My current condition and diagnosis situation

As promised, here is a condition update and the current diagnosis status. Sorry for not posting earlier, but before posting I wanted to be sure what I post below was accurate.

For anyone seeing this post in isolation, you can find an overview here and my symptoms here.

Overview

I have a mixture of good and bad news.

On the good side, although there's still no end in sight, over the last few weeks the rate of decline appears to have finally started to slow down, just like last time. If the illness behaves the same as last time, my vision will hopefully continue to get dimmer at a slower and slower rate until it stabilises. Unfortunately, I am not expecting any actual recovery in brightness levels, but right now, I will settle for a stabilisation.

On the bad side, I am still dealing with consultants who either claim outright there isn't a problem, or who make a diagnosis and when asked by myself to explain how the symptoms fit into their diagnosis, basically just repeat the diagnosis without providing an answer to my questions.

Examining the latest diagnosis

Let me spend some time discussing the latest diagnosis with you to show the kind of things I am having to deal with and to give you an example of what I mean in the previous paragraph.

If anyone reading this is in a similar situation, with consultants giving you a diagnosis which does not match your symptoms, hopefully you will then realise you are not alone.

The opinion offered by the latest consultant is that my dimness is been caused by the early stages of a cataract. This opinion, which BTW has never been suggested by anyone else, was offered based on the fact the consultant detected the very early precursor stages of cataract formation in my right eye and (to a lesser extent) in my left eye.

Let me start by saying that after everything else I have been worrying about could be the cause, I would really love for the diagnosis to be this simple. Think about it: when the problem got bad enough I could have a simple operation and my vision could be instantly restored. It would literally be a dream come true.

There's just one problem - the diagnosis doesn't fit the symptoms and when I attempted to discuss this, the consultant just started repeating his diagnosis without explaining how the symptoms I mentioned are consistant with his diagnosis.

My immediate questions to the consultant in response to this diagnosis were:

• Please explain how the dimness is absolutely identical in both eyes when you have identified the right eye as having more precursor activity than the left eye.


• Please explain how a cataract would be responsible for a sudden, incremental, and identical increase in dimness in both eyes at the same time.


• A new drop in brightness level tends to be accompanied by a feeling of lethargy. The initial drop was accompanied by lethargy strong enough to be debilitating for a few days. Please explain how a cataract could do this.


• There has been no drop in my visual acuity since this latest incident started in July. This has been confirmed multiple times by multiple people. Given that there has been a big drop in brightness levels since that time and given that a classic sign of cataract related vision problems is a decrease in visual acuity, please explain how this is consistant with a diagnosis of a cataract causing increasing dimness.

I didn't get any real answers to these questions and the consultant cut off any further attempts by myself to discuss this, just repeating that he had made a diagnosis, and without actually answering my questions above.

I've spent a good deal of time before deciding to post this wondering if the consultant is right and if I am wrong, but, everytime, I come back to these still unanswered questions above as well as the fact I cannot find any literature on cataracts which matches my symptoms (and believe me - I have looked at a lot of literature).

I suspect a number of years down the road the precursor activity will develop into actual cataracts and I will have cataract related issues, including the loss of visual acuity, to deal with at that time. However, it's clear after reviewing my symptoms that the current symptoms do not match a cataract. The early stages of cataract formation tend to be symptomless and it's clear I am still in that stage.

Summary

The thing which is making me angry is that there clearly is something very wrong with me and it's equally clearly still getting worse, but instead of an all out effort by the consultants to try and find the problem, I am basically told to go away or am given a diagnosis which doesn't match the symptoms.

I have asked myself why would they send someone away like this ?

The only real conclusion I can come to is that they are under so much pressure with targets that patients who are not presently severely debilitated and who test negative for standard conditions (which I have done) are basically sent on their way until they do become severely debilitated.

That might be acceptable when you can reverse the patient's condition after successfully diagnosing it. Unfortunately, vision problems are well known for generally been irreversible so the earlier they are diagnosed the better it is for the patient and the better the patient's quality of life can be.

As for the wrong diagnosis. I wonder if the consultant is focusing on one symptom in isolation and ignoring the rest of the symptoms. I cannot also help but wonder if this due to an unjustified arrogance on the part of the consultant or if it is because they are under such tight time pressure that they simply do not have the time to think through unusual cases like mine in detail.

I believe that I am going to have to become seriously debilitated before diagnosis will be escalated. Of course by that time, a diagnosis will probably be too late to do any good. I really hope it doesn't get to that stage.

You cannot believe just how frustated I am right now trying to deal with the consultants and wondering if I should direct my frustration at the consultants or at the system they operate in.

Symptoms and tests carried out to date

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.

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.