254/365 – Broody broody broody

Over the last year I’ve noticed myself getting increasingly broody. Call it the biological clock ticking ever louder if you like, but I think it has more to do with my slow acceptance that I can still have children with myasthenia. 

A few days ago I visited Elaine’s cousin and her three month old baby (who I’m pictured with above). I was warned before not to hog the little man as Elaine knows how broody I am, but it took all my strength. Just having the little darling clutch my finger and sit giggling on my knee made my heart melt. Then he had a nap on me and I found myself transfixed. How new mothers do anything other than watching their babies is a mystery to me.

Until earlier this year, I wasn’t sure if I wanted to risk passing on MG to my child. However, my consultant reassured me that the chances are very slim and the feeling that I will do all I can to make it happen has been rapidly growing since then. Regardless of how my myasthenia will be affected, with the right support, I believe I’ll be strong enough. The thought of being a mum when the time is right fills me with joy that my doubts can’t touch.

70/365 – To all the mothers of people with myasthenia

Although Mother’s Day is almost over, I thought it only fair to pay tribute to all the mums of people with myasthenia including my own. I decided to do this after seeing the below image on Facebook – it is apt for my mum.



Children with myasthenia and congential myasthenia

Being the mother to a child with MG or Congenital MG is not easy. How do I know this? From talking to mothers who are frustrated/grieving/constantly battling for something. It all starts with the diagnosis – getting a child diagnosed with MG is an absolute nightmare from what I’ve heard. First of all if they are very young they won’t be able to communicate their symptoms and even if they are old enough to talk when it comes on they might not know how to or want to talk about it. 

It’s hard enough for an adult to get MG, but imagine witnessing your child’s eye sight going double over night, their eyelid drooping, their limbs flopping, them struggling to breathe or them not being able to swallow any kind of solid food all of a sudden. Yet when you take them to the doctor, the symptoms may have passed. If they have a good doctor they might get referred to a neurologist who knows about MG. But if they have congenital MG, they might not have the anti-bodies that are tested for MG. They will have had to sit through painful tests to have no result because the hospital might not know about congenital MG. 

Then once they eventually get that diagnosis, everything is a struggle, an expense and more difficult. They may have to fight for extras and have to hope that their child gets teacher and health care professionals who are willing to go above and beyond. Who are empathetic and genuine in their love of kids.

Then there’s parents of teens who have MG. Being a parent of a teenager is hard enough, from what I hear, but imagine the heartbreak of seeing your child struggling with the MG on top of all the other issues that time raises. Their self loathing will be particularly difficult to deal with – with my other hat on I’d recommend encouraging them to speak to Childline. 

Imagine being that parent. Imagine the strength it takes to keep smiling with your child when they are being tested for all kinds of life threatening conditions. I don’t know how they do it and I bow down to them for their mental strength and the depth of their love.

Mums always see their kids as children

While I am grateful that my myasthenia came on as an adult, I know that in my mum’s eyes I will always be her little girl – fragile and in need of protection. As I have said before, she has been incredibly supportive since I was diagnosed. 

Weirdly I have blanked the memory of when I first told her, but I remember the concern in her voice when I told her about my squint eye for the first time (mar 2013 – lasted 2 weeks then vanished. I didn’t get diagnosed until sept 13) and her constant checking after that about how my eye sight was. Perhaps her mother’s intuition warned her that something was not right, even although I know every time she asked she hoped there would be nothing to report. 

Since my diagnosis, she has put the FBI to shame with her research, she knows my appointment diary better than I do and has kept tabs on my medication progress. She takes such an active interest that I know if I forgot something, she would probably remember it. She came to stay for a week and a half when I had my thymectomy, even though she was in agony with her hip, and came to the hospital twice a day to visit, brushing my hair and washing my face when I was in too much pain to do it myself. And since then she has supported my desire to be healthy and strong, always has gluten and dairy free food in for me coming home and asks about how I am getting on every couple of days. Not to mention, she is the number one reader of this blog – hi mum. 

Basically, I am incredibly lucky to have a mother who is endlessly selfless and always ready to listen. It must be difficult to have your child diagnosed with any medical condition and each mother will handle that differently. If you are a mum and reading this I would hold encourage you to follow my mum’s example as a role model – research the condition, speak to others who have it/know about it, always ask your child how they are feeling and try to understand that if they are not willing to talk about it it’s not personal. They will come to you when they can but knowing that you’re there for them can make the daily battles that little bit easier.

Thank you mum and thanks to all the mums out there who always try to make life easier for their kids. We’d be lost without you! 



65/365 – Consultant catch up

So after six weeks it was time for my appointment with my specialist to find out what my latest blood tests showed and what’s next for me. 

As often is the case, there was a trainee doctor in the room and so I wasn’t inclined to ask all the questions I had wanted to – a clever ploy. I also felt more rushed than I do normally when it’s just the two of us – perhaps because they need time for discussion in between each patient? Although it was a 10 minute turn around, and all that was mentioned of my tests was that they were fine, there was one question that couldn’t wait. The issue about aziathioprine and whether it affects fertility. 

After being on it for nearly a year, and knowing that he plans to up my dose to the full amount someone of my weight can be on, I had to know whether I’m reducing my chances of being able to conceive. His answer was inconclusive – one more thing the specialists aren’t sure about – but there’s no evidence to suggest it does harm fertility. He did say that other similar drugs to treat MG are likely to cause more permanent harm to the body, whereas there’s no evidence that aziathioprine, my immunosuppressant, does. He added that the steroid I’m on – prednisolone – has worst potential side effects like diabetes, brittle bones and high blood pressure which would likely affect fertility along with everything else. So staying on that instead isn’t really an option.

