If not keratokonus then what else?

General forum for the UK Keratoconus and self-help group members.

Click on the forum name, General Discussion Forum, above.

Moderators: Anne Klepacz, John Smith, Sweet

User avatar
Matthew_
Champion
Champion
Posts: 814
Joined: Thu 13 Jul 2006 3:13 pm
Keratoconus: Yes, I have KC
Vision: Graft(s) and contact lenses
Location: Gallafrey

Postby Matthew_ » Tue 15 May 2007 11:36 am

My brother has posteria Keratoconous. This means the irregularities take place at the rear of the cornea or in a layer below the surface. Because it is not the surface, it cannot be easily diagnosed or spotted by surface inspection. In fact it is quite hard to diagnose. The condition is also not a ammenable to use of hard lenses to correct. But on a more cheerful note it is not likely to be as severe, although this may depend on your viewpoint. I think I also have some of this as I experience severe photo-phobia, ghosting and multiple images. My left eye is now 6/120 but a corneagram gives me mild KC, and the right eye has barely detectable KC. My optom is more than a little suspicious that I have some of my brother's condition. I am up to 16 images now on my left eye (I counted the number of moons I could see a few weeks ago) and just a double image on the right.
Maybe this needs investigating for you?
Image

Get a life...get a dog!

User avatar
Luca
Contributor
Contributor
Posts: 21
Joined: Sun 13 May 2007 1:31 pm
Keratoconus: No, I don't suffer from KC
Vision: Spectacles
Location: Austria

Postby Luca » Tue 15 May 2007 1:09 pm

Very interesting, thanks for sharing that.
I still get to 100% with my glasses. I will mention this to my doc IF my condition gets worse.

I would like to sum up my symptoms one more time in more detail:

1.Dry Eye (I take up to 8 drops of something called HYLO Comod here in Austria which basically is there to make the eye more humid, I don't know the correct english terminology for this).

2.Every 3 months I would need new glasses past 2 years. (Astigmatism does NOT increase) But farsightness would lower more short sighted I had 2,25 on the right eye now 1.25!

3.Driving at night is annoying all lights seem disturbing, traffic lights would have this beam of its current colour in a downward direction. So do normal car headlights I mean they always do a little bit but I see a very large beam.
I also have this sort of glary effect when watching TV in a dark room.

4. Shadowed semi-transparent double vision but mostly just on dark backgrounds. Mostly short distances... (I will check the Moon today if it is visible).

5.If I open my eyes very wide the double vision becomes much worse! When I look up but with my head sort of down I have no double vision what so ever. I hope I dont fail at explaining myself, you know when people look over their reading glasses when I make that kind of face and look like that the double vision is gone.

Once again thank you guys for your attention!

Oh and last but not least I have Astma and many allergies!! Never had a problem with my eyes before though.

User avatar
Andrew MacLean
Moderator
Moderator
Posts: 7704
Joined: Thu 15 Jan 2004 8:01 pm
Keratoconus: Yes, I have KC
Vision: Other
Location: Scotland

Postby Andrew MacLean » Tue 15 May 2007 1:19 pm

HYLO-comod is basically a preservative free artificial tear:

HYLO-COMOD®
Eye drops for moistening the eye surface.
You assist nature with HYLO-COMOD eye drops by strengthening your tear film with hyaluronic acid.

As you know, less is often more.
This is especially the case for HYLO-COMOD. With the new supply and dosing system COMOD you can conveniently have 300 seperated dose units in a single bottle to carry around. Without preservatives, because HYLO-COMOD is the only multi dose preparation of this kind without preservatives on the German market.


I was wondering, Luca, whether you have been checked for a cataract? I remember when mine started to develop, night driving became a bit of a problem as oncoming lights were surrounded by a ring of similar lights. In many ways this was like starting all over again with keratoconus, but since I had my implant (this was done three and a half years after a transplant into the same eye) I can see very well, both in daylight and at night.

Ich wünsche Sie gut

Andrew
Andrew MacLean

User avatar
Luca
Contributor
Contributor
Posts: 21
Joined: Sun 13 May 2007 1:31 pm
Keratoconus: No, I don't suffer from KC
Vision: Spectacles
Location: Austria

Postby Luca » Tue 15 May 2007 2:13 pm

I don't know to be honest, they did the topography of the cornea and then widened the pupils with these drops to have a look at the eye "background" Hintergrund as they call it here.

