Medically Unexplained Vision Loss: A Self-Reported Analysis

Summary of symptoms (from most to least distressing)
– Permanent bilateral stationary blind patches in vision
– Episodes of skin numbness lasting for up to 21 days
– Light-headedness; ranging from mild to collapse
– Generalised anxiety and OCD symptoms
– Visual Snow: Constant static-like visual disturbance, accompanied by mild palinopsia, BFEP, and night-blindness
– Symptoms of low blood pressure: Readings taken by medical professionals and self ranging from 94/56 to normal, frequent visual fading upon standing, weakness (particularly before eating)
– Severe headaches, approx. every 2 months (least distressing as largely treatable with multiple painkillers, but leaves me feeling groggy and heavy-headed)

Timeline of Symptoms
– Anxiety/OCD (always)
– Headaches (c.2003-Present)
– Visual Snow (2005-Present)
– Light-headedness (2010-Present, no longer severe)
– Numbness (2012-2013)
– Scotoma (2012-Present)
– Low BP (2012-Present, to best of knowledge)

Medical Visits and Tests
– GP visit re: Light-headedness (2010). No further investigation.
– GP visit re: Light-headedness (2011). Tachycardia observed and issued with 24-hour heart monitor. Some slight abnormalities observed but no further investigation.
– GP visit re: Arm numbness (May 2012). Reassured of likelihood of trapped nerve. No further investigation.
– GP visit re: Persistent and spreading numbness (April 2012). Placed on neurologist waiting list.
– GP visit re: Scotoma (June 2012). Sent to Eye Hospital for examination. Broad-range field test (normal), central field test (several missing patches observed). Eye examination (normal). Told to wait for neurology appointment.
– Admitted to hospital following leg weakness and reduced sensation in leg and foot (July 2012). BP (low), MRI/MRV (normal), spinal fluid pressure (normal), blood content (normal), eye exam (normal). Fever following lumbar puncture lasting 24 hours. Discharged the following day with scheduled Visual Evoked Potential and Fluorescein Angiography.
– Visual Evoked Potential (September 2012). Normal.
– Fluorescein Angiography (October 2012). Some abormality at side in both eyes but informed that this would not cause the symptoms described.
– Follow-up appointments (2012-2013). No observed progression of symptoms so discharged from care.
– GP visit re: Anxiety (2014). Prescribed Sertraline. Significant improvement in mental state but no improvement in previously-described symptoms.

The weird symptoms of a VSer

Okay so to most people visual snow is a weird enough symptom/syndrome in itself. But within the Visual Snow Facebook group and forum, I often notice the description of symptoms I did not know were possible even for a VSer.

VSers are united by their symptom of TV-like static in the visual field. It may or may not be more noticeable under different light levels, or times of day, but most VSers have this symptom 24/7. It can even be seen with closed eyes.

Goadsby and Schankin have recently published research suggesting that visual snow sufferers experience hypermetabolism in the lingual gyrus of the brain. However, this is merely a correlation and does not identify a cause. Further research is expected to commence in the near future, once the fundraising target has been raised.

There is currently no known treatment for visual snow; however the static is often not the only, and sometimes not the most debilitating symptom suffered by VSers. Symptoms commonly suffered by VSers are tinnitus, brain fog, derealisation/depersonalisation, fatigue, and anxiety. However it is not uncommon to see symptoms previously unheard of, even by your average VSer, described by member of the group.

The opportunity for sufferers to talk with others about their symptoms is of course largely a therapeutic experience, especially for sufferers of such a rare condition, many of whom have had negative experiences with members of the medical profession that haven’t heard of the syndrome before. However, ‘symptom sharing’ may also pose a potential psychological problem because of one influence. The power of suggestion.

Sufferers may read the description of another member and, realising they share a specific symptom, be able to eventually put a name to their symptom. But alternatively, it may cause a sufferer to realise the possibility that a symptom exists, which they may then dwell on, and self-analysis of an already anxious individual can lead to all kinds of stress.

I personally recommend ignoring posts that you know will not be useful to you. Discovering the similar plight of another may be comforting, but reading  about all the possible things that can go wrong in the human body may induce extra worry that not even a healthy person needs.

Video: Visual Snow for Beginners

Visual Snow for Beginners: http://youtu.be/0V-XFbah0LM

For anyone who read my post on this topic, this video may help to summarise that information a little better.

For those that haven’t heard of this condition, I would be grateful if you could spend a few minutes of your time to familiarise yourself with it. The more people that know about it, the better. It’s about time that people could discuss their symptoms with their doctor, without receiving a look of bewilderment. Thank you.

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.

Uncertain about uncertainty

I have recently realised that there must be a lot of people out there who also have to deal with uncertainty.

It is a difficult feeling to deal with. It affects all aspects of life, because it affects goal-setting, and most things in life require a goal to be successful.

For those dealing with uncertainty, you are forced to choose between setting goals which may not be achieveable, and then the feeling of disappointment, if not also financial loss, if they cannot be achieved; or not setting goals in the first place, which can lead to a feeling of unfulfillment.

Most of those dealing with uncertainty can probably look back at a time in their life that was filled with ambition and plans, and wish that they had put more effort into reaching those ambitions at a time when they could. Because now they are filled with motivation but they have nowhere to put it.

So when you are planning your holiday next year, or choosing which university to attend, remember to reach for your dreams now, because you never know when uncertainty is around the corner.

Chiari I Malformation

Ok I would LOVE to get a comment from anyone who has this or knows something about it. Could it cause the following symptoms? And could it be missed on an MRI that was only briefly looked at by a neurologist, and then all of my doctors since then have just seen the report basically saying “everything is fine”? Thanks in advance.

Symptoms are:
– Headache in base of skull and pulling sensation when sitting in certain positions
– Increasing number of blind spots in vision, which never get better
– ‘Snowy’ vision since a teenager (but worsening), particularly in dim light. It is hard to explain this to someone who doesn’t experience it, but basically a little like bad TV signal or white noise
– Occasional skin numbness
– Dizziness and slightly impaired balance
– Weakness, particularly during/after exercise
– Heart palpitations and sometimes faint heartbeat
– Poor circulation to hands and feet

The worst part is obviously the blind spots in my vision because the lost vision shows no sign of returning. I have had all tests under the sun and the field of vision test is the only thing that actually allows doctors to believe I have a problem, but they say they can’t see anything wrong when they look into my eyes.

I had a lumbar puncture last year and the doctor said the CSF pressure was normal at that time (I was in hospital as an in-patient at the time), which stumps me even more.

Thanks.