77/365 – Does where you live affect your myasthenia?

While currently it’s an impossible question to answer in the UK, due to the lack of data collated, I often wonder whether where you live affects myasthenia gravis. I mean this in many ways.

Living conditions

As there is no UK-wide data collated for MG it is hard to know what affect where you’re born and raised has on whether you’re likely to get myasthenia gravis or not. Whether this affects at what age the condition comes on is also a mystery. It would be interesting to see a national breakdown on a map of people with myasthenia plotting the number in each council area/region. Once the researchers have this information it will be easier for them to dig into different trends.

I often wonder would my condition have come on so early if I didn’t live in polluted London and work in a high stress job? Then I remember that many people are much younger when it comes on and I was fortunate to have most of my twenties MG-free.

Diagnosis

From what I have heard from others with MG, where you live definitely can affect how long it takes to get diagnosed. First of all it depends on whether you have a switched-on GP – that can be an issue anywhere. The stage after that –  when you get referred to specialists – is where location can make a big difference. If you have staff in these hospitals/centres that are aware of MG, the diagnosis is likely to be quicker which means faster treatment. However, if you live far from one of the facilities where myasthenia experts are based it is likely to take longer. In this case, you can go through several different hospitals before getting referred to a professional able to treat you properly.

I’ve heard many stories of people waiting years to have their MG diagnosed after several misdiagnosis’. Most of the time they have ended up needing to be hospitalised for long periods of times – the disruption in a person’s life including job-wise and the expense on the NHS for prolonged stays like this are just two of many reasons to push for better awareness. In these instances, the local hospitals they have been referred to haven’t picked up on the symptoms and they’ve ended up having to stay in/travel to hospitals far from where they are based.

I almost feel lucky that it only took me six months to be diagnosed, although I know I shouldn’t. Let’s hope future generations are not saying the same thing.

Treatment

Do you receive better/different treatment depending where your specialist works? There is much discussion about a post code lottery when it comes to medical treatment and I wonder what extent that is true with MG. Do certain areas with more budget offer a wider selection of treatment options or do they try a new treatment more than once without deciding it hasn’t worked? From what I have heard, the answer is yes. 

You have the right to be treated wherever you like, but people naturally stick to the closest hospitals to where they live. While they are saving on travel time and expense, are they missing out on different treatment plans?

Utopia

Thinking about these factors it’s hard to pin where the best place to live is. In a city, you’re more likely to be served by a hospital with experts but in the countryside you’re free from the stress, pollution, and potential virus outbreak. 

I often think about eventually moving back home to Edinburgh, but wonder how good the care is up there in comparison to London. Would that be enough to stop me from moving? Probably not, but it will be enough to make me think carefully before threatening to leave the excellent care I’ve received in the capital.

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