Im a Freak!

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Simon Dean - 05 Dec 2006 17:22 GMT

Hi There,

I feel like a freak.

As you will recall my story, in the downward gaze looking at a piece of
paper, for a month in October 2005 and then a month in October 2006 the
text would become blurry, like it wasn't on the paper, it was jumping
out at me, kind of like someone had just administered cycloplegic drops.

* Worth 4 Dot tests give five dots.
* Frisby Stereotest show no shape jumping out at me.
* Mallet NFDT and Maddox Red Line test gives odd results
* Bagolini seems OK

The MRI is OK though they did quietly discuss a couple of things in the
background.... mentioning about fatty tissue around one of the eye
orbits I think, muttered something about CSS ???, and if IIRC myasthenia
though the end result was nope, there's nothing there, and it all looks
pretty normal.

They havent had the migraine and electrical results back yet, but my
field of vision is fine.

They're going to keep an "eye" on me, ho ho ho, but because Im not
currently presenting with the same issue because it's intermittent,
they've said there's nothing they can do, and they don't know what's
causing it basically.

They said basically I compensate for my whatever phoria it is / 4th
Nerve Palsy and I do it at different degrees depending on how I am...

But Im just concerned about it being intermittent and coming back again
some time in the future.

If I am decompensating, how can I make sure I keep compensating? Should
I even be compensating every single day of my entire life? Is that not
putting too much strain on me? There's got to be something. There's got
to be an explanation.

Quick medical history:

2 x Quadricep Tendon repair April and June 2006
1 x Toenail Surgery October 2005
Lichen Aureus 1996 onwards
underactive thyroid March 2003 onwards
Elevated Liver Function June 2006
Slightly enlarged liver and "very near normal" results, October 2006
Appendicitis and removal 1984

Age 29.

Let me know if there's now anything I can do, like, getting a hold of my
notes.

Thanks
Simon

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John H. - 05 Dec 2006 23:16 GMT

Join the club, have a similiar problem. The doctors don't know what is
going on, the problem is intermittent and very frustrating. Just last
week though some Australian reseach indicated that the downward gaze
causes the eyelid to lower and this, over time, can distort the cornea.
This research is still in the early stages but does suggest one avenue
to explore: slight, temporary, corneal distortion. So ask yourself
this: does the problem occur with ongoing downward gaze, as in
sustained reading?

Hope this helps because it is not helping me.

John.

> Hi There,
>
[quoted text clipped - 52 lines]
> Thanks
> Simon

Reply to this Message

Simon Dean - 05 Dec 2006 23:39 GMT

Im bewildered by the fact either a nice desktop lamp, OR a pair of
sunglasses will help alleviate the problem! Maybe it's something to do
with a particular light level. Or maybe if it is some corneal distortion
that geting around that light level with sunglasses or light will change
the diameter of the pupil and therefore I won't be so reliant upon that
particular spot....

I dunno. Im not a doc!

I'd have hoped if there was any physical manifestation there, that they
might find it. I'm also curious on the fact that although intermittant,
it's a long time between episodes. It really does make me think it's
something to do with my thyroid.

It really annoys me. I've been for a whole barrage of tests, and they're
unable to tell me anything! Apart from 4th Nerve Palsy and I don't need
PRISM glasses because Im compensating.

Which is fine, apart from the times that Im not compensating, or maybe
this is where all my eye ache is coming from! The optician doesn't want
to prescribe PRISM glasses because the results are inconsistent, and the
hospital won't do anything anyhow because I currently don't have a
problem! When I do experience another one of my month long "episodes"
I'll book an appointment with the consultant, but being the NHS, i won't
get to see him for 6 months!

Why do I never think of these questions while Im there?

So Im compensating. What am I compensating for? What are the
measurements? What happens when I don't compensate? Is there anything
you can do? All this compensation, is it putting tremendous mental
and/or physical strain on me? Could it be relieved by doing something
else? Why can't anyone tell me!

Be just right for me to have some totally unique rare condition. Hell, I
bet no one's heard of lichen aureus? And quad tendon ruptures are pretty
rare too!

To answer your question though, no, I don't notice it in sustained
reading. It only happens under very specific conditions, very
sporadically, but when it was happening, I'd be OK for half an hour,
then all of a sudden it would slowly kick in and the paper would be
disorientating.

Cya
Simon

> Join the club, have a similiar problem. The doctors don't know what is
> going on, the problem is intermittent and very frustrating. Just last
[quoted text clipped - 65 lines]
>>Thanks
>>Simon

Reply to this Message

John H. - 07 Dec 2006 00:12 GMT

> Im bewildered by the fact either a nice desktop lamp, OR a pair of
> sunglasses will help alleviate the problem! Maybe it's something to do
[quoted text clipped - 9 lines]
> it's a long time between episodes. It really does make me think it's
> something to do with my thyroid.

