Myasthenia Gravis Support Group

Myasthenia gravis (MG) is a neuromuscular disease leading to fluctuating muscle weakness and fatiguability. The hallmark of myasthenia gravis is muscle weakness that increases during periods of activity and improves after periods of rest. Although myasthenia gravis may affect any voluntary muscle, muscles that control eye and eyelid movement, facial expression, and...

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unsure81 05/07/2013

I hope this isn't a really silly question....but when should you worry about breathing problems? I am having tests for MG and part of my symptoms include a pressure sensation in the centre of my chest along with a feeling of not being able to fully take breath, or taking the breath in stages (like how you breath when really crying) I sometimes notice it in a morning and my ribs can ache a little but usually it's when I'm trying to do too much (like get me and my 2 little ones up dressed and dropping off at school, after shower and drying hair or setting up at work etc) once I sit or rest it usually passes after 20mins? Thankfully I have no real problems with swallowing etc so I'm not sure if this is a cause for concern?

Thanks for all of your help....again!x

annkemp 05/07/2013

yea cause for concern
Do you have a good neuro???
You need to get your good neuro involved asap
this is a very appropriate question. When I had those issues I waited too long to get help......bad news...really bad news
Ann

annkemp 05/07/2013

are you taking mestinon
What is your treatment plan right now

unsure81 05/07/2013

Thanks for answering - right now I have no diagnosis or treatment plan. I'm in the UK so we don't have much say in who we see unfortunately. My Neurologist has seen me twice, done lots if bloods, a chest x-ray and an MRI but said my symptoms puzzle him ( I have one sided facial droop and eyelid, leg weakness and now the breathing but he didn't comment on it when I told him!) finally on Friday he mentioned Myasthenia and is running an AChR antibody and a CK test.

The problem I have is that I had these symptoms for 18 months 9 years ago (after that thankfully i only experienced mild symptoms and short flare-ups until 2 months ago) and after an AChR and tension test was told it was in my head - and I am seeing the same neuro! To be fair to him he hasn't come to the same diagnosis so far but I am waiting for the test result hoping to finally get an answer and some help!

The breathing worries me slightly but I don't want to panic and make it worse and just wondered if it sounded consistent with MG?

Thanks again :)

deleted_user 05/07/2013

Yes it very well could be MG esp with the way you describe your chest discomfort. Think overusing your breathing muscle I.e. chest muscles by your ribs and your diaphragm. I would thy to limit your activity until you hear otherwise. If you can rest between activities that would also be good. Also look up one breath count I our MG links. It is very helpful.

bweeds 05/08/2013

I refer to what you are describing as accordion breathing and it IS related to how well I am doing with MG. My problems are primarily at night when I first lie down.

Here is the link Mary was referring to. There are other discussions with links to scientific papers about breathing problems for those with MG, but this is a very practical way to evaluate your breathing difficulties with exertional activities:

http://www.dailystrength.org/groups/myasthenia-gravis-links-and-news/discussions/messages/14595487

b.

unsure81 05/08/2013

Thank you both for your replies and the link :) that is really helpful and gives me something to monitor at good and bad times. I am resting at the moment with no breathing problems or pressure and getting to 30 counts so I now have a benchmark to work from :) I am very grateful for all of your advice and to know that I'm not alone in this!

Thank you!x

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