Could this be KC?

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someo559
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Could this be KC?

Postby someo559 » Tue 24 Oct 2017 7:17 am

Hi to everyone,

First of all, sorry for a long post. The reason i am writing this is that i have these very weird visual symptoms (loads of them) and im afraid i might have KC. However, im beginning to think that this is neurological, but i would like to get someones opinion on that who knows KC from personal experience or otherwise, because i am not sure how quickly i can get to an eye doctor and whether i should ask the doctor referring me to the eye doctor to also get an MRI of me. I would like to also know how urgent it is to get treatment if you suspect that i might have KC, since i theoretically could go to an eye doctor in a week but then ill probably have to pay 500€ for the first visit, and i would not like to bankrupt my parents.

I recently noticed that i had developed very mild bilateral monocular diplopia. I have no idea when it started or whether i have always had it, but i noticed it for the first time about a year a go. However, now that i started paying more attention to it, i noticed that i actually dont see two images but rather loads of "ghost images", that are mostly on top of each other, even though when i look at certain type lights, like the emergency flasher -button on a car dashboard (happened to be a lit one), yeasterday i noticed that i could distinguish at least eight different images! And there seemed to be even more of them on top of each other.

However, this is where it gets weird, i mean when i first looked at the flasher, i think i could see two images max. But when i started staring at it, they started multiplying. Not even in a split second, it took at least several seconds, maybe more, for it to multiply to eight or more images. Also, i was looking at it from an angle (from the side), so some of the copies were not completely in a straight line, but when looking straight at it and not from an angle, they always are either above or below the object, which i think is different from the images i have seen that are at least supposed to show what bright likes could look like in KC.
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Also, i normally see max two images initially and the ghost image is so vague that it took me at least a year (or maybe my whole life) before i realized something was wrong. But again, depending on the object im looking at and the lighting, background etc, the ghost images may start multiplying, or it is also possible that there seems to be only one ghost image, but that it appears above the object instead of under the object, where it usually appears. Usually it looks like letters have extra shadows etc, but sometimes (rarely tough) the double image can become completely detached from the original image, at least when looking at text on a screen. There is absolutely no way to determine when this will happen.

Also, if i see the text on my phone double or multiple, this doenst always or even usually mean that i would see the phone double. Or that i would see everything double either. I have also noticed that same objects or letters do not always multiply in the same way, and may not multiply even at all, and that for example when i now look at my computer screen the text seems mildly double, but when try to read text from my phone, then it is not doubled.

I have no clue as to what this is. I have noticed that i have mild illusionary palinopsia and the ghost images are pretty much exactly as transparent as my visual trails. Also, certain lighting conditions that make the ghost images stand out also make the trails stand out. I have heard from cerebral polyopia, but i read somewhere that in that case the images shouldnt overlap? Theres so little information on cerebral polyopia that its probably impossible to tell, but i hope that the doctor i see tomorrow can tell something about this and refers me to an eye doctor. I just dont know how fast i will get the appointment with they eye doctor through the public health services...

So any idea on whether this could be KC? I also have loads of other symptoms like halos and starbursts around lights, but then again i know for a fact that i have always had them. My vision is also generally OK, my ability to recognize letters at a distance might have been slightly reduced from what it was, but it seems to be the visual snow that prevents me from seeing, not the blurriness. Also strangely, the polyopia doesnt seem to have any effect in my ability to see at all, and as i kind of described, at least most of the time the images seem to be multiplying only when i stare at something.

I have never needed glasses and have no problems functioning when it comes to my vision. I have never had an injury to my eye. i do have neurological symptoms like illusory palinopsia, visual snow and severe migraines, and a history of at least five concussions. My MRI was normal though when we took it three years a go, but from what i hear only severe injuries show up on regular MRI.

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Anne Klepacz
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Re: Could this be KC?

Postby Anne Klepacz » Wed 25 Oct 2017 10:01 am

Hi Someo559,
Yes, this could be KC, but then again, your symptoms could have a different cause. Only an eye doctor actually examining your eyes would be able to tell you one way or another.
KC usually progresses pretty slowly. Collagen crosslinking (CXL) is designed to stop the progression and rigid contact lenses improve the vision. Here in the UK, CXL is only offered on the NHS when there has been evidence of progression over 6 months so a diagnosis isn't 'urgent' apart from your peace of mind in knowing what's going on.
All the best.

someo559
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Re: Could this be KC?