But for the first time he brought up a plan for me. He suggested that if I could reduce the steroid completely and get the symptoms down/ gone completely on the immunosuppressant, then over the course of about 12 months we would gradually reduce it to hopefully make me drug free. This is exactly where I want to be and it gave me hope that he would raise it. He isn’t the type of man to raise ideas lightly. 

He also said that when I do get closer to being ready for pregnancy we can start preparations. He hinted that if I waited a few years it may be a drug free pregnancy, but if I was still on the aziathioprine that would be ok too as it isn’t known for causing birth defects.

While it was a short catch up today, and I’m not back until August, I take away the positive that my consultant has a rough plan in place for me. It left me positive enough to do a tough training session tonight (as pictured running to the gym).  Stage one of the plan starts tomorrow – lower the steroids and increase the aziathioprine. 

42/365 – Periods and myasthenia gravis

I’m not sure how it happens – there are definite conclusions to be drawn about my intellect – yet every month my body takes me by surprise.

Warning this post borders on too much information (TMI), however I believe this is a relevant life issue for women with myasthenia (and men who love women with myasthenia). Physically and emotionally I’ve always been affected by getting my period. When I played football, I would dread getting my period before a big match as it would hinder my energy levels and give me heavy legs. I would also cry at all kinds of things that normally wouldn’t touch me – like adverts, something someone said or a bag hanging beautifully in the air. Seriously.

But then myasthenia came along and the silly was replaced with something more sinister. I am so affected by MG when I have my period that I believe myself to be ill, as I did this week. My symptoms flare up, particularly my ptosis, my skin gets ravaged and that heavy feeling I had in the past has quadrupled. It lasts for about three days – two days before and a day during. Then it’s like a weight gets lifted and goodbye for another month. I feel liberated – for the first few hours until other priorities get in the way. I felt liberated tonight – I was able to train hard again and box (as pictured) before running out of steam.

I’ve always wondered if it
was just me but interestingly I’ve come across some research about the exacerbation of MG symptoms around period time. It says that 67% of women find their condition exacerbates before and during the menstrual period. Many of them had to increase their medication around period time – something I have thought about doing in the past. Either way there is evidence, from this research, that people with MG need assistance in how to manage their increased symptoms at this time. I do wonder if I ever go into remission if my symptoms will still flare up around that special time of the month.

But for now I’m just happy to be feeling better .

32/365 – Pregnancy and myasthenia gravis

Disclaimer: I am not pregnant nor do I intend to be pregnant for the foreseeable future. In the picture above, I have a cushion up my shirt. It’s just that having children is something I’ve always wanted. I used to say I’ll have kids one day in the same vague way that I’d express my desire to explore Japan or learn to kayak. I’ve got no date in mind, no strategy in place and little savings to fall back on. I just know that I want to be a mum at some point in the future and I’ve always taken it for granted that, when the time is right, I’ll be able to pop out a couple of healthy and happy kids. I should say at this point, as a gay woman, it was never going to be that easy, but I thought I could worry about the details later.

Then I was diagnosed with myasthenia gravis and yet another thing I had taken for granted became complicated.

Last week, when I visited my consultant, I decided to quiz him on a range of different life matters including pregnancy. Since then, I’ve also spoken to a couple of mothers with MG for Rare Disease Day case studies.

I had heard anecdotally through Myaware that, with a little bit of playing around with drugs, pregnancy isn’t too much of an issue for ladies with MG. Sure, the stress of labour can often trigger a relapse, but it’s not a particularly fun filled episode for any woman and what better reason to relapse than while giving life.

In my early panic about the condition, I’d picked up some misinformation about the potential of passing MG on to your children. That gravely concerned me. Could I really take the risk of giving a child this condition? It is difficult to cope with as a relatively secure, relatively sane, adult and I’m not sure how children and teens cope with the burden of ‘weird’ eyes, voice and speech.

Thankfully my consultant assured me that the chance of passing on MG is very unlikely. He clarified that you can pass on the rogue antibodies for a short amount of time, thus giving your child neonatal MG, but the babies are monitored closely and the symptoms pass quickly.

He then mentioned that there is a completely different condition which can be passed on – congenital myasthenic syndrome. But, it would require a gene fault from both parents and is not connected to MG. It is a genetic condition, rather than an autoimmune condition, that is often noticeable from birth and has similar symptoms to MG including obvious facial muscle weakness.

I also asked my consultant about medication during pregnancy after reading that aziathioprine is dangerous for babies. He encouraged me that, at present, staying on aziathioprine is what he recommends because coming off medication completely is dangerous for both mother and children. In the most clinical of terms, he did stress that birth defects are highly unlikely. Here’s hoping by the time I want to have children, I’ll be on reduced doses of medication or off them completely.

He mentioned a drug that he is keen on for pregnant women but at present it is unlikely to get the go ahead. It’s called Rituximab and can be given as an injection twice a year so the impact should be less on the foetus. However, the issue is cost – he estimated the treatment costs £5,000 a go.

After my appointment last week, I spoke to a couple of very brave women for Rare Disease Day coverage. Two of the three mentioned that aziathioprine can cause issues with fertility. This was the first time I had heard it and I was obviously not impressed after six months on the drug. My consultant had warned me about the cancer risks, which stopped me from using it for a few months due to the history of cancer in my family, but said nothing about fertility being affected.

Thankfully I don’t have long to wait until my next appointment to grill him as we are meeting in early March to discuss upping my Aziathioprine dose to the maximum. Before I give the go ahead for this, I will be looking at what has been written about aziathioprine and fertility. If you have read anything interesting (that sounds reliable) please do share it with me.

Also if you are a mother with MG, and would like to share your experience of pregnancy with the condition, I would love to run a guest blog on this so get in touch at laurnacr@hotmail.co.uk.