Update

I haven’t posted for a while but I found this Wikipedia page (I have no clue why I’ve never come across it before) that describes perfectly the symptom I have had since I was a teenager (perhaps 14 or 15 years old). 

http://en.wikipedia.org/wiki/Visual_snow

I don’t remember whether I suddenly noticed this, or whether it appeared one eye at a time or in both eyes at the same time. I do remember that shortly after this first appeared, I experienced a complete distortion of vision, which only lasted a few hours. again, I can’t remember whether that was in one or both eyes, but it scared me so much that I went straight to bed. When I woke up in the morning, my vision had returned (although still snowy, of course).

I didn’t really worry too much about my snowy vision until the onset of my other symptoms 17 months ago. These started with numbness on the left side of my body, which spread over the course of several days (eventually including parts of my right side too), and lasted for several weeks before the sensation returned to normal. In my case, by ‘numbness’ I mean loss of sensation in the skin. I always retained full movement and control of affected limbs, i.e. the structures underneath the skin were not affected. 

During the period of numbness, I also began to suffer some other symptoms; heart palpitations and chest pain, dizziness/light-headedness, shortly followed by the appearance of blind spots in my vision. 

The blind spots started in my left eye and over the space of several days also spread to my right eye. They are situated around my central vision, but not in my central vision. They are in difference places in each eye, and only a couple of them overlap so that they are noticeable with both eyes open (the others are compensated for by the other eye). 

When the blind spots appeared, the ‘snow’ in my vision also got worse, and my eyes began to have more ‘memory’. The visual symptoms have never improved since their onset (but according to my ophthalmologist their is some amount of variation between appointments in my visual field results), but the snow and visual memory are made more manageable by avoiding dimly-lit rooms where possible.

Other symptoms I have also noticed during the past couple of years are: severe lethargy mid-afternoon; an inability to understand instructions or ideas, as well as written information (this is made worse by the visual problems); an increase in forgetfulness. 

I have never received a diagnosis for my symptoms, and my ophthalmologist has hinted that I shouldn’t get my hopes up. Examinations of my eyes have never shown up any problems, and neither did the MRI or lumbar puncture that I had last year.

I am looking to meet people that have similar symptoms so that we can share ideas and experiences. My ophthalmologist and the neurologists I have seen struggle to make sense of the symptoms I am describing to them, so other sources of information would also be gratefully received.

Annoying the Doctors

If you’re in a position similar to me, where your symptoms are so obscure and test results so inconclusive that you’re stuck in a frustrating limbo, you can begin to think that you might be an annoyance to the doctors that you visit. 

They know that they do not currently have the answer and have run out of tests which may be useful in narrowing down the possibilities. They begin to suggest things like “seeing your GP for psychological help to deal with the uncertainty”, which angers you because you would rather deal with the root cause.

They appear optimistic without reason, suggesting that one day you may wake up with your vision restored and all of your symptoms will miraculously disappear; you know this is very unlikely. 

They suggest that you “try not to think about it”; you know this is impossible when it impairs your every day life and parts of your visual field is obstructed by shimmery blind spots 24/7. (Imagine having a piece of dirt or a fly stuck to your glasses and not being able to wipe it off.)

They ask what you think the problem is. This angers you because you know from past experience that they tend to shoot down any ideas you suggest, saying it is very unlikely. But in fact, it is likely that whatever you have is very unlikely! 

New doctors that you see don’t read your notes properly and say all of the problems are caused by anxiety or depression. Clearly not. 

I have nothing against doctors at all. I have very rarely encountered a doctor that didn’t want to listen. It is just difficult seeing doctor after doctor when they don’t really understand how you feel and cannot to anything to help. Also, having to hold back the frustration so that they don’t mind seeing you again. 

More specifically for young people, it affects all aspects of your thoughts about the future. You want to imagine being old and retired, playing with your grandchildren, gardening… (and I don’t even flipping like gardening!) but in reality you don’t know if all these things are possible because even right now these things would often be difficult, in your mid-twenties, with the symptoms you’re having and you don’t know what is causing it. 

You worry about finding a partner who won’t be put off by your medical problems and, although it is easy to sit at your laptop and chat with people on dating sites at times when you’re feeling tired or unwell, it is less easy to get out there and meet people. 

After writing all of these thoughts down, I can see why a doctor may suggest psychological help! But in fact, it is not depression preventing me live a normal life, but physical symptoms. Inside my mind I want to run about and keep busy like I used to, but I know if I do this then it will ruin the rest of the day so it is often best to save energy. So instead I sit here and write this…