There is an overview post which gives background and overview information, including my experiences with the NHS while trying to get my condition diagnosed. It can be found here.
Symptoms
About 6 months ago, I went to bed feeling perfectly normal, but woke up the following morning with my vision about 10-15% dimmer. This was a permanent change, and I did not see any improvement back to previous brightness levels.
There was some tiredness associated with this, but no other mental incapacity took place.
About every 1-2 weeks my brightness drops by probably 1-2% or so, from which there is no recovery, and over 6 months these drops have really started to add up.
I went through a milder version of this a few years ago, and in that case it just burnt itself out after a few months, resulting in my brightness levels stabilising even though they never recovered back to pre-illness levels. The cause was never diagnosed then either, and after the consultants refused to escalate it, I let it drop because it wasn't impacting my life at that time.
This time however, the intensity of this illness is much more severe and this stabilisation has not yet occurred.
My visual acuity has not really changed during this time, a fact which has been confirmed with a couple of optician eye tests.
This is a painless illness and in particular, there is no pain along the optic nerve.
I have noticed however when looking at, for example, faces on a LCD monitor or CRT television, that they appear somewhat washed out with fine detail lost in a uniform white, a problem which has got worse as the illness has progressed. However, I do not see this when looking at faces in the real world.
I am generally in excellent health apart from this vision problem.
Tests carried out
The following tests have been carried out:
Standard[1] blood tests are fully normal, apart from a lower than normal, but stable, platelet count.
A brain MRI was normal.
Visual evoked potentials and a ERG were both normal.
Eye pressures are normal.
Unchanged visual acuity has been confirmed by standard optician eye tests.
Some auto-antibodies have been tested for as part of the low platelet condition and so far the results have been negative.
A dilated examination of the eyes did not reveal anything.
I score perfectly on colour blindness tests.
[1] I suspect what is tested for in a standard blood test may vary by country, so I am talking about the tests which the NHS carry out as part of it's standard blood tests.
Thursday 14 January 2010
Overview (Please read first)
This post provides an overview of my situation. I have placed the symptoms and tests carried out to date into another post which can be found here.
I am facing a serious vision problem with my vision gradually getting dimmer by the week, but because standard tests have not revealed anything, I have basically been told by various NHS consultants to go away.
It seems that in a target driven NHS, patients who require more diagnosis efforts than normal (because their illnesses are unusual) are basically turned away unless their condition is so serious and immediate that it cannot be ignored.
Sooner or later, my condition will reach that stage, but by then it will be too late for me as eye conditions tend not to be reversible. However, many conditions, if diagnosed in time, can be managed or even stopped from getting worse.
I am asking for ideas (both in terms of suggested tests and possible causes) which people reading this may have. I cannot believe I am the only person on the planet to have experienced these symptoms.
Of course, in a normal healthcare system, a patient who presented with unusual and deteriorating symptoms which are now severe enough to impact their normal life, would be escalated rapidly up through the healthcare system until a cause had been found.
However, in the NHS, you get told to go away if the cause if not immediately obvious and if you demand further investigation, the consultants tell you they will not refer you for more tests on the part of the vision system they are responsible for[1], even after you have explained how this is now impacting your life and how the condition is continuing to deteriorate. Even when your local MP writes to them it has no real impact.
If you demand a appointment with another consultant, you get treated as a routine patient and not an urgent case, and get placed at the end of a waiting list and all the time, your condition is getting worse.
In other words, you are basically discarded by the NHS.
So, to anyone reading this blog, are you better than the NHS ?
Can you suggest a test or illness which the NHS has failed to consider ?
Can you help me save my vision (as the NHS does not seem to care) ?
Thank you for having taken the time to read this and I would really appreciate any ideas you may have.
[1] In the NHS, opthamologists are responsible for the front part of the vision system and neurologists are responsible for the back end of the vision system. However, there is no overall responsibility for the vision system as a whole, which has resulted in my getting bounced between two departments with everyone saying basically, "it's not my problem, please go away" and so nobody is willing to take the next steps required to find out what is wrong with me.
There are times when I wonder if NHS consultants are so focused on their targets that they are reluctant or even unwilling to deal with awkward to diagnose patients.
I am facing a serious vision problem with my vision gradually getting dimmer by the week, but because standard tests have not revealed anything, I have basically been told by various NHS consultants to go away.
It seems that in a target driven NHS, patients who require more diagnosis efforts than normal (because their illnesses are unusual) are basically turned away unless their condition is so serious and immediate that it cannot be ignored.
Sooner or later, my condition will reach that stage, but by then it will be too late for me as eye conditions tend not to be reversible. However, many conditions, if diagnosed in time, can be managed or even stopped from getting worse.
I am asking for ideas (both in terms of suggested tests and possible causes) which people reading this may have. I cannot believe I am the only person on the planet to have experienced these symptoms.
Of course, in a normal healthcare system, a patient who presented with unusual and deteriorating symptoms which are now severe enough to impact their normal life, would be escalated rapidly up through the healthcare system until a cause had been found.
However, in the NHS, you get told to go away if the cause if not immediately obvious and if you demand further investigation, the consultants tell you they will not refer you for more tests on the part of the vision system they are responsible for[1], even after you have explained how this is now impacting your life and how the condition is continuing to deteriorate. Even when your local MP writes to them it has no real impact.
If you demand a appointment with another consultant, you get treated as a routine patient and not an urgent case, and get placed at the end of a waiting list and all the time, your condition is getting worse.
In other words, you are basically discarded by the NHS.
So, to anyone reading this blog, are you better than the NHS ?
Can you suggest a test or illness which the NHS has failed to consider ?
Can you help me save my vision (as the NHS does not seem to care) ?
Thank you for having taken the time to read this and I would really appreciate any ideas you may have.
[1] In the NHS, opthamologists are responsible for the front part of the vision system and neurologists are responsible for the back end of the vision system. However, there is no overall responsibility for the vision system as a whole, which has resulted in my getting bounced between two departments with everyone saying basically, "it's not my problem, please go away" and so nobody is willing to take the next steps required to find out what is wrong with me.
There are times when I wonder if NHS consultants are so focused on their targets that they are reluctant or even unwilling to deal with awkward to diagnose patients.
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