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Sunday, November 25, 2012

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.

Monday, November 19, 2012

Ready squint...Oh

Set up a Injection Seminar


I saw the local GP's nurse today as far as the instructions for using [haha] Copaxone wants me to do, especially for the first use anyway.

"Like diabetes patients have to", said Lauren, who was quite supportive.

So I did my first self injection with: a squint and a n d  o  k,   p u s h   i  n  . ...

OH?

Never felt a thing!

Shultz like- "Ah feeled Nudink!"

Afterwards, there is the stinging as was fore warned about, but there you go.

BTW, the eye trouble did not wink away...

Tomorrow a new start

Prescription for a New  Start

A prescription arrived today. For Capoxene medicine.

paper attached recommends to start with some help-like a partner or doctor or nurse.

Well, a] cannot do, b] why? and so c] is at 10:45am...

It will not be traumatic... just the start of a new treatment to alleviate the next effects of my MS.

Hmm, a new Start for sure.

Friday, November 9, 2012

Decision made

Why did I have to decide?


Ernie my neuro wanted me to choose which MS medication.

Does he not know which is best? Out of six?

Hate that sort of  thing.

After reading some booklets all about the various drugs[?], the tablets looked good but the capoxone looks like the readiest and maybe works well, as my aunt thinks it is pretty good for her. A day of monitoring the tablet effects in a hospital bed put me off even if it is 50% effective.

A text message was sent to the nurse to pass on the decision to Ernie, hope that means it is in the mail?

And the greyness and macular degeneration LIKE effects in the left eye are slowly easing back thank goodness.

Thursday, November 1, 2012

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.

Monday, October 29, 2012

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.

Saturday, October 13, 2012

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




Thursday, October 11, 2012

a letter


Attn Ernie ****
From Tony Ford, 146 Fitzroy Sale, 11/Oct/12

Hello Ernie,
I last saw you in February 2012. I wish to have a chat maybe or a reply about MS related(?) eye sight problem if the following information is not enough.
You thought at the time that I had a pretty mild case of MS if at all.

Yesterday, Wednesday 10/10, I stared out my window at some white flowers- thinking I had slept on my arm/hand with my face, as my left eye seemed rather reduced in capability- that is, like I was wearing dark sunglasses compared to the full glarey whiteness that the right eye seemed to perceive.

Overnight. Because Tuesday I went to bed with “full capabilities” as discussed last visit. There is a reduced perception of ‘redness’ of the right eye still.

My optometrist and my GP suggested I better get in touch with you about this and think about a course of capaxone(?) soon. As my case notes state, my father’s sister has MS, and she has in the past related that the sooner I get on something the better I will be.

After the eye episode, I was in a panic mode, as I drive a lot for a living, and to tell the next thing, I started a new (Geology consulting field) job today.

I did think maybe it was an anxiety related episode.

As I type this, it is still hard to read the screen with the left eye alone- like a macular degeneration effect in patches making it hard to concentrate when reading, and with a grey filter on whiteness (flowers, a white wall)- almost like the trick of polarised lenses.

There is a slight ache around the eye orbit(?) back around behind the eye too.

The only symptoms(?) I can relate is a slight cold like infection that lasted a few weeks before hand, and a small dose of the runs Tuesday, if that makes any sense.
There was also a small tingling effect down the right side in some places about a few weeks ago when I leant my head forward, for a few minutes only, not since.

Barrie the optometrist found nothing wrong on inspection yesterday-
I said I would have you informed that I visited if you need some retina images.

I will be in the field the next two weeks, but would appreciate your time, attention and soonish response on this matter, I know you are probably run off your feet in the type of thing.

Kind regards

Tony Ford
Sale

Since this was sent, last night, I have tried to evaluate whether 48 hours after this blindness(?) has changed.
I think it is a little worse, texting takes twice as long anyway.
Typing this is not to bad with both eyes, but with only theright I really have to PECK slowly at the keyboard!!!!!!!!!
Sight is smudgier too I think.
Ernie has not replied as I type this out.
I love reading, and if this gets worse, how can I drive at night, or even through the city.
thinking that I should have pushed the medicine regime, what ever the small side effects.







