Annoying the Doctors

If you’re in a position similar to me, where your symptoms are so obscure and test results so inconclusive that you’re stuck in a frustrating limbo, you can begin to think that you might be an annoyance to the doctors that you visit. 

They know that they do not currently have the answer and have run out of tests which may be useful in narrowing down the possibilities. They begin to suggest things like “seeing your GP for psychological help to deal with the uncertainty”, which angers you because you would rather deal with the root cause.

They appear optimistic without reason, suggesting that one day you may wake up with your vision restored and all of your symptoms will miraculously disappear; you know this is very unlikely. 

They suggest that you “try not to think about it”; you know this is impossible when it impairs your every day life and parts of your visual field is obstructed by shimmery blind spots 24/7. (Imagine having a piece of dirt or a fly stuck to your glasses and not being able to wipe it off.)

They ask what you think the problem is. This angers you because you know from past experience that they tend to shoot down any ideas you suggest, saying it is very unlikely. But in fact, it is likely that whatever you have is very unlikely! 

New doctors that you see don’t read your notes properly and say all of the problems are caused by anxiety or depression. Clearly not. 

I have nothing against doctors at all. I have very rarely encountered a doctor that didn’t want to listen. It is just difficult seeing doctor after doctor when they don’t really understand how you feel and cannot to anything to help. Also, having to hold back the frustration so that they don’t mind seeing you again. 

More specifically for young people, it affects all aspects of your thoughts about the future. You want to imagine being old and retired, playing with your grandchildren, gardening… (and I don’t even flipping like gardening!) but in reality you don’t know if all these things are possible because even right now these things would often be difficult, in your mid-twenties, with the symptoms you’re having and you don’t know what is causing it. 

You worry about finding a partner who won’t be put off by your medical problems and, although it is easy to sit at your laptop and chat with people on dating sites at times when you’re feeling tired or unwell, it is less easy to get out there and meet people. 

After writing all of these thoughts down, I can see why a doctor may suggest psychological help! But in fact, it is not depression preventing me live a normal life, but physical symptoms. Inside my mind I want to run about and keep busy like I used to, but I know if I do this then it will ruin the rest of the day so it is often best to save energy. So instead I sit here and write this… 

Private consultation

So I had my private consultation today. It cost me a decent sum of money for the priviledge but it’s something I wanted to do, in order to get a second opinion and to see someone who could dedicate more time to discussing possible causes with me.

Well, walking into the hospital was a pleasant change from your average hospital, with a quiet waiting room and staff that weren’t rushed off their feet. The nurses greeted me and gave me updates on when my doctor would be arriving, etc. They said I could get myself a complementary hot drink while I waited. The toilets even had posh handsoap and moisturiser like an expensive hotel!

When I saw the doctor, he had already looked through my notes. He gave my eyes a thorough examination but (unsurprisingly) agreed with the NHS doctors that he couldn’t see anything wrong. He did, however, suggest a test which may be useful and hadn’t already been done and said that my local hospital should be able to do it. He also had me draw out my blind spots on a grid.

So overall, I’m glad I had a private consultation but in my case, in itself it wasn’t overly useful. But let’s see what comes of the test he suggested.

Warning: This is a Rant…

I appreciate British healthcare and the NHS, I really do, but sometimes I think medical staff are forced to justify their actions to such an extent that patient wellbeing suffers unnecessarily.

For example, if I went to my GP with a stomach bug or a fever, they will happily hand out antibiotics without a formal diagnosis. They don’t pass you from specialist to specialist so that by the time you finally receive treatment the infection has spread to the rest of your body!

But this is not the case with all types of illnesses.. I am now on my 3rd ‘episode’ of whatever this is (see previous posts for details). I know with things like this they often tend to take a ‘wait and see’ approach and a lot of people are left in limbo for years during this time with no treatment.

In my case, although most of my symptoms largely ease after each episode, the damage to my visual field remains permanent. But the last episode lasted from May to October 2012. I just wish that a doctor was able to try treating me with something without a diagnosis. I have heard cases where GPs have handed out a single course of steroids without a diagnosis but this is not my experience.

I actually got upset at my opthalmologist appointment this morning due to the feeling of helplessness, to which he suggested I see my GP for ‘psychological help’. I don’t want that… Sorry for the rant.

Symptom Checker

I thought I would list all of my symptoms during an episode (in no particular order as this would over-complicate things) so that anyone experiencing similar issues, whether diagnosed or not, can compare to their own symptoms. I am interested to hear from anyone with similar symptoms! My first episode occurred towards the end of 2010 and lasted a few weeks and the second lasted several months (neither were treated). Some recent dizziness and numbness suggests a third episode may now be occurring. 

– Headaches, often triggered by sitting in certain positions such as slouching

– Dizziness

– Some sensation loss in the skin on certain parts of the body, never complete numbness

– Slight weakness and loss of coordination

– Loss of visual field in both eyes (this symptom did not resolve after each episode, unlike other symptoms)

– Feeling of pain or pressure behind the eyes, sometimes a sharp stabbing pain in the eye