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.
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.
– 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.
After recognising the return of some unwelcome signs, I thought it best to contact the doctor I’d most recently seen at the eye hospital. He said he could see me next week, as opposed to our planned appointment in 3 months time.
At the same time, the mother had offered to ring round a few private consultants (because I’m at work during the day, not because I’m a lazy ass) just in case they could offer something that the NHS could not. I don’t know how I feel about a private consultation. Aside from the cost of an investigation that may result from that, is there anything that they could do that NHS doctors couldn’t? I am only considering it as no one I’ve seen can seem to find anything to suggest what may be causing this. Since the first patches of vision I lost did not return, I don’t want to sit around waiting for it to happen again.
So on Saturday my friend and I decided to make use of our groupon deal and do the ‘High Ropes’ challenge. It was basically like the sort of obstacle course you find in a kids’ park (walking across logs, climbing through nets, etc.) except it was 40 feet up in the trees.
As we arrived, we found a single shed with a reception desk inside. I quickly regretted drinking that bottle of Vitamin Water on the way there and came to the unfortunate realisation that spending 3 hours balancing in the tree tops with a full bladder would not be the best of ideas, and therefore I’d have to make use of nature’s facilities in the 10 minutes we had before starting.
I quickly ran up the steep hill into the wooded area, but as I neared the top, the usual suspects struck again. The sudden onset of dizziness, followed by my left leg failing to lift when I asked it to, resulted in my chin becoming unexpectedly acquainted with the soil.
Picking myself up, I stumbled through the trees trying to spot a suitable area out of sight of the road beneath me and the paintballers over the hill. I couldn’t afford to be too picky, however, so I was forced to squat behind a tree and do the deed.
I probably should have realised though, that still being dizzy, I should have been careful when standing up again. But being in a rush, I jumped up, pants still around my ankles and almost immediately found myself back down on the ground, head in the dirt and my ass making a high-scoring paintball target for anyone who happened to be looking down from the hill above.
Needless to say, the rest of the day was rather more enjoyable than my first experiences and I’d recommend High Ropes to anyone!