Twelve years

 Well Well Well goes the desert saying

repeat or wash again...

Twelve years later. It made sense that the kid had to chase the ball as kicking straight was not an option.

Pulling that downhaul tight was also starting to be weirdly hard.

Three doctors at the local GP clinic could not explain the twinges or strange differences in colours as seen by left and right eyes.

Glad the clinic had a temp GP that said "MMMM, lets get an scan on".

The new neuro consult (a professor I think) confirmed a mild RRMS.

Since then, with what I take, no bad symptoms have turned up.

Just weaker with that leg thing, losing a very expensive mobile and other times tripping in front of people on a CRACK in the path have been the only real downsides for a while now. 

Still not enough courage to work on a drillrig site.

Got a seniors card the other week, so, great, greyer and slower, the youngest kids now into the middle of their third decade and #2 wants an overseas wedding celebration. The eldest wants to slow the f4556 down now, so sounds like all's well.

Well I hope so. 

latest episode not going blind but way too weird

last episode of the ms

first week december 2019

working after 5pm on the desktop
could not quite focus at the say small end of the hour arn of a clock at position 8, like the last word as reading was what? what? refocus to the left, there is the word, uh ha.

what, blinking.

check again, alternate eyes

whoa

like a small unfocused spot all of a sudden to the left of the word been focused on.

both eyes?

sort of.

wow, getting bigger, like a stain or a little wildfire.

definitely not able to read to the left of the focus spot- "corner of the eye" was I going blind?

I know that there is a "blind spot" where the visual nerve buldles leave the eyeball- a small area of nothing that you just do not notice.

this was not, it was getting bigger- and after hours to call anyone and panic them too.

whan I say stain, maybe like when paper is burning or charring, as it spread, a small colourful sparkling boundary line tending to spread out from the new blind spot- and that area was still to the bottomish left of the visual scope- but not to one eye- like in a a region of the brain where the signal went and was processed and fed to "me"- my mind's screen if you like. and spreading to say the most of the left field of view.
in my head.

there was still a signal- light was noticed just not focused- blurred like in that area with the little sparkly line advancing- expanding, like a grass fire across a field. or bacteria expanding across a plate on the agar.
ahahahahahahahahahaaaaaaaah

then- the effect was gone.
panic over?
no lasting effect like the original scary blindness in 2012.

what the hell

ever noticed what happens when with eyes closed, and pressing gently on the eyeball there is a sensation of "light" opposite in the field of blank or dark view from the pressure?
was not like that.

pstscript (?)
another way to describe it- cardboard- if it smoulders away rather than burns, then imagine a sheet with a point in the middle starting to smoulder and spread, becomes a ring of say red, like a roughly expanding circle. 

aftereffect- nothing I think- just a bloody frig

Dec 2014

dec 2014
currently
cold weird feeling end of left foot
nil bidy twinges
last MRI, no new developments since last year
all good
and new medcine as capsules[/] rather than injections. sounds real good

this date, mid June-2014

this date, mid June-

have had slight numbness over a coin size area of pointer knuckle right hand for a few months

extreme tiredness One day- weird.

Weakness in right leg one day- sort of collapsed mid step walking down stairway to ground? interesting, once only.

Extreme weakness combined with lack of sleep resulting in walking and falling over- or was that a few drinks?

Some tingling down the legs with bending the neck, a few times a month but not for more than when it is noticed- odd- like it is not all the time!

Eyesight in left side appears to be returning to ful strength after nearly 21 months- still could not count on reading with it alone, but driving and all else- just fine. And about time too- 6 weeks recovery my thin ass.

post august '13 consult- not too bad

post august '13 consult- not too bad

Dr 'D' says of the last MRI in July, a new pea sized lesion in the brain. The post august '13 consult- not too bad after all!

Great. Well. Well. Well. Three holes in the desert... Was there a little superiority noted by self when the doc could not see how to view three CD's of MRI images at once? Yep. But she did appreciate the tip- if a program is on disk, then copy it and data files to temp folder, and use it to resuscitate a "dead" imaging file on a "faulty" CD, and then go and compare the annual file images- Voila! Well, it took a little time out of the following patients time  I reckon, but then, learning never hurt anyone... Unless a diagnoses learnt does... Argh.

Was nice to say to her that since I have been on one of the recommended treatment that there has been no significant relapses since the left eye deal last year, the week before the new consulting job.

The last few months have been relatively free of the numb and tingly symptoms too, but have noticed that there is a slight relaxation in the bladder control after urinating, the last few drops manage to spoil things, and this is rare, and after dinner too. Weird.  A fold of the willy in the jocks is a fix I think..

Which means that the post august '13 consult- not too bad result is good. It is still only a mild onset of MS.  The capoxone may be holding off symptoms- just think that a oral tablet treatment would be less stressful and worrisome when working in the desert if more work comes up- keeping it cool may be a hassle.

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.

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.

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.

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?

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...