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