Monday, 15 October 2018

Life with Myasthenia


OK so if you've read my last post, can I just point out that contracting Myasthenia Gravis (MG) was not one of my 60 by 60!

This blog started as a way of promoting my efforts at XC Motorcycle Rally Racing but has obviously changed with last month's news. And if you haven't read it already you can do so here: http://www.nomadracing.co.uk/2018/09/myasthenia-gravis.html 

So it's now morphed into my life with MG and how if at all possible I can keep biking, let alone racing!

But first what news on the MG front?

Well dear readers you will recall that I had just been admitted to MK Hospital for treatment, this was in line with the recommendations of the British Association of Neurologists for those with acute bulbar symptoms (the bulbar muscles include the mouth, throat, voice box, tongue and neck) and due to the risk when medication first starts of going into complete respiratory failure (basically the MG affects the chest muscles, making it impossible to breath without mechanical ventilation) yeah heavy stuff!

Just to bring home the point, I was transferred that first night to the chest ward, where I learnt there was another patient with MG who had just spent six days in the ITU due to just such a myasthenic crisis (as it's known). Strange to think that for such a rare condition we both ended up there together at the same time.

The good news was that I didn't have any such problems and reacted well to the medications. Although I still have the acute fatigue, the eye has been fine and my speech and swallowing have returned to near normal on most days. I got my neuro appointment that had originally been scheduled for October 29th on my first full day in hospital and they in turn referred me to the John Radcliffe Hospital at Oxford, a National Centre of Excellence for MG, so all good. Even better news was that after my CT Scan I was allowed home after only five days of incarceration.

After a couple more days at home I was able to return to work, again relying on a colleague for lifts, although this had the disadvantage of having to work a full day despite being signed off for a phased return to work over the month.

Well that all changed the next day when I was offered a cancellation at Oxford for the day after that, only one week after leaving hospital!

So as I write I've had an EMG test where electrical pulses are sent through your muscles to look for typical signs of MG (there were). Later that day I got to see Dr Leite the consultant neurologist, first step was my blood tests, which can (but not always) be the definitive diagnosis of MG. She explained to me that an antibody count of more than five is considered a positive result.... My count was five hundred and forty, I'd say that's definitive!!!

So that's it, Myasthenia Gravis it most certainly is! Funnily enough this was quite a relief as at least you know exactly where you stand. Worst case scenario I guess would have been a negative test (this happens in about 15% of cases) and there still being doubt.

So following that appointment my meds have been revised slightly, although still taking 19 or 20 separate pills each day and still on a high dose of steroids (70mg of Prednisalone). I'm being referred to the surgical team at Oxford for consideration to have my Thymus gland removed (which can improve the condition in some cases) and have been asked to participate in a research study into MG. 

But the best news was being told I can drive again on the basis that I have never had double vision (a common symptom of MG) and the ptosis (drooping) of my eyelid seems almost completely controlled by the meds. So as long as I manage my fatigue, basically by keeping my driving to short stints with frequent rests I'm good to go. I have now submitted my notification to the DVLA and i'm optimistic as they will rely on Dr Leite's report and she was insistent it be recorded clearly in my notes that she considers me fit to drive.

Since then living with the myasthenia is definitely a mixed bag. I could describe a typical day but to be honest there is no such thing. A good day is when I wake up feeling normal and then start to gradually fatigue through the day, this relates very much to the particular medication I take to improve neuromuscular function, Mestinon (Pyridostigmine), it last about four hours and I can definitely feel it wearing off. Equally It starts to act again in as little as 20 minutes, a clearly noticeable effect.

At first after starting the meds in hospital, all of my ocular and bulbar symptoms disappeared, generalised fatigue being all that remained. This gave me hope that I could completely control these symptoms with medication but this is not quite the case. Since then I have learnt there are days when any or all of the above can return without warning. The ptosis of my eyelid has only come back fully once but I often get a "flickering" sensation in my left eyelid that can be a bit disconcerting, sometimes my close vision becomes blurred so working at the computer is a strain but this is quite infrequent so far.

The bulbar muscles that control speech, swallowing etc are also occasionally affected and on one day in particular I had the "full set" (see below). More often I'll experience just one or two, often a tightening of the throat or tingling/numbness of the lips. On other occasions it will be a difficulty in chewing and swallowing or choking (which is quite scary) and regurgitating food up my nose (which is especially nasty) and other times a particularly intense weakness of the neck muscles. Thankfully i've only had slight speech difficulties on one occasion.

As a result of my ongoing fatigue I have yet to return to motorcycling full time but small steps as they say and recently I had good reason to try pushing my boundaries...

