Going to hospital in Buenos Aires

After a frustrating discussion with travel insurance as I wrote about in the previous blog, I went to a Buenos Aires’ hospital to get help for my increased myasthenia symptoms.

As you can imagine, going to a hospital in a country where you only speak ‘un pocito’ of the language was frightening. I don’t think I’ve ever had such rapid deterioration and I had no idea of how to explain this or even if they would know of the condition.

Luckily, we found a private hospital where they had staff who could speak English. We went to the emergency waiting room thinking we should follow the same process as at home, but we were quickly redirected to the neurology clinic. The receptionists, although baffled by our ‘Spanglish’, were quickly able to establish that I needed a translator. Because it was so late in the day after all the messing around with the travel insurance, the translator had left however one of the staff members spoke enough English to help us.

Less than an hour after arriving, I was sitting in front of an empathetic neurologist who was telling me to relax and that I was in safe hands. My condition was explored and my symptoms documented – then the normal tests of muscle strength were carried out for the whole body (holding legs up, pressing up with arms, scrunching up facial muscles etc etc). The checks were more thorough than any I’ve had at home.

Having established that the flare up was only affecting my vision in terms of muscle strength, I was taken for blood and urine tests. The final tests were from a lung doctor to test if my breathing had been impacted. That was an interesting experience and not one I have had before – blowing as hard as you can into a piece of equipment like a breathalyser is bloody difficult. It gave me a lot of sympathy for anyone with asthma as apparently they have to do these tests regularly.

Finally I was asked to go back to speak to the neurologist. She was able to tell me within two hours of doing them that I didn’t have an infection and then we worked out a plan for my treatment.

The doctor prescribed me to increase my steroids to 10mg a day and two mestinons a day. If this had been in Scotland, I would have been disappointed to be jumping back up on the steroids. But when I was handed the prescription, I felt such a relief that I could have cried. I probably would have if I wasn’t so exhausted – by this point I could hardly keep my eyes open. And that night, for the first time in almost a week, I slept right through and woke up feeling a hundred times better.

I returned to the hospital for check ups after this and was given the same level of excellent care and support. Not only that but when I left, I was told if I needed anything to get back in touch and given the names of neurologists in the next place I was going.

While I know I was lucky to be near a capital city like Buenos Aires when this happened, I was very impressed by both the standard of care and the cost of the treatments. It may have been my travel nightmare up until the hospital, but as soon as I was in that neurologist’s consultation room I felt in safe hands.

The picture for this blog was taken outside Manzana de las Luces in Buenos Aires where I did a tango class a few days after the increased meds kicked in. Since those few days at the hospital, it’s been back to having fun and trying new things!

Myasthenia and using travel insurance

As I mentioned in my last blog, I had a relapse of double vision when in Uruguay in February. Before jumping to the treatment I received in Argentina, I want to talk about the experience I had with the travel insurance provider.

Ever since being diagnosed with myasthenia gravis, I have been particularly careful when choosing a travel insurance policy. I felt it was inevitable that one day I would need to use it and that time finally came in Buenos Aires last week.

Before calling the insurance company, I used the online doctor service that was included. It was literally a video chat with a British doctor who confirmed I should go to a medical facility to see a neurology specialist ASAP. So I phoned my travel insurance with her recommendation to check if there were any facilities that they would recommend, stressing that it was important for me that they could cater for English-speaking patients.

I hoped that it would be a quick call to the travel insurance just to get a recommendation, but I spent the next three hours having an on and off conversation with one of their staff.

After a long initial conversation about my condition and what the doctor had recommended, the assistant went away and then emailed me over an hour later with a list of rheumatologists in the city although I had told him that the doctor had recommended a neurologist. In the email, he also said I needed to phone each of them to see if they had English-speaking doctors.

When I phoned him back to tell him no I needed an English speaking neurologist, he told me I should consider seeing a rheumatologist instead…as if he had had a brainwave about treating the whole condition. Only after I was quite firm with him, did he eventually agree to look at neurologists. He then again emailed a google search of neurologists without any information about whether they spoke English but also said I should think about his rheumatologist point. Never in my years of having the condition, have I ever had a rheumatologist recommended and, from a quick check on the MG Facebook support groups, it’s incredibly rare that someone would see this type of specialist if they only have MG.

All the time we were having this back and forth ‘discussion’, I was in my darkened hotel room feeling my energy levels – which were at this point already very low – dropping. But there was no sense of any concern whatsoever from the insurance company assistant.

