Saturday 22 September 2018

Myasthenia Gravis

I’m betting you’ve never heard of it? Which is not surprising as it is officially a “rare disease”, affecting only 15 people in 100,000 in the UK every year.

Funnily enough I first heard about it back in the 1980s even though I didn’t know much about it but not so funny is the fact that I contracted it myself a few weeks ago.

Yes shit happens!

Myasthenia gravis (MG) is an autoimmune condition. The antibodies your body produces that normally fight infections end up attacking the communications system between your brain and your muscle movements. This results in muscle weakness, muscle fatigue and generally making you feel weak. 

It predominantly affects the face and neck causing issues with the eyes, chewing and swallowing and speech, causing slurring and making it difficult to understand the sufferer, all of which I currently have. There is no cure although it can be largely controlled with medication in most people and there are a number of different treatments available.

So why I am going public? Well it’s not for sympathy or because I’m feeling sorry for myself but certainly in the short term if you bump into me or call me you may well wonder if I’ve just knocked back a couple of bottles of Gin! Yes, my speech can get that bad, even Grainne struggles to understand me at times and she’s used to my inane ramblings.

And to be honest I have nothing to hide, I’ll end up telling most of you in person at some time and this saves me a whole lot of (potentially slurred) explanation 

Often the first signs of myasthenia are with the eyes, these include droopy eyelids (known as ptosis) which was the first sign in me although it has only affected one eye. I have problems eating and as mentioned with my speech. I’m also suffering weakness of the neck muscles and general fatigue. I start off OK in the morning but progressively tire throughout the day as the other symptoms worsen too.

Having noticed the first symptoms just over three weeks ago, I went to my GP who first checked I wasn’t having a stroke, which of course I wasn’t but was then unable to explain my symptoms and put it down to a viral infection. 

Four days later I was feeling so unwell I went to the Urgent Care Centre at Milton Keynes Hospital. After doing the usual checks for a stroke again, the GP I saw there was equally mystified and called in a colleague. She also had no idea so a call was made to the main hospital. The first Doctor spoke to a ITU consultant who told them to send me straight over to him where he was currently working at the AECU (Ambulatory Emergency Care Unit).

A load of tests followed, including an ECG and loads of blood being taken and the Consultant then tried a test by putting ice on my eye, which in 15 minutes had reversed the ptosis (sadly only temporarily) so he pronounced that he thought it was Myasthenia (cue getting the phone out and googling it)! 

I then got sent for a Chest X Ray as there is an even rarer form of Myasthenia, Lambert-Eaton Myasthenic Syndrome that can be caused by Lung Cancer but thankfully my X Ray came up clear.

I was told in no uncertain terms I could not drive and sent home to await an appointment with the Neurology Consultant. The ITU Consultant spoke with him the next day and he too was “99% certain it was Myasthenia Gravis”. The blood test will hopefully give a definitive diagnosis but so far it seemed pretty certain.

A CT scan of the Thymus Gland in my chest was also booked as this is suspected to be the possible source of the antibodies and can become enlarged or have benign tumours in Myasthenia and may have to be removed.

So what followed was two weeks of buggeration, trying to get to work in Northampton, relying on Grainne and a colleague for lifts and working at home. I also got my neurology appointment but not until the 29th October…. Another six weeks without being able to drive or ride my bikes!!! 

Unfortunately, this also coincided with a daily worsening of my symptoms.

So yesterday we emailed the ITU Consultant I first saw to ask if the blood test results were back and express my concerns about my symptoms. He phoned us almost immediately and told me to get back to the hospital and pack an overnight bag…. Oh heck!

So upshot is I got to see the Neuro Consultant yesterday, although the blood tests are still not back (this is normal it seems) he diagnosed Myasthenia Gravis on the basis of my “text book symptoms”. So I have started my drug regime already but this means having to stay in hospital for seven days to be monitored as they adjust the dosage to find the right one for me. This is due to the risk of my symptoms suddenly worsening before getting better.

So here I am in Milton Keynes Hospital, not actually feeling ill, as Myasthenia symptoms do improve with rest and I’m getting plenty of that and already bored (the Neuro Consultant did warn me), which has trigged my decision to put pen to paper (OK, I know it’s really just rearranging some electrons or something). 

So in summary the bad news: 

As I’ve said there is no cure and although some people do recover fully or go into remission this is very rare.

In the worst cases it can affect the chest muscles and impact on breathing causing respiratory crisis and requiring hospitalisation and going on a ventilator (yikes)! Thankfully that is also extremely rare.

The drugs do of course have side effects, immunosuppressants do increase your risk getting other infections for instance. That’s without the stomach cramps, muscle twitching, diarrhoea, feeling sick, weight gain and mood swings that can potentially result.

It’s a notifiable condition to the DVLA so potentially you may have to surrender your driving licence. Definitely not good news to a petrol head like me! Hopefully this won’t be the case as my eyes have not been greatly affected, I haven’t had double vision for instance which is a common symptom.

The good news:

As I’ve said it is controllable with drugs and this is true for 90% of people with MG

I get Free prescriptions! (I am learning to accept any silver lining however small)

I may even qualify for a blue parking badge (as long as I can drive)!

Well you’ve got to look on the bright side!

Tuesday 4 September 2018

Sixty by Sixty part 2

NB: If you're reading this on your phone or tablet and therefore using the mobile version, you won't be able to see my Sixty by Sixty list. Just scroll down and click on "View Web Version" and the list will magically appear on the right hand side

OK it's started!

Grainne suggested that I should add spending a day at a spa with her to the list. Just us, no kids, no animals a bit of "us time". I wasn't sure at first as it seemed a bit ordinary but on the basis that we'd never done it before I agreed it should go on the list.

Which was a good thing as she had already booked it! So to celebrate the 4th anniversary of our first date we went off to the Y Spa at Wyboston Lakes, a superior suite booked in the Waterfront Hotel, lunch, dinner and breakfast included, four hours in the spa with thermal pool, sauna, steam room, salty steam room (our favourite) and a 50 minute hot stones massage as well! All very relaxing. Shame that dinner service that evening was abysmally slow and food so over cooked that Grainne's starter had to be sent back and eventually refused as the supposedly grilled asparagus had clearly been boiled and for far too 

I've also added a few others items since starting, so the list is now up to 47 items, glass blowing has been added after a suggestion (thanks Jane), although I did reject Andy's idea of juggling whilst riding a unicycle to the North Pole!

Going to the Opera in Verona was another long held ambition that I forgot when first compiling the list. Although we have been to Tuscany this year and last, so were within driving distance of Verona, both times we were there in May and the Opera doesn't start until June.

I also decided that as Learning to Snowboard was on the list, I really ought to actually go snowboarding. So a snowboarding holiday was added to the list and booked for Bormio in the Italian Alps next March.

I've always wanted to go up the Shard since it was built but again completely forgot that fact when compiling the list, I was reminded when I got an email offer from "Bookatable by Michelin" for a fixed price lunch at Aqua on the 31st Floor, so another idea was added to the list.

I've also added 'ride the UK leg of the Trans Euro Trail' which is a little bit of a cheat as I have ridden many of the individual non-tarmac sections over the years. I'm still deciding whether to ride it all in the right order, which at 2923 km (1816 miles) potentially takes 14 days (Although that could be broken down into stages) or just to pick off all the non-tarmac bits still remaining. Either way it's on the list.

Still looking for ideas!