Wednesday, October 10, 2012

WHAT THE?

That's Not Quiet Right!

After I got up to make coffee this morning, after the howling fighting horde had whizzed off to school, I looked out at Tarn's jasmine bush with its white flowers tumbling over the...

WHAT THE?

It was foggy smoggy and weird. I rubbed my eyes to clear them up as I had done since I was a kid.

The Same...

Oh oh.

Yes, the right left eye had lost definition  as if some pixels could not recognise all the colours of the white flowers.

The sky and well everything was like seen through a smoked and vaselined lens.

Bloody bugger!

Looks like another MS episode.

Or macular degeneration.

Got on to the eye doc, my aunt with MS and the local doctor.

Nothing to do, looks like the neurologist needs a call and get onto the "capaxone" asap?


left eye
right eye

I tried to see what I could do to show what was wrong, and may add to it-

Friday, August 31, 2012

August

Last week

The twinge came back, for a half hour, lower back, when nodding. For about 15 minutes

I fell over when turning and answering my mobile phone! It might have been my ankle sprain avoidance routine as it was rough ground, but surprised the shit out of me! I do not wanrt to blame it as a symptom, but...

I looked at my latest MRI scan, and could not tell if anything had changed- ah well, will have to wait for February check up.

Saturday, July 28, 2012

Just another scan

Second Scan

Last February my neurologist asked me to get a second MRI scan, to be done mid year, in order to compare the scan done last year.


There was a cancellation this week, and the operators called me to jump ahead a few weeks. If I liked.


Yep.


Took home the disk with the images and had a look for any differences from the last scan.


And I cannot tell, so will wait. Easy.


No other symptoms to recall the last few weeks.


A cold does not count. Although... It did start last Monday, and really slow to get to the coughing stage....

Ah well.


Thursday, June 14, 2012

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.


Wednesday, May 30, 2012

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.

Friday, May 11, 2012

Floored

Not Hygenic


I like to make dinner, and early. Especially if the descendents have to go out.

Late yesterday afternoon, I spent some time making a quiche.

Once cooked, removed it from the oven with a cloth.

Repeat, A Cloth.

So burnt myself and dropped the lot, on the floor, where a cat had been waiting impatiently for scraps about 20 minutes beforehand.

Binned. Shrug. Have to.

A descendent removed retrieved some frozen party pastries, and why not, the oven was still hot.

I put them on a tray.

I came back to see if they were cooked.

I had not put them in the oven, and descendent was to be at band hall soonish as well...

So there was no band hall practice- the sore foot was just the final excuse not to venture on the road.

Was it due to MS somehow? A clumsiness inherent in the dis-order?

Dunno.

Maybe this should be filed here instead, like, bad luck to be born a duck, or filed here under overcooked, over worked and underpaid?


Wednesday, May 2, 2012

Note to self May-12 a

note this
is it a- what?

I have been feeling off key the last month or so, and it probably doesn't help I stay up late catching up with recorded programs, a Lot.

This week- feeling like my legs may give way if I don't concentrate, like a weakness in the knees?  Concentrate sounds weird, but I am trying to notice more than usual, any unusualness in everyday activities. Is it symptoms of MS?

And my right foot is Slapping the pavement. I know I hurt myself at Easter by a short run without a warm-up. And possibly a few years ago when trying not to drop a very large heavy netting [fruit] box on my foot in the winery. But different boots...

The back is better, the neck- not too uncomfortable to sleep with. Does the osteopath help?

The bee sting like feelings in the knuckles not so intense, but still cracking them a lot to relieve the feeling, which may return or not with in the hour once or twice more.

Or is it just old age.