When we were on the way to the hospital I had found with English speaking doctors and staff, he called again to say that unless I had declared the condition I wouldn’t get any treatment paid for. Hardly the right time to bring this detail up! Of course I had declared it and paid the excess, which earlier I assumed he had seen on my file rather than adding stress to an already unpleasant situation after three hours of terrible service.

All in all, it was an utterly frustrating experience that seemed to lack in any kind of empathy. I know most people will not be shocked by this, but I do wonder why we allow an industry that is meant to be providing us a specific service to be so inept when we are at our most vulnerable? There is definitely a business opportunity for a kinder travel insurance company, or even a customer service team who ask callers once how they are doing.

I have now submitted my claim, so I look forward to seeing how that goes but I’ll be doing a bit more research about other providers the next time I take a trip.

Down to zero

After 4 years of MG symptoms and 3 and a half years of the diagnosis, I’ve been given the go-ahead by my consultant to reduce my medication to zero. Nothing, nada, zilch.

Earlier this week, I gave my consultant an update on how I’d got on with going from 100mg to 25mg aziathioprine. The short version is that I don’t feel any different now – there was a time when I wasn’t sure between 75mg and 50mg as my symptoms were worse than they’ve been in a while. But I waited it out realising that a month between stepping down doses wasn’t long enough so I’ve been waiting 2-3 months between reducing my dose.

Now comes the real test – my next step is down to zero then down to 1mg of steroids every second day then nothing. So totally drug free. 2017 will be the year I tested going drug free.

This is what I’ve been wanting for years, what I’ve been working towards, but this week I’ve felt a little numb to it. I’ve not been sure how to feel about it so I’ve put off thinking about it knowing that I’m away this weekend. In the middle of nowhere, with lots of time to think. But now I’m here and I’m still struggling to feel it. 

Thinking about it, it’s probably because now comes the scariest part. The ultimate test of whether the thymectomy and healthy lifestyle (early nights, good diet and lots of exercise but not too much) will allow me to stay in remission. Proper remission. 

I’ve been told it’s fine to take 1mg if I’m feeling weak, which is a good back up. But when I finish my latest prescription in a few days time, it will be time to step into the unknown. Wish me luck!  

Treating a set back like an experiment

So it’s happened again – just when I started to feel completely unphased by my myasthenia gravis I’ve had a set back. This is the way with a condition that fluctuates but it doesn’t make it any less annoying. 

Two days before I was due to go on a relaxing break to Spain my right eye starting playing up. I had a good night’s sleep and it seemed improved but then, the day before I was due to go, I had a later night than expected and woke on my first day off with a bad case of ptosis – dropping – on my right eye. 

My ptosis is usually mild now – a slight droop which is annoying – so I’d forgotten what a bad case feels like. I count a bad case as when my eye lid is almost or completely closed. No matter what I do it can take days or weeks to right itself and in the mean time it makes everything a bit more of a challenge. It means:

• looking anywhere other than down becomes problematic – looking straight ahead there is double vision as the right eye tries to adjust with a more limited field. This means I spend most of the time with my head tilted up and have more problems getting around
• having conversations becomes challenging – you can’t really look people in the eye because when you try their eyes move around their face. Oh, and you over-analyse every look of your conversation
• the eye lid feels really heavy and is constantly uncomfortable – I used to wear cotton patches during these times for comfort. It’s not great when working in front of a computer screen all day

I’m fairly sure that I’ve run myself down in the build up to the holiday – taking on too much and not giving my body the rest it needs. Then there was the sharp change of climate and routine which probably didn’t help either. 

Rather than waiting in a depressed stupor for things to return to ‘normal’, I’m taking a scientific approach. I’m testing out the impact of different things and will hopefully have more knowledge about how to treat myself next time. So far I’ve tried:

