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.

US Visa Application and undiagnosed neuro symptoms?!

Ok… so it’s been a while since I posted on here… Sorry about that! I was discharged from the hospital care a while ago in terms of my VS and other neuro symptoms (all of which remain undiagnosed) and I’ve been caught up with my (hopefully) upcoming move to the US to marry my beautful fiancee ❤ Please visit our blog (http://www.katieandjen.wordpress.com for more information, or follow us @katieandjen 😀 )

Thankfully I don’t have anything new to report in terms of symptoms, but I have found myself in a new situation that has led me to post here again. Before I have my Visa interview in London, I have to attend a medical examination by the US Embassy’s designated doctors’ surgery.

The purpose of this is to assess your physical and psychological state to determine if you’re fully functional and able to work, and therefore unlikely to become a burden to US taxpayers, as well as to ensure you’re not going to bring any communicable disease with you. This is fairly straightforward; but before you attend the medical exam, you’re required to fill out a questionnaire about your health.

One of the questions is “Have you ever been investigated or treated for a serious illness?” (Wording may not be exactly the same but essentially the same meaning.)

Well, April 2012 is when my blind spots first developed. I was investigated for all sorts that year, and was also admitted into hospital for several days at one point for further testing. (I want to point out that to this day I have no idea whether or not the blind spots are related to my VS, which I developed as a teenager.)

At that time, I had no idea my future self would be applying for a US Visa, and naturally a diagnosis was at the forefront of my mind. However, it now leaves me trying to explain a fat wodge of medical notes (well actually a lack of them, as it is too expensive to get them all printed!) that do not lead to a diagnosis. It is great, of course, that the doctors dug as deep as they reasonably could into my health and didn’t find anything serious; however they did, at the time, find scotoma in my vision, which was never explained.

This leaves me with the only option of trying to prove that my undiagnosed symptoms will not prevent me from working in the US. As I have no diagnosis to give them an estimate of my future health, I can only get a letter from my doctor stating that I am fit and able to work, and perhaps also my employer stating that the only extended sick leave I have taken was during my stay in hospital.

I will keep you posted with how it goes and any new information that comes to light. Bye for now.

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.

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…