Saturday, April 28, 2012

Why blog the slippery Slope of MS

Why blog the slippery Slope of MS, a Motivation For This Blog

MS arriving 


I was reminded the other night that Tim Ferguson, formerly of the
DAAS,  has MS. Here he talked a bit about it, June 2010. He has some trouble with MS and uses a cane at times. But is still working on spreading comedy to the masses. Tim is not the only one I know of now besides my aunt to live with Multiple Sclerosis. Because I think I have MS, that is why blog the slippery Slope of MS is happening.


An additional motivation and inspiration is Michael J. Fox who has Parkinson's Disease and is getting on with life as best he can too.

Another is a lady with MS I know living two blocks away. She now has a powered buggy to run around and shop with/in and does not need a taxi now in fine weather. No cane down the street! My future?

Told

When Dom the neurologist let me know I probably have it, I was not shocked- it just explained what was going on, and I had something to blame the odd clumsy moments I have been having over the years. Or do I?


Reaction

I do not know what he expected me to do at that time. He being a very proper Brit I suppose, was polite and quiet, whereas I was pretty chuffed at that it was only MS, a  few little pea sized shadows of scarred tissue in my head, and not anything else. In his and Ernest's opinions anyway.

The kids are healthy/fed/clean/sheltered/clothed/washed/laundered, their schooling good. Bedrooms are a shocker but.

LIFE is rolling on almost fine at the moment apart from it not living
a) UP to my expectations or
b) OFF a lotto win.
And the bee sting feelings in the joints that my dad says is "arthritis, son". The poverty line is RIGHT THERE... Come on back oilpatch...

The few people who have been told of what I have have been a little shocked, but my obvious, self evident confidence that MS is not currently affecting me has won them over that I am okay. I think. My little family and MS news was not horrifying to them either. The larger family. Hmm. My father wants me to make notes or a MS Diary on episodes of recurring symptoms, to diarise it sort of. Well, here we go... (and that reminds me of Raising Hope TV show, ho ho ho)


Real?

Or is my self delusion of being diabolically witty and cynical blocking a self awareness of being on a down hill run into a frightfully smelly pit? So what. My will was done shortly after Tarn was lost, and the super is fixed up too. Hopefully, as it occurred to me yesterday, I will get to hold a grandchild one day. That would be nice I reckon.

Hence Why blog the slippery Slope of MS.


Friday, April 27, 2012

Daggy Dad & MS

Easter 2011...

My sister said...

"Sounds like you should see a general practioner [medical doctor:GP]"

This was her reply to my telling her of a weird feeling in my left leg when I nodded my head, like when you knock your elbow, but repeatable, and without pain.

So I booked a consultation with the local doctor. The next nine months was a time of some uncertainty, and inevitably, a [probable] prognosis of multiple sclerosis. A new road: Daggy Dad & MS

Possible symptoms as I look back or any sign before Easter 2011?

90's to 2006

When I think about me, I think I am fit enough for a fifty something bloke. I do not do anything like gym workouts, or jog, or any sports apart from windsurfing or speedsailing on my windsurfers. Or trying to teach it. The career change of raising kids and then doing that and having a part time delivery job instead of working on a drilling rig as an oil/gas exploration geologist leaves me plenty of time to stay fit. Leaves.

I think back and try to see whether MS was coming on earlier with any recognisable signs. My dad's sister, who I have never called "Aunty" or "Aunt" as far as I can remember anyway and is about twelve years older than me, was diagnosed in the mid 90's, [as my late grandfather told me c.a. 1999], from memory. So maybe it is in the family.

In the late 90's, I noticed I was tending to easily get sprained ankles, is that a symptom? I dunno, but I was pretty care full at work and when windsurfing after that time. I once half filled a fresh jar of coffee with boiling water instead of my mug, but I was trying to do two things at once, as I told my sister who was on the phone at the time... Not a symptom really, but funny at the time.