Yeah, I've come to the conclusion that the problem may have a wider
physiological basis. When I had an attack in my early 30's the
specialist did a complete exam and came to the conclusion that my
problem was neurologic and there was nothing to be done about it. Now I
remember this very clearly, even though it was 15 years ago. I was
walking back to work from his surgery and thought to myself: what has
changed? This is what:

We had started using computers extensively at work.
I had bought my first computer.

--

So 6 months later I bought a new computer and bought the best monitor
available. 3 years later I went back to the doctor and I can still
remember him looking at me and saying: your vision has improved! The
vision in your left eye is now better than 90% of the population. He
was mystified by this. Remarkable given I was prescribed very weak
glasses with the first attack nearly a decade beforehand. I used to
think it was the monitor but now think that was just wishful thinking.

It is worth remembering that vision takes up lots of brain space. Any
global disruption of CNS function may likely impact on vision. For
example, visual hallunciations are much more common than auditory
ones(in non-psychotics).

> It really annoys me. I've been for a whole barrage of tests, and they're
> unable to tell me anything! Apart from 4th Nerve Palsy and I don't need
> PRISM glasses because Im compensating.

I have probable third nerve palsy. Interesting.

> Which is fine, apart from the times that Im not compensating, or maybe
> this is where all my eye ache is coming from! The optician doesn't want
[quoted text clipped - 3 lines]
> I'll book an appointment with the consultant, but being the NHS, i won't
> get to see him for 6 months!

Yeah, this is very frustrating. In June this year I went to see the
hotshots at a local teaching hospital and they found nothing. Now this
is where I have a real problem because for the last 4 years the problem
has been so severe it has made work impossible. But I don't have any
evidence of a specific visual disabilty! So then people begin to look
askance at you: are you malingering? The arrogant f.ckers. Hell,
recently the Rehab service here in Australian even sent me off to a
psychiatrist! He said I was fine. The Rehab consultant even suggested
to me that if the doctors cannot establish the problem then perhaps I
don't have a disability. Yeah, like I would spend all this time and go
to this trouble to find solutions if I didn't have a disabling visual
problem.

> Why do I never think of these questions while Im there?
>
[quoted text clipped - 3 lines]
> and/or physical strain on me? Could it be relieved by doing something
> else? Why can't anyone tell me!

As one opthalamo said to me: we can only examine the eyes, what goes on
behind that is not our domain.

> Be just right for me to have some totally unique rare condition. Hell, I
> bet no one's heard of lichen aureus? And quad tendon ruptures are pretty
[quoted text clipped - 5 lines]
> then all of a sudden it would slowly kick in and the paper would be
> disorientating.

Fine, I also experience these rapid fluctuations. One of the weird
things I have managed to establish is that if I lie down for a nap the
vision often deteriorates. Prior to the nap my vision is as good as
vision can get, 15 minutes later ... . Last year I started using a
night mask during sleep. Prior to that, upon waking, I would have
blurred vision lasting from 1-3 hours. The sleep mask straps broke so I
stopped using it, just to see what would happen. A few weeks later,
this waking problem re-emerged, bought another sleep mask, gone. Now I
have a rather recessed orbit in my good eye, legacy of botched surgery,
and so wonder if while sleeping there is pressure on the eyeball
causing either corneal distortion or a blood supply problem.

See, I'm that desperate that I just have to reach far and wide because
the medicos have long given up. I can accept that limitations of the
current state of the science but what I cannot accept is this attitude
that there is no real problem.

> Cya
> Simon
[quoted text clipped - 68 lines]
> >>Thanks
> >>Simon

Reply to this Message

Simon Dean - 07 Dec 2006 14:17 GMT

>> Im bewildered by the fact either a nice desktop lamp, OR a pair of
>> sunglasses will help alleviate the problem! Maybe it's something to do
[quoted text clipped - 20 lines]
> We had started using computers extensively at work.
> I had bought my first computer.

The only thing that had changed for me at work, is that I took some time
off sick and returned after a lengthy absence. But out of the three
absences that doesn't explain why I had no issues after the second
absence, only one and two.

The other thing that was different in one and three, was that there was
only one fluorescent bulb above me. Usually there are two fluorescent
tubes per light fixture. But there's several light fixtures per room.

But then, that doesn't explain why I had similar issues outside of the
room, and for example, looking at my iPod in my car.

The light Im under at work, is a sort of dull grey depressing light.
Blasted fluroescent tubes. But the yellow halogen or sunglasses really
gives things a "deep" warm glow. It's like it adds depth and definition
to everything.

Which then gets me thinking about other times. I usually find colours
outside are grey and washed out too. A pair of sunglasses believe it or
not, really makes everything come alive. Things become bold, with depth,
clarity, colour, I see more shapes and lines and brings out the contrast.

