Monday, September 23, 2013

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.

Wednesday, July 17, 2013

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.

Thursday, July 11, 2013

Nine months

Nine months

On copoxane

Since the start of the course of medicine-"copoxane", very occasionally there are  little tingly feelings in back and sometimes in the legs.
No episode or attack on the temple.
MRI next week, to see how well(?) the leedle pea bodies in the grey matter are growing.
Thought the effect of colourlessness in the left eye would be bad for the job- at least a little bit, but no, not affecting the job as long as someone else can verify we are calling a red "red" etc etc.
Wonder about reading street trraffic signs from afar though- better not have an attack on the right eye- else will be no good for reading/driving/describing rock colours or seeing what needs to be recognised.
Not depressed- just amazed at evolution, and coping strategies the DNA deals out.

Sunday, May 5, 2013

misbehaving vision


Yes, a new symptom of my version of MS I reckon.

Only about an hour ago, there was speckling occurring, a shimmering or glittering like a thin curving squiggly line nearly in my line of sight.

It was a 3/4 circle almost. A fracture there.

It was smaller, like less than a palm width at arms length.

Now as I write it is to the left, with  both eyes shut or open, very slowly spreading like waves from a dropped pebble in a still pond.

I thought at first I had looked at the desk lamp, the old image of what is left when staring at then away from something.

No, it is glistening, a line, snakey or zigzaggy. Pixellation. Is it fading away?

Great, my work depends on Looking at things, and driving too.

Saturday, April 27, 2013

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.
Could I call out to the kids?
No- was instantly asthmatic!
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,

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!

Saturday, February 9, 2013

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...