2006 to 2011

During the late noughties:

  1. I had funny numb spot near [one ] of my knees, I thought that was weird, but not worth telling anyone. I could tell I was brushing my leg, but it felt different from the same spot on the other leg, skin wise anyway..
  2. Numb spot on a left hand finger- weird, but, a/a.
  3. I noticed that I was seeing colours differently between left and right eyes. Red colours were not as bright with the right eye compared to the left eye, and overall vision was greyer(?) as well in the right.
  4. When I walk down steps, I have an odd stance or feeling, like I am not bending my knees enough or properly- but I do not want another ACL or joint scraping job done either.


With the colour thing, I told my optician on the usual "I dropped a twig in my eye doing the garden" visit, who sent me off for a special batch of tests in the big smoke, which resulted in Nothing Out Of The Ordinary Sir...

February 2011

I was sitting  at work in my delivery van, bent my head down to switch radio stations, and BANG! there was a strange feeling down the left leg from bum to foot in a couple of spots, like if I had hit my elbow and got that same strange feeling, but it was in a few but only finger wide spots. That is, I could touch the spots, not like a line down the leg in it.

As well as the feeling [twitches?], I had a sore neck at the time too, relieved by some rolling the noggin around and back stretches and cracking the spine, and sometimes relieved by a chiropratic session.

In addition was an occasional weird sound that could be tinnitus in the left ear. Like a mis-reading of a CD, a sort of random on/off static  or clicking like sound, not annoying, but there.

Easter 2011 at The Gurk, I was telling people about it, the eye trouble was a repeat from a previous year, with no comments as to what it was, apart from my sister. Ree said, see a GP, soonish!

Seeing the doc

Well, I was later that month at the local clinic, the doctor was new to me, the usual family GP was not in. Start the spiel...

After describing a few things to her, she wanted me to get x-rays and an MRI. Just in case there was something going on.

From the x-rays done on my neck, it looked like there might have be a boney growth in a neck vertebrae nestling up too close to the spinal cord.

The doc said, "Easy, we can get in there and get rid of that".

Wow, "we" are not comfortable with "us" diving in with a file there!

In any case, the doc wanted me to see a neurologist on the clinic's list of available specialists, and one was at Monash in The Big Smoke. [great, more travel...]

After buggerising around, as the guy she had on her list was actually in another state, the clinic people at Monash finally got around to sorting that problem out and booked me to see Dominic, mid year.

Unfortunately, I had my fan club with me (my twin pre-teen gels) when I saw Dom. Which, was not a problem just I felt odd. We talked over what was going on with me, what was odd and sorting out age and MS related symptoms and all that, and Dom said that I should get a MRI scan done soon.

Well. There was good and bad with that. The lesions in my neck from the x-ray were enough, a possible solution with out surgery!

Lucky enough, there was the 'portable' MRI on a Semi-trailer visiting the local country hospital in a month or two (...!) and I was booked in. 

In the mean time I was booked back into the Monash neurology clinic for some tests a few weeks later.  Okay then. I wanted to get to the bottom of it all.

Another two hour city bound trip for... a thirty minute eye test! As a scientifically interested person, it was fun to see in action how my brain was working. Or not.

next consultation

From the MRI images it "looked like MS" to Dom when I saw him again in September. They were not excellent images according to Dom, as if the radiologists in the portable unit were useless! But readable enough for him to confirm what he thought was clear indications of a slight to mild case of MS.

The eye test was also a confirmation too, there was definitely a problem with the right eye signals, and maybe a little bit with the let one.

I was to start thinking about possible treatment courses. Two types, one with some side affects

My aunt told via Skype when she was travelling in the US, to get on to a treatment as soon as possible, as that she regretted not taking it up as soon as she could have.

Latest consultation

In February 2012, I saw Ernest, a neurologist specialist in MS at the Monash MS Clinic in the Big Smoke. Another city trip for a twenty minute consult. Half the day gone in travel.

Yep, he told me I had a slight to mild case of MS. Daggy Dad & MS, the new road.

Hmm. Do I need to go to medication? A treatment plan?

No was the answer. Not until a definite progression over the next year can be seen, i.e. from another cranial MRI about August and another consult next February [2013].

Ah well, a new adventure.
PS my sister thinks she might have it too, a numb tongue...