• Sleeping longer than normal – on holiday I had between 9-10 hours sleep a night. This is more than the  7-8 hours I get normally. This seemed to make it worse rather than better.
• Cutting out alcohol – after a break from booze, I had slowly reintroduced it to my routine and was having at least 2 drinks a day on holiday. Over the next week I’ll be removing alcohol again to see if it has an impact
• Upping my steroids – I’ve upped my steroid intake from 2mg to 3mg and hoping that extra tablet will help. If I don’t see an improvement over the next few days, I’ll increase it again
• Eating healthier – while I didn’t eat a lot on holiday, what I did eat wasn’t particularly healthy. I’m on a detox this week to aid healing including keeping it simple with just lean meat and green veg and lots of lemon water
• Cut down on caffeine – before I went on holiday, I was drinking more coffee than I ever have. While away, I cut down to 1 cup a day and I’m going to try to keep a reduced intake now that I’m back
• Rest – on holiday I did very little that could be described as ‘active’ for the first two days. I then slowly reintroduced exercise – gentle walks and relaxed paddle boarding. Now that I’m back I’m going to do less exercise than normal this week 
• Heat – unlike many others with MG, I find heat from a sauna, bath or weather works well for my body. Now that I’m back in an Autumnal Scotland, I plan to use the sauna every few days (as I had just before the photo above)

Myasthenia and eye tests

In the three years that I’ve had myasthenia I’ve been sure that my eyesight has been getting worse. When looking into the (not too far) distance I often mistake bags for children, dogs for bags and children for dogs. Yet in that time I’ve never gone for an eye test…why you ask, well I’ve been waiting for my eyes to be ‘back to normal’.

I didn’t see the point of getting them tested until they were as good as they could and would be again. Since the early days of my MG my left eye has been at a different kilter from the right so when I look up I get double vision. I hoped by taking the medication that over time this would correct itself. But it hasn’t and after 3 years I finally bit the bullet and went to get an eye test. 

The test itself was pretty tough – my vision doubled, blurred and I could feel ptosis come on as my eyes during what felt like hours of tests. I left with a lighter wallet and a very droopy right eye. 

The result of tests shocked me a little – anything more than 60cms away from me will start to blur. The optician asked how I had been functioning? In blurs and fuzzy patterns it seems now, any time I take my new glasses off.

What made me finally bite the bullet was the view from my living room. Although I knew it was beautiful, I longed to see the things Elaine described across the Forth in Fife – the distant mountains, the boats on the horizon and the sun setting – as more than just blurs. 

If my eyes do align again it might be that I’ll need a different pair of glasses although I asked that the optician did not put a prism in the glass so hopefully not. I did this because I had one I my previous pair of glasses when the first symptoms came on (which I lost before I was diagnosed). Rather than making things clearer, it made the world feel at a distance and always tilting which as you can imagine made me feel queasy. 

Myasthenia and post-thymectomy blues

A conversation I had over the last few days about the feelings you have after an operation got me thinking about my thymectomy. While there are a range of emotions you go through, my thoughts were focused on the disappointment you feel if it isn’t an instant success. I thought I’d blog about that nearly two years after my operation.

You go into hospital with high hopes when having a thymectomy –  you read that’s there a 30% chance it’ll make your MG vanish. You try to remember that’s still 70% of people who continue to live with it, but your mind says ‘be positive’. You think your consultant and surgeon have pushed this on you for a reason, right? I mean, it was practically from your first MG appointment that you were encouraged to have a thymectomy. 

Then, as happens for the majority, you have the operation and your symptoms are still there. In fact they may flare up because of the stress your body’s under post- operation. It’s spoken about or assumed by the medical team that you’re not one of the 30%. The good teams will tell you that it takes time for many people to feel the full impact of the thymectomy. Your loved ones will either be too polite to say anything or they’ll be straight up with you – they’ll remind you that hope isn’t gone. But once you’re strong enough to want more than basic comfort, you’ll begin to feel the loss of something you only ever had a slim chance of getting. An easy cure. That’s when you might hit a wall.

That wall will look different depending on the way your mind works and how you react to the thymectomy – for me, it looked like a mountain blocking my path. That I couldn’t hope to climb. Instead I sat down and looked up at the mountain – studied its sharp crags, the rain lashing down around it, the mist lingering at its peak, the broken path leading up at an angle I could hardly fathom. I sat still in the silence of the mountain’s valley and asked myself ‘why did I bother trying’. How deluded was I to think I’d be one of the ‘special ones’. 

As I sat stewing in that anger and frustration, I missed the initial changes.

I barely recognised the stable state I found myself in. Months past and all I had was ptosis and a bit of fatigue. No sign of double vision, slurred speech, difficulties swallowing or weak limbs. I woke from my silent trance to see that the mountain had transformed into a jagged cliff edge with gentle clouds over head and a calm sea lapping away. It was much more manageable now – everything was. While I went for little strolls, I didn’t stray too far. I was scared to try the path just yet for fear that it would shape shift before my eyes back into the terrifying rock face. Or that a surprise landslide would throw me into the sea and my legs would seize up. I didn’t believe the change was real or would last.

