Thursday, 14 January 2010

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.


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.


  1. I believe you should try to find a neuro-ophthalmologist. That specialty would be ideal to help your condition. Most patients who see these physicians have similar stories. They have already seen 4 or 5 specialists, and since they are otherwise young and healthy, they are sent on their way. The patients are typically very frustrated, just as you are. I am not familiar with the NHS, but in the United States I believe there are less than 100 neuro-ophthalmologists. You will have to look for large academic centers. I would NOT expect a general ophthalmologist to be able to diagnose your condition, but I would hope they could refer you to a specialist. I wish you good luck. Here is more reading:

  2. Than you very much for the suggestion and the links. This is something I will ask my GP about.

    BTW, it's actually nice to know you have knowledge of other people undergoing these types of problems getting diagnosed as right now I'm feeling so alone and isolated by what feels like an uncaring NHS.

    It's nice to get some confirmation that I'm not the only one this lack of diagnosis has ever happened to.

    Thank you for the feedback.

  3. Hi, I asked on twitter and my friend sent me this link, not sure if it fits the symptoms exactly but have a look anyway and see if it helps at all.
    Hope you get some answers soon.

  4. Jan, thank you for the pointer. While a number of the symptoms match, I don't think this is it due to the fact I have not seen any reduction in visual acuity.

    However, I intend to raise this with the consultant when I next see them just to made sure that they have not missed anything.

    I do want to thank you for having taken the time to ask around and respond - it is really appreciated. Thank you for doing that.

  5. No problem, there are a lot of us discarded nhs patients about! I hope you get to the bottom of it and good on you for taking your health into your own hands. I know a lot of people diagnosed with CFS/ME, which isn't (or shouldn't be) a diagnosis at all because it's just another term for 'you've tested negative for everything I can think of, I don't know what it is but here's a label for you'.

    I have Lyme Disease, undiagnosed for 3 years. Again, no-one knew what was wrong with me, I found out what it was myself eventually and then had it confirmed, loads of us out there. Very best wishes to you.

  6. Your problem might be onchocerciasis. The first manifestations of ocular disease are loss of twilight vision and peripheral vision (tunnel vision). Does this fit the picture?

    Filaria ELISA serology is available but it is unreliable. Your best bet is to ask your doctor to give you a trial dose of ivermectin. Around 60% of onchocerciasis cases have an adverse reaction to their first dose. They are usually okay for subsequent doses taken every 6 months.

    This disease is being ignored by infectious disease consultants. They prefer cases to live with it than treat it.

    Good luck

  7. Thanks for the suggestion. I've just read up about it and unfortunately this doesn't sound like it.

    There has been no loss of peripheral vision as such, it's just that the peripheral vision, like the central vision, is becoming uniformly dimmer in both eyes. The other reason I don't think it is this is that I have not experienced any pain or inflammation in the eyes and no-one has mentioned anything about cornea damage.

    Regardless, I appreciate you having taken the time to respond and if you or anyone else reading this has any other ideas, I would be very happy to read them.

  8. Hi there,

    I consider myself to have been "failed by the NHS" too, but for other ignored health issues. My eye problems are a bit different from yours but there are some similarities. About 3 years ago, I developed light sensitivitiy and had to wear dark glasses most of the time. That eventually improved over a few months.

    18 months ago, I developed a new problem, but this time only in my left eye. Bear in mind most of my life I've been wearing glasses, but only because I had a very slight weakness in the sight of my RIGHT eye, my left eye has had perfect vision my whole life. Anyway, 18 months ago I noticed that my left eye couldn't handle exposure to normal levels of light- though it could see well and with ease in the dark. I kept getting a floater which got in my way so much, that I couldn't ignore it and became so bad, that I couldn't focus on anything or look past it so it was affecting everything. The only respite I got was when I covered the left eye and the floater would disappear. Bearing in mind my whole life my right eye was the weaker one, but now I rely on it for all my sight needs as it isn't affected by this.

    Gradually over six months, the left eye became worse and needed covering more and more to the point that I've had to cover it completely around any light source for over a year now. Oh and here's the other weird thing; the visual acuity of my left eye is still very good! I had an eye test at the local optician and although the floater was quite distressing, I could still read the board well enough and in those terms my sight in that eye was fine- but there's been no point in having great sight in an eye I cannot use!

    The GP referred me to that optician and I was given eye drops but that didn't make any difference. They had to shine a light in the eye which was very distressing but at least they were able to confirm that I didn't have macular degeneration or glaucoma or that sort of thing. In fact, as far as they were concerned, they couldn't find anything wrong and rather unhelpfully told me to stop covering the eye. This has generally been a painless condition but when I tried to use the left eye 'normally' around a light source, within a few minutes, the floater would start stinging the eye as if it were a pin being pricked into it, so I gave up that idea and covered the eye again.


  9. (continued from previous post)...

    This wasn't my only health problem though, I have dozens of other body parts going wrong with me as well for the past few years which I only found out recently were due to Lyme Disease. I did take other antibiotics which helped other symptoms but did nothing for the eye but in October I started taking Doxycycline and since then, the problem with my left eye has been slowly but surely improving. I can leave the left eye half uncovered now with no ill effects- something I hadn't been able to do for about a year so I'm sure it's making a difference and I'm very hopeful that over time, this eye problem will diminish completely.