Postby someo559 » Wed 25 Oct 2017 4:04 pm

Thanks for the reply. I saw a doctor today who also happens to be a neurologists and he said that he thinks that KC is a possibility. He referred me to an eye doctor but said that there is no telling when i get the appointment. He also said that if it takes more than a couple of months we will do the MRI before that. If i get to the eye doctor in the near future then we will probably also do the MRI if it seems that the problem is not in the eyes. However, he also said that a minor injury to the visual cortex might not show up on any type of scan that is considered reliable enough for a diagnosis, as i speculated. It is also possible that this has something to do with migraines as i have all sorts of weird neurological symptoms during my migraines, and even though the headaches never get unbearable, the migraines are very severe as i once had one that lasted for a week and i most likely have what is called the "Alice in the Wonderland Syndrome", which probably is an indication that the neurological effects are very severe in my case. Actually the neurological symptoms are so weird that i first thought i was having epilepsy when the migraines got worse, i even once completely lost my vision and the doctor said he thinks it was migraine episode.

Regardless, i will be seeing the doctor regularly to observe how this develops. I just have to hope that this is just something neurological that wont get any worse, but i guess KC is somewhat treatable nowadays so its not a death sentence and better than having MS.

I have to ask though (even though its kind of pointless since only an eye doctor can tell what is the status of my eyes), does KC usually begin with worsening of the vision to the level where you actually need glasses (as i read somewhere), or can it begin with polyopia? As i said, my vision is OK at any distance. I can also remember seeing double a year a go, but i didnt pay any attention to it, which would point into the direction that it was not the first time i was having polyopia (i have no idea when it started, but i remember i have never liked to stare at things for too long because they can start looking weird, even though i dont have a completely clear memory of seeing a ghost image). Also, how fast does the disease worsen once it gets to the point where you clearly have polyopia, or is it completely individual? I would think that if i have KC it is not developing very fast, because as i said, i didnt notice any changes in my vision before i started to question my other visual symptoms a week a go and realized i have polyopia when i started to pay attention to what i was actually seeing.

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Anne Klepacz
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Keratoconus: Yes, I have KC
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Re: Could this be KC?

Postby Anne Klepacz » Thu 26 Oct 2017 10:58 am

KC is very individual, so I don't think there are any rules about how it starts, and none about how it will progress. I was already wearing rigid contact lenses for what I thought was just short sight when I was diagnosed. And the first things I noticed were some double vision in certain lighting conditions, and some of the effects around lights that you describe. With KC, one eye is usually affected more than the other, so a lot of doubling and multiple images are to do with the brain finding it difficult to focus the different images that come from each eye.
If you do turn out to have KC, then as you say, there's a lot that can be done for it these days and there's a lot worse conditions to have!
All the best and let us know how you get on.

someo559
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Re: Could this be KC?

Postby someo559 » Thu 26 Oct 2017 4:02 pm

I have to say i hate this uncertainty. I bet that if i have to wait for six months to see the eye doctor it'll be relief to get the KC diagnosis, compared to the uncertainty of not knowing whether ill lose my vision or die from brain cancer :D This situation is kind of worrying not the least because it at least feels like the symptoms are rapidly worsening. It might be just the fact that im paying more attention to what im seeing, but there are very clear indications that at least the visual snow and illusory palinopsia are worsening (it also feels like the polyopia is worsening, but i dont have enough observations to know for sure), I think i used to be able to distinguish around eight copies of my finger at this lighting when i waved it around, but i just counted something like 15 of them. Also, the snow visual snow (static that turns out to be snow flakes when i focus on it) is flowing so rapidly that its become almost impossible to distinguish the individual snow flakes. Again, this just might be because of the migraines i have had today and yesterday, i had some otherwise mild migraines, but i had some new visual symptoms. And lol, now that im writing this i just got new migraine :D I just have to hope that migraines are the cause of all this, because thats the easiest problem to live with. And actually statistically speaking, since i have severe migraines with all sorts of visual symptoms, the most likely cause for my polyopia is the migraines. I mean, it is a de facto cause of cerebral polyopia, even though it is rare, but it is very well documented.

By the way lol, now everything is distorted and the colors are changing :D And i feel like throwing up. I have a feeling the migraines could explain something (maybe not everything though) because some of the symptoms i have had in the last three migraines are completely new and dont feel like they have anything to do with the eyes or other neurological symptoms. Im also apparently having symptoms i havent had for a couple of years, including but not limited to the changes in perception depth and the perception of body. Also, i took a very effective beta-blocker earlier today and this is the second migraine im having today despite of the medication that at least used to be very effective.

I would like to know though, out of curiosity, do the visual symptoms in KC, in your case for example, follow some kind of logic, or are they completely unpredictable? And do objects usually multiply slowly or immediately? For me, sometimes they seem to multiply very fast but sometimes i have to stare at the object for something like 30 seconds before it multiplies. And sometimes they might never multiply. Or they might double at least almost immediately but it can take at least several seconds before it multiplies further.

Anyway, thanks for giving me information about KC and being of help. Its nice to at least get to write about these symptoms, writing about stuff makes it usually more clear in the mind.

someo559
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Re: Could this be KC?

