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.

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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.

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.

Symptom Checker

I thought I would list all of my symptoms during an episode (in no particular order as this would over-complicate things) so that anyone experiencing similar issues, whether diagnosed or not, can compare to their own symptoms. I am interested to hear from anyone with similar symptoms! My first episode occurred towards the end of 2010 and lasted a few weeks and the second lasted several months (neither were treated). Some recent dizziness and numbness suggests a third episode may now be occurring. 

– Headaches, often triggered by sitting in certain positions such as slouching

– Dizziness

– Some sensation loss in the skin on certain parts of the body, never complete numbness

– Slight weakness and loss of coordination

– Loss of visual field in both eyes (this symptom did not resolve after each episode, unlike other symptoms)

– Feeling of pain or pressure behind the eyes, sometimes a sharp stabbing pain in the eye