The symptoms stayed consistent and I found I was able to challenge myself more with work, with the blog and fitness. I began to feel stronger than I had for years – the only thing that remained of my MG was the fatigue when I overdid it and the ptosis. By the time it came to the year anniversary, I looked to the spot where the mountain had turned into a cliff and saw a rolling hill. The sun was peaking through the clouds now and illuminating a meandering path. This made me smile from my heart outwards and for the first time I considered that the mountain might not come back at all if I was careful. I went for further strolls now – roaming, seeking, testing myself. 

It’ll be two years in September since I had my thymectomy and when I find myself in that valley now, I see only that. A peaceful valley with mountains and cliffs and hills in the backdrop. I walk around safe in knowledge that I won’t fall or find myself scrambling on my hands and knees (unless I choose to).

 When I think about the first few months after the operation, I realise that the dark feelings I had are still there deep down. Like I’ve stored them away so I always remember. But I can look at them from a safe distance and know that accepting them and waiting for them to pass was the best thing I could have done. They probably won’t ever leave me because they were part of the journey of acceptance and because I think of them every time I see my ever fading scar. 

The majority of us won’t have that thymectomy miracle and while it’s good to be hopeful, it’s not the end of the story if it doesn’t happen. Even if it might feel that way at the time. 

Be patient, listen to your body and your mind, embrace what you’re feeling rather than trying to shut it out and pay close attention to the little changes. You might find yourself in that valley with me someday.

360/365 – Stepping down the immunosuppressants

After managing to successfully step down my steroids last year to a very small daily dose, last weekend I decided it was time to do the same for immunosuppressants. It’s a bigger deal with aziathioprine as my tablets come in 50mgs, so taking one tablet away means cutting out a third of my dose. 

For those of you who don’t know, aziathioprine, originally used for cancer, works by reducing the profiency of the immune system (the T and B cells of the immune system apparently). Because of this, taking it increases the risk of picking up infections and viruses as your body’s defence is weakened.

I’ve been swithering about stepping down for a while due to concerns about the long term risks. Not to mention the fact that I want to visit South East Asia this year and am concerned about having a suppressed immune system in a new climate. Ideally by the time I go, I would like to be on a low dose if not off it completely. One step at a time though as it has helped keep me well and healthy of late.

I’ve been waiting until I felt strong enough to do it. Weighing myself last week gave me the final push as the dose I was on was related to my weight around this time last year. As I’ve lost a few kilos since then and have been feeling stable for months now, the time is nigh.

The first week has had its ups and downs – I’ve had an upset stomach, felt run down (due to picking up a cold passing around the office) and I’ve taken the exercise regime down a few notches to give my body a break. My sleep started out not great, but is now back to normal, and I felt quite sick in the first few days of the reduced dose.

Having been consistently fine since early January, my right eyelid started drooping again. Whenever I’ve changed medication doses this has happened, but I wasn’t expecting it with aziathioprine as it normally takes time for anything to happen with this drug. 

It’s almost a week since stepping down and I’m feeling strong again. My eye’s back to normal and tonight I’ve completed a tough workout. While I’ll be paying close attention over the next while to how my body is behaving, I’m hoping that the worst is over.

344/365 – Has Aziathioprine worked for me?

On Christmas Day I was having a chat with my cousin who is also on immunosuppressants for a different reason – excema. As she has moved onto a different type, we began to discuss our experiences of aziathioprine. This led us to the ultimate question – has it treated the MG successfully?

Yeah I think so. I’ve been on a very low dose (2mgs) of steroids for months now and take little mestinon so it is my main form of treatment. I do have fatigue days occasionally and readers will know that my eye ptosis (droopiness) fluctuates, but my MG feels stable and relatively predictable. 

Influence of the thymectomy?

I do wonder how much the stability has to do with the thymectomy – I guess there is rarely one answer for conditions like this stabilising. Medical staff say it can take years for the full affect of the thymectomy to be realised and things have definitely been more stable after my recovery. 

Stepping down

As I’ve written about previously, I’m keen to lower the dose of aziathioprine to see how my body reacts. I think this will be when I really feel how much the drug has helped make the condition manageable. I wonder if the reduction will impact me gradually as it takes a long time to kick in.

