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. 

Change the med?

Go onto new med?

present one has not been too bad holding things back, but the neuro at the last consult reckons with a leg getting gimpier, maybe stronger med would be better.

With the Corvid19 situation, not a great Idea, lower immune response not the way to go.

No eye fire as described last blog, just the same really, although the right limbs are not the same as the left limbs- that is noticeabler now, and finding a creack in the path is getting easier to trip over too, aha bugger.

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.

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!

Twinge here

Twinge there

The last month, been little twinges as neck as nodded the old noggin, down the legs, for a day anyway, but not as bad as the first time.

maybe the Copaxone is alleviating symptoms.

With new work had to put off 6 month appointment for a month...

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.

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.

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-

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.

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.