camcer did take Chrissie Amplett of the Divinyls way the other week, that was sad as she was from over the Bay from me as a kid and my age about. Bugger.

Still walking and talking, I still have the odd tingles below the waist, but not as intensely as the initial feelings, nor has the eye sight been affected again, but then, nor has the left eye completely recovered, but I can type this so it must be getting better.

By the way, I have just finished reading a few great books or three on my Kindle#2-
"Power,Sex Suicide : Mitochondria and the meaning of life" by Nick Lane and
"Life's Ratchet : How Molecular Machines Extract Order From Chaos" by Peter F. Hoffman.
That was a few intense weeks I tell you! Highly recommended to everyone.




*And she probably might hate that moniker as she is only 12 years older than me!

Huh did not hurrt

Huh it Did Hurt later

A week into the new self shot medicine that does not hurt to do.

But it does man, a few days there is still an Ow to feel where the shot went in!

Bugger drugs! Man, a sore spot like that will take a while to get used to.

The left eye is still recovering, I can read the key board much better than a few weeks ago anyway.

White cars are still not White though.

What a bugger.

lil old visit

Visit to the neuro today

Another 3 hour trip to this side of The Big Smoke to see what I can do with the last episode still dimming my sight... and only two and a bit back, Not Speeding, and was a lil dampish road-wise.

Hooray- Ernie said I can go on MS meds- capaxone looks good at 30% reducing the effect of an episode, but there is a new one that can be said to be 50% effective- Gelany

Just the side effects... could be fun trying it all out I spose, this dim sight could be frightening next time.

I haf sum nuus

Good and bad news on last status-

Thanks to my aunt, I have gotten onto my neurologist's clinic, and got a booking earlier than January  this week in fact.

de bat nuus- still not 60% in the left eye- the orange street lights are now just grey glows in the dark.

It was not good to be on the first geology job with a bung colour filter I tell you. I had to ask one of the fellas if some clay was brownish or reddish, that's what I'm losing out on- colour judgment.

If it is just "optical neuritis", there is still the chance that it will come back to normal. I can nearly read this screen properly now, with funny after images chasing the words across the page, distracting me in shades of blue and yellow, through a greyish filter.

Crossing my fingers that it will all be okay in a few more weeks, it's been three weeks so far... Maybe I can go onto capaxone[?] sooner than later, as joan wants me too.

Eyes are dim

Eyes are dim I really can see tho...

Documented today

"Hi Joan
My visual acuity is still the same in the left eye-  but can read the screen with it, not like yesterday, maybe getting better. There is a slight ache behind and up the left ryr, and it sort of hurts to rub it too. My other concern is, is it a tumor etc growing near the optic nerve?

Imaging:

It is weird- concerns the after image mostly.

Like when from my bed I look out at the hall wall, and move the doona half way up, there is an after image with purple pixelating speckling spots in the shade as it moves up, and a lasting darker after image when I drop the doona, while still looking at the wall of course.

It is like there is a slow down of information, and time is needed to fill out an image properly to match the right eye.

It makes it hard to read, the central focus spot is getting smaller than a few newsprint words in diameter, and that is with spectacles.

For instance staring at a line of words and I raise to the line above, it is pixelating until I  slow the rate of ye movement and it is recognisable again.

Is this too much?

Bye, I am off to work Monday
Tony"

A reply was to SEE A DOCTOR
then referred to optic neuritis- which I checked and voila

http://en.wikipedia.org/wiki/Optic_neuritis
http://www.themcfox.com/multiple-sclerosis/ms-symptoms/optic-neuritis.htm
Hmm- exactly!

right

left and right

left like an after image sort of

The dimmness is nearly spot on, colour too brown here

Left

right

tingle in my left leg

Tingle in my left leg back after absent almost a year

Cold and Twinge, another diary entry on symptoms

As I sit at my desk at lunchtime, I noticed that the symptom of a cold damp feeling is back on the skin of my thighs.  Was not like that yesterday as much. It is winter, yes, but not that dang cold in the house. Check my weather station!

And then, to see what else may be going on... I nodded my head and there was a tingle in my left leg! Again, like last year. As I test it now, that feeling is not there. The cold is, like a mentholated cold rub.

This time the tingle was just below the knee, the left side, on the outside, next to the calf muscle. In the skin more or less. Like when you have feeling coming back after a dental intervention with your mouth an lips, or recovering from a pins-and-needles session, just that twinge in the leg. Not like knocking your elbow's funny bone type feeling.

Great. But would you guess what is really weird?

Earlier today I got a call at 8.30am, from the transportable* MRI people, to book a session for the what may become an annual event, "Scan Tony's Head for more MS scars". With the last scan, it could be seen there are only a few peas sized blebs inside my skull, and a shading in the spinal cord in the neck.

Now how coincidental is that?

Booked for August, yay me.




*Where I live is about an hour from the nearest institution that has a MRI clinic, BUT the local hospital does have a visiting MRI that is transported about the region, which is so so convenient for us country folk, oh yeah.

wet Toe dry boot

Yes, a Wet Toe, but fresh dry sock?

Dry boot too.

Is it me or the boot?
Maybe I need new boots?
Just a daggy dad looking for nothing bad... Just onset or mild MS?

But three pairs of footwear [bootish style] and the strange feeling of having a wet big toe or half the left foot feels like it's wet. Sometimes.

When I am sitting usually. Here at the desk like.

Wet toe dry foot. 

Or maybe while watching the teev in the Moran Armchair that is not quite right lumbar-wise;  the cat is drippingly purring all over my pot belly while I try to switch channels or reach the wineglass without upsetting her...


And sort of nearly stumbling sometimes, you know, tripping over the toe of your shoes/boots and looking back for that crack on the path or floor that you KNOW was not there anyway.

Is this what it means to have a slowly spreading build up of scarring scabular neurons in the head (where else stupid?). A numb feeling, strange feeling, or what?

Note from mid may 12 
next symp 
cold wet toe while in comfy socks and boot
strange cold? numb feeling while seated in car for a while


left ring fingre- tingling at end


on top of the 'cracking' knuckles a lot.


My dear brother is encouraging me to speak to my aunt that has had MS for about twenty years, she would be good to talk to- I do not know, we skyped once while she was overseas earlier in the year and she wanted me to go on meds straight away and the neurologist I have met about that, one consult mind, said, "Nah not yet".

Dunno. Yet. Feels too personal, even sort of avoided everyone this year at the annual cousin party in the country at Easter so not to feel 'special'.

It is not like last years episodes of when I nodded in the van and I had patches of tingly feelings down the left leg from the bum cheek. Which turned out repeatable over a few months only, thanks for asking... That's the scientist in me- has to be repeatable!

Oooooh-wah?
LEFT side?
Maybe related to the MS after all! Just a fake wet Toe dry boot?

PS to me- Just noting what's goin' on man, watching for symptoms?

PS2 Later on- I figured the strange feeling, which tonight seems to be spreading  to my thigh on both legs is like a menthol rub, cold type.