My 15 year old daughter recently tested achr positive for Myasthenia Gravis. Her symptoms are as followed; Extreme Fatigue, droopy eye, achy joints, double vision, muscle twitching, bad chest she has Asthma too, always ill with coughs and cold, flu like symptoms. Arms feel like they are going to drop off when brushing hair, drying hair and holding hand up at school. Unable to walk far as she becomes breathless and is all over exhausted. From been a toddler she has never ran about or been able to walk far, she has always got every illness going and it has always lasted much longer than an illness should last. I told my concerns to the Drs from her been around 5 years old to be told some children just are poorlier than others and its her immune system building up! When she was 8 years old she had broken her right arm 3 times in the same place her foot twice and her finger and toe all in circumstances where her bones should not have broken. I expressed my concerns over this and finally got the Dr to do a bone density scan and a calcium blood test. these came back normal, i still expressed my concern about her being ill all the time and the fact that bones should'nt be so easily broken but nobody was bothered about it. Kaitlin spent approximately 18 months at the age of 10 with no illness and she was less fatigued, i finally thought she had grown out of it! ( i'm now wondering if she was in remission) not that i know much about it. I was diagnosed with myasthenia about 18 months ago although i have had it much longer it is hard to pinpoint between 10 and 15 years i think symptoms came on mild and i learnt to deal with it never having had to work more than 3 x 4 hour days a week on a computer with half hour break inbetween. At 13 Kaitlin had a really bad break in her foot 4 bones in a straight line none weight bearing for 6 weeks. This was both physically exhausting for her she had no strength to do crutches at all and we ended up having to get her a wheelchair so she could cope around school and home. (she was walking on the laminate floor her leg gave way and she fell on her bum, how can she possibly do that much damage to herself under those circumstances.) This sent alarm bells ringing once more there had to be something wrong with her. I mentioned this to the consultant who could'nt care less and said she was slightly heavy so possibly why and also a teenager. She had physiotherapy and was sent to a podiatrist for her bad posture and the fact her feet stick out she walks at 10 to 2. apparently because her muscles have grown slower than her bones, she also has slight hypermobility. I am trying to keep this short!! I mentioned to the podiatrist that i have an aunty with myasthenia and a aunty with fibromyalgia as they are both muscle conditions did he think this could be her problem he said he didnt think so but might be a good idea to get it tested. I went to our GP to request blood tests for myasthenia and other things thyroid etc, she referred her to a paediatric consultant. In the meantime i got my test results back and tested positive for myasthenia. i then started to do reading up on it, anyway she eventually had lots of blood tests and all were fine except for myasthenia which came back positive. I felt quite upset that she has this at such a young age but at least we knew what is wrong with her. We were then referred to a paediatric neurologist who quite clearly knew nothing about symptoms of myasthenia, was completely uninterested in her fatigue, illness or anything and said she was only borderline she was very contradictory in everything she said the next breath 5 or above is positive Kaitlin was a 7 i was a 5 and definately have it she just snubbed this said she was coping ok with it and said she didnt want to see her again until the beginning of next year before her exams. We left feeling very confused and rather let down. Any advice would be very welcome.

I think it is clear that you need to see another neurologist. Probably worth lodging a complaint with the hospital too.

Has she been prescribed any medication at all?

We have seen her paediatric consultant today he was disappointed with the neurologist he agrees that she needs sorting out and cannot continue like this. He is going to see if my neurologist will see her and if not then refer her to a different one, will be much further to travel but that doesn't matter as long as she is sorted. We are in the uk so she is supposed to see a paediatric neurologist until she is 18 for some reason, she is adult size so don't see the problem. Obviously the NHS is under staffed and poorly managed waiting lists are usually 6 months for consultants and 6 + weeks for blood tests, scans etc!!! She is on steroid inhalers for asthma, she has just had yet another 2 week course of antibiotics and 5 day course of predisolone 8x5mg once a day which worked well till she stopped them hence another week of antibiotics. Thank you for your reply.

And what has been done about all these broken bones. That is not normal. MG can make you fatigued, but is unlikely to cause broken bones.

Asthma, does she actually have asthma, or have the doctors simply taken the short easy route of prescribing inhalers. I am concerned because you said steroid inhalers, that added to predisolone, one has to wonder if, especially with a child, an overuse of steroids is causing the bone issues.

I am assuming and hoping that her paediatric consultant has investigated and considered all of these factors. But you never know.

I did wonder if her bones had become weak to steroid inhalers but she had broken several before she went on inhalers, but weak muscles don't support your bone structure properly either. No it isn't normal to break bones like she has done but the Drs aren't interested. The only tests they have ever done with asthma is the peak flow test!! I asked the paediatric consultant about her having a pulmonary lung function test, he said he is going to refer her to a different neurologist and do further investigations, and that she needs to get sorted out asap the paediatric consultant is the only dr who has been interested in her symptoms and was the one who told us she definitely had a positive blood test for mg. hers was a 7 and mine was a 5 so Higher than mine. It will probably take about 6 months for anything to be done knowing the NHS.
Thanks for your reply

My heart goes out to you and your daughter. Keep on top of them, the doctors. Go back every time you can. He who shouts loudest often gets seen first. And yes it might put some backs up... but hey, they are not doing anything positive now are they.