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.


  1. My father had terrible eyesight problems after a stroke affected the optic nerve in the back of his head. Perhaps you are having mini strokes there?

    Hope you can find some effective testing and treatment soon.

    Lyme disease also affects the eyes (it's affecting mine); the spirochaetes love eyeballs. The NHS denies the existence of chronic Lyme.

  2. I've considered Lyme disease, but there's no evidence of inflammation of the optic nerve (signal propagation times were normal in the ERG) or in the eyes.

    I must admit I am also leaning to some kind of brain processing problem (especially given the way both eyes are been affected equally), but the MRI has not shown anything, so it's not a lesion type problem. Of course, there are other types of brain issues it could be.

    While I am functioning normally apart from this vision problem, this is the line of enquiry I am currently pursuing with my GP (in the absence of any consultants willing to perform more detailed investigations of the vision system as a whole).

    Thanks for your suggestions.

  3. PS: when I mention the ERG above, I meant the VEP (Visual Evoked Potential) test, which is responsible for testing the optic nerve.