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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Warning: This is a Rant…

I appreciate British healthcare and the NHS, I really do, but sometimes I think medical staff are forced to justify their actions to such an extent that patient wellbeing suffers unnecessarily.

For example, if I went to my GP with a stomach bug or a fever, they will happily hand out antibiotics without a formal diagnosis. They don’t pass you from specialist to specialist so that by the time you finally receive treatment the infection has spread to the rest of your body!

But this is not the case with all types of illnesses.. I am now on my 3rd ‘episode’ of whatever this is (see previous posts for details). I know with things like this they often tend to take a ‘wait and see’ approach and a lot of people are left in limbo for years during this time with no treatment.

In my case, although most of my symptoms largely ease after each episode, the damage to my visual field remains permanent. But the last episode lasted from May to October 2012. I just wish that a doctor was able to try treating me with something without a diagnosis. I have heard cases where GPs have handed out a single course of steroids without a diagnosis but this is not my experience.

I actually got upset at my opthalmologist appointment this morning due to the feeling of helplessness, to which he suggested I see my GP for ‘psychological help’. I don’t want that… Sorry for the rant.

I’ve become so numb, I can’t feel you there…

Well today I feel as if someone has injected a local anaesthetic into my fingertips and like it’s just wearing off and kind of tingly.

Have not felt this in a while. It makes typing on my phone interesting! Like walking when you have pins and needles, but not that painful. On that note, if anyone hasn’t seen Michael McIntyre’s show where he walks with pins and needles, I recommend it. Just reminded myself of it and now lolling away here 😀