No response to aziathioprine 

One of the research projects Myaware is currently funding is looking at early signifiers of people who don’t respond to aziathioprine. As the drug can take a long time to make an impact, if any standard early signifiers can be found it will be helpful as clinicians will know to try another form of treatment. 

235/365 – Free travel on London transport with myasthenia?

I’ve heard it a couple of times now from people at Myaware meetings – if you have myasthenia, you can get free Transport for London travel, called the Freedom Card. I’m torn by the prospect.

After rent, travel is the second biggest expense in London and there have been many times that I’ve considered cycling or running to work just to save the £120+ a month. When I first moved down and was completely skint, I would regularly wait at the travel card machine panicking that my bank card would decline (it did several times but not always thankfully). Now, I’m in a better financial position but I’m trying to save and travel costs are the first thing that I’d cut if I could. 

The freedom pass disability eligibility is the following:

• Blind, or partially-sighted, or
• Profoundly or severely deaf, or
• Without speech, or
• Have a disability, or have suffered an injury which makes walking more difficult
• Have no arms, or have a long-term loss of the use of both arms
• Have a learning disability 
• Have been refused a licence on the grounds of your disability

That clearly covers a lot of people with myasthenia – particularly the bit about walking being difficult.

The prospect of getting a free travel card because of my MG is an easy solution, right? Wrong. Mainly because I’m not sure I deserve it. There are days that walking is hard or my double vision makes travelling difficult, but there are other days where I am well enough to run into work. 

I can understand why people that are unable to work because of their MG should be entitled to it and I can see the case for people with mobility issues, but personally I think I would feel guilty taking it. 

I work full time, earn more than the average wage (although I doubt more than the average London wage) and am able to get around ymost of the time (when I’m struggling, the last place I want to be is the underground…if only there was a free taxi pass).

Before anyone jumps on the defensive, this is not meant to be a reflection on anyone else. I think it’s absolutely right that this is an option for people with myasthenia, I just struggle to see how I deserve it at present. As TFL is a publicly funded body, I would feel guilty and worry that I was depriving others who need the support. 

225/365 -Being at university with myasthenia

While visiting one of the world’s most prestigious universities on Sunday, I started thinking about how different my experience of being at university would have been with myasthenia. 

My time at university

I was 17 when I packed my boxes in Edinburgh and moved north to Aberdeen to study English literature. Before getting my exam results, I had planned to go to college in Edinburgh to do additional highers and advanced highers in a more grown up environment (I was fed up with school). But after doing much better than anticipated, it seemed mad not to just dive right into a university place through clearing – particularly as English was what I wanted to study and I wasn’t picky about where. 

I didn’t have the university halls of residence experience – instead I stayed with my partner at the time who had moved with me. That wasn’t the only thing that ruled out meeting new people; I also found it difficult to make friends in a lecture theatre with 200-300 people who all seemed to know each other  – probably from halls. Thankfully, there was a place I could turn to meet like minded people, the women’s football team. 

Having played since the age of 10, it was something I understood in this new world and I joined the uni team  alongside lots of other freshers or people who had decided to give it a go after a couple of years studying. It wasn’t long before firm bonds were made – a few of the girls I met during those first months are still good friends and I’ll always have fond feelings for the others that have slipped away over the years.

As the years passed, I picked up a few friends in my class and a couple of others when I moved into shared accommodation. I tried other sports teams along the way – making the basketball team but not enjoying it and spent two years in the boxing team, which I loved. I joined interest groups but nothing I was fully committed too. My university life was intertwined with the football team. My lectures, tutorials and even exams came second to training, matches and socialising with my girls.

So how would it have been different if I had MG?

While I have spoken to people with MG who play team sports casually, the level of fitness and commitment required from my university team and my own style of play would have made it impossible to be the integral part of the team that I was during those four years. I may still have been involved socially, but knowing who I was at 17-21 I doubt it would have been the same.

This means that my time at university would have been less enjoyable, less sociable and resulted in less of the long lasting friendships I have today. 

If I was attending now, it would be a different story as I’m more confident, have many interests, comfortable with who I am and with my MG limits (or lack of). But keeping in mind who I was then, I know that I would have been uncomfortable. Would I have been able to live away from home? Would I have met my partner at the time as I did in a bar after a few drinks?

As far as I can remember, there were no rare disease support groups but this may change in diffferent cities and if there had been I’m not sure I would have attended.

Others sharing their experiences

As this is projection on my part, I’ve asked some of the Myaware Young group to share their thoughts of being at university with myasthenia. Check out my next blog for their experiences.