Postby someo559 » Thu 26 Oct 2017 6:06 pm

Okay, so the palinopsia/visual trails just got somehow different. Or i mean, for some reason i cannot comprehend, the the copy of my finger at where the motion of the finger stops (sorry if im not making any sense, i have a migraine and im not a native English speaker) is now the same intensity as the real finger, instead of being almost completely transparent. The copy also appears in all lighting conditions, not only in ones where i normally see trails. The other copies also seem to be less transparent than before, although it might be just the general change in colors. Also, i generally feel like im gonna go insane and i feel extremely nauseous (havent thrown up yet though). Dont remember the last time i felt this horrible due to a migraine.

Also the polyopia seems somehow different. Everything that "likes" to multiply is multiplying if i stare at it and the copies might maybe be more vivid than before. However again, everything is not multiplying even if i stare at it.

Just have to hope that i wake up alive tomorrow. This wouldnt be funny at all but because i have nearly died twice during the 20 years of life im mostly just laughing right now.

PS: Ill report on my status if there are some changes to let you guys know if didnt die from a stroke :D

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Anne Klepacz
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Keratoconus: Yes, I have KC
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Re: Could this be KC?

Postby Anne Klepacz » Sat 28 Oct 2017 9:27 am

Your migraines sound dreadful - I hope you're talking to your doctor about them and whether there's anything that can give you relief from those symptoms. And while some of the other symptoms you have could be KC, there are others like the 'visual snow' that don't sound like KC, at least in my experience. I do hope you don't have to wait too long to see specialists to find out what's going on and hopefully some solutions.

someo559
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Re: Could this be KC?

Postby someo559 » Sun 29 Oct 2017 11:07 am

Thanks for the reply. Im still alive. However, the polyopia is getting totally out of control. Say i look at the subtitles in tv, i can see something like eight copies of the text! Now almost everything is multiplying and some type of lights (not all though, which is odd) multiply at least almost immediately and when i stare at it, there is no way to even try to count how many copies there are.

Oddly, otherwise there has been no change in my vision. Even my night vision is completely normal.

How urgent is it to get to the eye doctor if my polyopia is worsening this fast? I mean, it has gone from barely noticeable to almost totally insane in a week.

Im going to insist on seeing the doctor/neurologist on wednesday and i think we might be able to do the MRI pretty quickly, but again, there is no telling when i get to see the eye doctor. I have to admit i have a feeling this is totally not going to end well in any cause. Even with the migraines, those visual effects that dont disappear immediately after the episode ends seem to always be more or less permanent

someo559
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Re: Could this be KC?

Postby someo559 » Sun 29 Oct 2017 1:11 pm

Okay a little update, the polyopia literally went from seeing 40 copies of certain type of traffic lights to seeing the same traffic lights almost normally in an hour! However, it seems to have at least partially returned and im having these really weird neurological symptoms. Also my tinnitus got so bad i can barely hear my thoughts, thats definitely not an eye issue.

I have to ask, do these fluctuations occur in KC? And can KC progress from barely noticeable polyopia to seeing 40 copies of a light source in a week, while there are no reductions in night vision or visual acuity? Or is it again all individual? Also, is there a risk of serious permanent damage if it takes say two months to see the eye doctor?

Anyway, im going to insist that we take the MRI when i meet with the doctor on Wednesday I dont have any symptoms of a tumor (luckily), but im beginning to see that i do have a lot of the early symptoms of MS, like dizziness (have had that for months), muscle stiffness (not a new thing but seems to be worsening) and hand tremors and occasional problems with hand coordination. Anyway, the MRI can rule out all brain issues except migraines and minor injuries. Unfortunately it doesnt work with the eye stuff, and it'll probably take time to get to the eye doctor, as i have mentioned.

someo559
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Re: Could this be KC?

Postby someo559 » Sun 05 Nov 2017 7:23 pm

Okay i dont think i have KC. Im still going to see the eye doctor and the estimate is that it'll take three months. My neurologist explained that he always thought that it was unlikely that the problem was in my eyes because the symptoms were fluctuating etc. and that he believed that the polyopia was induced by migraines.

However, im now beginning to be fairly confident that i actually have MS :D A week a go i started to develop these weird symptoms like suddenly losing most of the muscle strength in my legs. Thats not a solid indication of MS, but later the muscle weakness started to be right-sided (the right leg is so weak now that i can barely walk normally, and i used to be in good shape) and i started to develop this tingling in my hands and feet, and now that has gotten very intense and the hands and the feet have also started go numb. I also have loads of other issues that point towards MS. The MRI is scheduled for next Thursday and it will reveal whether i have MS or not, but with these symptoms getting progressively worse and worse, i think im screwed either way :D


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