Im confused by this.

Actually some things spring to mind on this in relation to sunglasses.
Polarisation and UV Filters... I wonder... Must dash off to have a look.

> So 6 months later I bought a new computer and bought the best monitor
> available. 3 years later I went back to the doctor and I can still
[quoted text clipped - 3 lines]
> glasses with the first attack nearly a decade beforehand. I used to
> think it was the monitor but now think that was just wishful thinking.

This too sounds familiar... and I think you said below you have a weak
prescription? but...

My vision is up and down... I drift between a weak hyperopic correction
and plano. But that seems to be linked to my thyroid, believe it or not.

I asked the doc when I saw him whether my recent liver test results
could cause issues; he said no; but of course, enlarged liver COULD be
fatty liver, which then COULD I guess be linked to an insulin resistance
and therefore type 2 diabetes. But that would I would hope be picked up
on by routine blood test results.

> It is worth remembering that vision takes up lots of brain space. Any
> global disruption of CNS function may likely impact on vision. For
[quoted text clipped - 6 lines]
>
> I have probable third nerve palsy. Interesting.

Yeah, sounds like a couple of similarities.

> Yeah, this is very frustrating. In June this year I went to see the
> hotshots at a local teaching hospital and they found nothing. Now this
[quoted text clipped - 8 lines]
> to this trouble to find solutions if I didn't have a disabling visual
> problem.

Even my sister thinks Im being too paranoid going for this tests, and
those tests. I just have to point out that I never asked for the tests,
the doc sent me for Liver tests after a routine blood test came back
with Elevated Liver Function, and the optician referred me to the
hospital when my Mallet tests came back inconsistent!

I then point out that Im not the one who reads the books by Bates!

>> Why do I never think of these questions while Im there?
>>
[quoted text clipped - 6 lines]
> As one opthalamo said to me: we can only examine the eyes, what goes on
> behind that is not our domain.

The eye hospital over here sent me for MRI's and what and various
migraine tests. Still waiting for the results of the Migraine tests.

>> To answer your question though, no, I don't notice it in sustained
>> reading. It only happens under very specific conditions, very
[quoted text clipped - 13 lines]
> and so wonder if while sleeping there is pressure on the eyeball
> causing either corneal distortion or a blood supply problem.

Yeah, Im rather curious when the docs just stood looking at my MRI
pictures and mumbling about CSS ?? and Fatty Tissue around the orbit.

> See, I'm that desperate that I just have to reach far and wide because
> the medicos have long given up. I can accept that limitations of the
> current state of the science but what I cannot accept is this attitude
> that there is no real problem.

I think you and I both know what is normal. Tired eyes, you know, you
accept. But when things happen with no provocation and last a month at a
time, you know theres a problem.

Cya
Simon

Reply to this Message

John H. - 10 Dec 2006 11:39 GMT

> >> Im bewildered by the fact either a nice desktop lamp, OR a pair of
> >> sunglasses will help alleviate the problem! Maybe it's something to do
[quoted text clipped - 67 lines]
> and therefore type 2 diabetes. But that would I would hope be picked up
> on by routine blood test results.

Your doctor should think again, I have read that one symptom of
hepatitis C is blurred vision. Vision is very susceptible to general
physiological changes. Not saying you have hep c, just that liver
dysfunction can cause vision problems.

> > It is worth remembering that vision takes up lots of brain space. Any
> > global disruption of CNS function may likely impact on vision. For
[quoted text clipped - 64 lines]
> Yeah, Im rather curious when the docs just stood looking at my MRI
> pictures and mumbling about CSS ?? and Fatty Tissue around the orbit.

I can't recall the name but there is a condition that can cause
inflammation around the orbits and fatty tissue. I've wondered about
this too. The MRI may look like extra fatty tissue, it might be
inflammation, and if inflammatory mediators are entering the retina
itself there is a very high probability it will impact on vision.
nitric oxide can diffuse rapidly through membranes and is very often
released by il-1. MRI is not a picture, interpretation can be rather
difficult.

> > See, I'm that desperate that I just have to reach far and wide because
> > the medicos have long given up. I can accept that limitations of the
[quoted text clipped - 7 lines]
> Cya
> Simon

Reply to this Message

Simon Dean - 05 Dec 2006 23:42 GMT

> Join the club, have a similiar problem. The doctors don't know what is
> going on, the problem is intermittent and very frustrating. Just last
[quoted text clipped - 4 lines]
> this: does the problem occur with ongoing downward gaze, as in
> sustained reading?

You wanna know something weird too...

Sometimes, I can close my left eye, see blurry vision. Alternate and
close my right eye, see blurry vision. Open both eyes, see sharp vision.

I also know this aint just yer common or garden tired vision.

I can appreciate that text goes blurry, but I've never had the stuff
trying to jump off the page and beat me around the head.

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