After everything I was told that it is not keratokonus and there is no reason to suspect anything else, errr maybe you have the double vision from the dry eye? errr well however, go home and maybe err tomorrow its gone or else you come back when this developes further.

They simply don't know.

I guess thats what I will do.. wait..

User avatar
Matthew_
Champion
Champion
Posts: 814
Joined: Thu 13 Jul 2006 3:13 pm
Keratoconus: Yes, I have KC
Vision: Graft(s) and contact lenses
Location: Gallafrey

Postby Matthew_ » Tue 15 May 2007 3:50 pm

All very puzzling. I wish you the very best of luck in resolving the issue.
You probably shouldn't stare at the moon too much, I case you are diagnosed with Lycanthropy (ie as a were-wolf)!
Image

Get a life...get a dog!

User avatar
Luca
Contributor
Contributor
Posts: 21
Joined: Sun 13 May 2007 1:31 pm
Keratoconus: No, I don't suffer from KC
Vision: Spectacles
Location: Austria

Postby Luca » Tue 29 May 2007 11:47 pm

I wonder if a transformation to a were-wolf would mean a temporary solution to KC...

Now when walking along outside at night e.g from the cinema to the pub besides all the annoying light effects my eyes would start to water like crazy ! Which is nice at first because my eyes are usually very dry but this quickly becomes very annoying, people would look at me and say mate are you crying?!

Do any of you have this?

User avatar
DJ Smak
Contributor
Contributor
Posts: 45
Joined: Fri 14 Oct 2005 11:36 pm
Location: Canada

Postby DJ Smak » Sat 02 Jun 2007 9:53 pm

I would suggest that you see your eye doctor and ask about PMD, Pellucid Marginal Degeneration. Your symptoms are almost exactly what I went through. The same age range (which is the average time when it becomes noticeable), the halos etc, that is all that i experienced as well. I was originally diagnosed with KC, but a few years later they told me it wasn't KC, rather it was PMD.

User avatar
Pat A
Forum Stalwart
Forum Stalwart
Posts: 661
Joined: Fri 08 Dec 2006 9:42 pm
Keratoconus: No, I don't suffer from KC
Vision: Contact lenses
Location: Herts

Postby Pat A » Sun 03 Jun 2007 9:44 am

DJ
I cannot thank you enough for taking the trouble to make your post above. After the events of Friday as recorded on another post this has given me something to focus on. My symptoms are very similar to Luca's too (I've even tried the looking down and up thing!) and whilst I am most definitely NOT self diagnosing myself as having PMD at least you have shown that there are other conditions which display similar symptoms to KC to explore - and I am not going mad!
All I want from the medics is a proper diagnosis so that I know what I am dealing with and can learn how to best manage it.
Thanks again.
Pat

We do not stop playing because we grow old;
We grow old because we stop playing.

User avatar
DJ Smak
Contributor
Contributor
Posts: 45
Joined: Fri 14 Oct 2005 11:36 pm
Location: Canada

Postby DJ Smak » Mon 04 Jun 2007 12:52 am

the thing with PMD is that it's apparently even more rare than KC. A google search alone on pellucid marginal degeneration only garners about 23,000 hits compared to KC which has like 420,000. I tell ya, i was disheartened enough to hear that i had KC originally, but to then tell me that i had something else was even more disheartening.

http://www.lensdesign.ca/pmd.htm

Thats probably the best description on PMD

compared to KC

http://www.lensdesign.ca/keratoconus.htm

On a side note, i haven't noticed a change in my eyes for the past year, but recently, my vision has started to go again. I was hoping that since i am almost 30 that things would have stopped, but it seems that my luck as usual is only bad. It really is depressing and hits you hard.

User avatar
GarethB
Ambassador
Ambassador
Posts: 4920
Joined: Sat 21 Aug 2004 3:31 pm
Keratoconus: Yes, I have KC
Vision: Graft(s) and contact lenses
Location: Warwickshire

Postby GarethB » Mon 04 Jun 2007 7:19 am

No one can say that KC will stabilise with time, such things are purely anecdotal.

I have had 2 grafts, nearly 20 years old and KC canme back but has been stable for 3 years. ou just take every day as it comes and adapt as things progress.

Oh and I am nearly 40!

As for google hits for KC, having had a quiock look, a fair number of those hits point to this web site :lol:
Gareth


Return to “General Discussion Forum”

Who is online

Users browsing this forum: No registered users and 8 guests