    My problem has been that the NHS tests for diagnosing Lyme disease are quite unreliable- in fact if you ask the ID specialist I saw, as far as they're concerned, I don't have it even though I am responding well to (private) treatment for it. When I was failed by the NHS, I had to find my own way too towards getting other tests and treatment which have helped.

    I do know that Lyme Disease can cause a multitude of unusual eye symptoms, including blindness which are often misdiagnosed or not spotted by standard NHS eye tests. I know it's a long shot to suggest Lyme Disease to you because normally, Lyme Disease can cause a multitude of other symptoms to other parts of the body like problems with some or all of the following: digestion, hormones, allergies, movement, mental health, heart rhythm, respiration, pain etc. I do realise that you don't have other symptoms and are otherwise healthy but on the other hand, sometimes I wonder if you might have an atypical manifestation of the disease in which case, take heart that it's not curable but it is treatable and can improve over time.

    Hope you find some answers.


  10. To the person posting at 22:52: First of all, you have my sympathy for your conditions and the way you have failed to be diagnosed.

    Given that your problems are isolated to one eye, have you asked your GP to refer you to the eye clinic of a regional hospital (as opposed to a smaller local hospital) ?

    Also, you are not the first person to suggest Lyme disease, so it's something I am going to ask about.

    Thanks for taking the time to share your story. It's nice to know I am not the only person having problems getting diagnosed.

  11. Hi again,

    I'm convinced that my eye problem is just another one of those many problems I've developed due to Lyme Disease. I let my GP refer me to the local Optician just to double check that there was nothing more sinister such as macular degeneration going on and the Optician was able to rule that out. My eye problem becomes ten times worse when it's exposed to light and that made the test very stressful and painful because the Optician insisted on shining a bright light into the eye so I don't want any repeat of that experience.

    I'm just relieved that since taking Doxycycline, the left eye has (albeit very slowly) started to improve. This all the more confirms my suspicion that the problem is Lyme related. My other concern is that I know a number of people on the Lyme forum I go to who've had problems with various parts of the body which led to operations which they found out later on were unnecessary and made them more ill in the long term. This was largely due to the lack of understanding or consideration of Lyme Disease in the medical profession and I have no doubt that even if I were sent to a regional eye hospital, they'd not only be dismissive of Lyme Disease as a factor in developing this problem but also try to give a different label and possibly coax me into some unnecessary treatment or operation that wont help. I've seen this sort of thing happen before and the consequences are heartbreaking.

    I've mentioned your situation to some people I know on another website to see what they thought. They're not Drs but know a lot about science and have the ability to think outside the box which sounds like what you need. One of them suggested that maybe you should get an fMRI (functional MRI) which is different from a normal MRI and that it should take a look at your brain whilst your eyes are experiencing this abnormality because then it might be better able to spot any abnormalities. Beyond that I don't know what else to suggest. Keep us updated as I'm interested in hearing how you get on.


  12. Neelu, thanks for asking around - the functional MRI idea is a very interesting idea. I will ask my GP about it.

    I've raised the possibility of Lyme Disease with my GP, but after double checking, the symptoms I have do not match and other symptoms she would expect to be present are not there. It was worth asking about however, because at least it eliminates one possibility.

    Right now, there are no updates because I am in the waiting game (again :-() as my GP has forwarded her research onto a neurologist to see what he thinks about some tests which have been suggested to her.

  13. Hi, I was just wondering how you're getting on and if you've had any answers yet?

  14. Hello Jan,

    Thank you for asking about my current condition.

    I haven't posted anything recently because I am still waiting to see a more senior consultant at a teaching hospital, which will happen in a couple of weeks or so.

    The condition still has not stabilised yet, but at least the rate of decline has not accelerated.

    I am still hoping that this condition, whatever it is, will stabilise just like it did (eventually) when this first happened to me a few years ago.

    What would be really great would be if I could get some of my previous brightness levels back, but I think the only thing I can really hope for is for them to stabilise.

    What's really annoying and worrying is that I have a GP who has done more work and come up with more test ideas than the so-called consultants which I have seen so far have done.

    It really does seem that when you present with an unusual condition the consultants (at least the ones I have seen so far) are unwilling or unable to spend the extra time trying to find out what is happening.

    The one thing which sticks in my mind is this: If my GP can come up with ideas the consultants have never raised (like a muscle biopsy to check for a DNA related issue), then what could a consultant come up with if they started getting serious about getting to the bottom of this ?

  15. Oops, I forgot to check back for your answer! Hope things have stabilised for you and you finally get some answers.

  16. Hi, someone#s just mentioned this book on a forum and I thought of you!
    Hope you're relatively well and getting some decent answers by now.

  17. Hello Jan,

    Thank you for the link - I'll see if I can track it down at a library, or failing that, I'll buy it off Amazon as it's certainly worth a purchase.

    Thank you.

    PS: In answer to your question, I don't know if you've seen my recent post yet, but unfortunately I am still getting the runaround although the rate of decline finally seems to be decreasing.