Obviously a fair few of my 60 by 60 list are based around motorbikes and so may need some revision but the most pressing was the fact I had booked to go on the Ride To The Wall (RTTW), the annual act of remembrance for bikers with eleven separate ride-ins to the Armed Forces Memorial at the National Memorial Arboretum near Burton on Trent. So given my good news on the Wednesday I had to consider if I could make the ride on the Saturday. I decided compromise was the order of the day and Grainne lent me "Bertie" her BMW G310R on the basis it was much lighter, smaller and therefore easier to manage than my KTM 1090 Adventure R.


A good job too as the weather turned out to be abysmal. First task was getting to my allotted start point at Northampton Services on the M1. Only 30 minutes from home, I duly set off into the monsoon and had a decent rest stop at the village of Roade on the A508 as I stopped after 20 minutes for fuel and lunch supplies, as well as the near compulsory pee stop, an effect I understand of taking the high dose of steroids.



Another short and truly dreadful hop, one junction up the M1 from J15 to J15A in truly appalling spray followed before taking shelter with the wall to wall bikers in the services. A coffee and pee later and we set off.

Once again the rain and spray was really bad and maintaining position in the convoy was tricky at times. I got as far as Corley Services on the M6 before my bladder called a halt so had to peel off of the group for a stop. After a suitable rest I exited the services and by now my group had long gone so I continued onwards trying desperately to remember the way to the NMA! I knew I had to use the M6 Toll (free to bikes on the way to the Wall) and luckily as I rode up it another ride joined the motorway from my left, so I just tucked in about a dozen bikes from the front. Appropriately I seemed to have found a slot in among a group from  the  BMW Club.

I continued through the driving rain to the Arboretum and we were marshaled round to our parking spot. It was just after 10.30 as we were obviously among the first to arrive. Strangely I then spotted my original group from Northampton arriving after us, so not sure how I managed that? The service of remembrance takes place at 2:15 so I had plenty of time to look round, seeking out memorials with a personal connection and bumping into several fellow blood bikers. It seems that wearing your blood bike jacket is a done thing, something I was unaware of.



The service was incredibly moving and a very humbling experience. And as an added bonus the rain had stopped.

The Ride to the Wall is the major contributor to the upkeep of the NMA with £780,000 having been donated over the previous ten years. It was an added bonus to know I had made a contribution to this amazing place, the donation for this year will be handed over a next year's Armed Forces Day on 29th June 2019.

My first visit over but I suspect not my last, I took a long careful ride back via back roads to Tamworth, then home on the A5. A much drier affair than the ride up although I was very grateful for my Keiss heated jacket. I was conscious that I should incorporate some rests stops but was also keen to get back before dark and before it got too cold. So I went for slow and steady all the way back.

So how did the myasthenia affect me? I did have a bit of trouble with swallowing and choking during the day and had to take frequent rests but thankfully the NMA has plenty of memorial benches that I was able to take advantage of.

As a result of my effort Sunday was spent largely in bed with no really bad after effects other that my fatigue levels were somewhat elevated. 

Monday was a different matter entirely, it was a surprise to have all my original symptoms return;  ptosis of the eyelid, swallowing and speaking difficulties, the first time since starting medication. Again a day in bed was required and work was impossible although by Tuesday I was back to my (new) normal self.

So that's two off the list. You'll see that the list is now colour coded; red for those still to be done and/or arranged, amber for those booked, paid for or scheduled and green for those completed.

And if you can't see the list, it's because you're viewing the mobile version of the blog; scroll to the bottom, click on "view web version" and the list will miraculously appear to the right.
And I had thought of another one: 

No 48: Create my own Gin at a Gin Workshop.

Grainne and I have had this idea for a while, so only proper it goes on the list and that way we'll actually get round to doing it (hopefully).

Then on Friday another perfect opportunity for the list presented itself, Grainne saw a facebook post from friend offering two tickets to see Michael McIntyre at the O2 Arena "tomorrow". All well and good.... until later that day she spotted it had been posted on the Thursday so the gig was that night!

Definitely not the thing to do with myasthenia, rush home from work, quick change and jump in a cab to the station. Grainne suggested we drive but I'd heard on the radio the M1 was blocked by an accident at Hemel Hempstead so not an option. We got on a train (thankfully a direct, fast train) with only a couple of minutes to spare and after Euston had the delight of the tube on Friday evening's rush hour.

Then join the hordes at the O2, meet up with Heidi and her son Lewis grab some extortionately priced food and extortionately priced drinks then settle down for a truly hilarious evening



Then it was repeat the journey home, this time with the added buggeration of a stopping train all the way to Milton Keynes not getting home until 01:30 none of which helped by the fact I had my last Mestinon around 6.00pm and forgot to take more with me. Luckily I seemed to get through the evening OK and after a decent lie in on the Saturday seemed to have survived!

So No. 49 See Michael McIntyre live at the O2 duly added and immediately ticked off the list.

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