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

I have been real lucky not to have any serious breathing issues but I'm sure someone who has will jump in here and give you some good advice. You have come to the right place this is a great board for MG support. WELCOME!!!
Mike

Your breathing symptoms are much the same as mine now. Also when I start to talk, I get a pain in my ribs and am short of breath. I am just 6 months into diagnosis. I called my neuro. He is weaning me off pregnisone (will take 6 months) and put in for approval for IVIG.

If I were you, I would call your neuro tomorrow and let him know. My breathing issues started when it hit 70 degrees. I am very temperature sensitive. It is suppose to hit 80 next week here and I am concerned for worsening symptoms.

Try not to style your hair for a few days. Lifting my arms above my head to wash or style my hair, really sets off my MG shortness of breath. Let us know what your neuro says.

kathie

You can have an MG crisis and not have any swallowing problems!

I don't talk a lot on a daily basis. When I had my MG crisis, I had generalized weakness and my breathing was severely bad. I had no problems with my swallow or speech.

Right now, you are having trouble breathing in. At the VERY least, you should be seeing a pulmonologist. They are the only ones qualified to assess your breathing. If you can't breathe in well at all, that is the time for the ER. Period.

You can't tell how quickly MG will get worse or how severe it will get. The best place for you is in an ER. There is no way you can tell by "feeling" if your O2 is tanking or if there is carbon dioxide building up in your body, causing damage to your tissues, heart and brain. When you sleep, muscles get weaker and the O2 can get even lower. During my crisis, my O2 went down to 66%. That is dangerous!

When in doubt, go to the ER. You can't live without being able to breathe.


Annie

So sorry that you are having a hard time... Waiting for a diagnoses itself is so frustrating, much less having worsened weakness

I also get a pressure sensation on my chest when I can't breathe.. The first time I noticed I had something wrong with my breathing is when I went to sneeze, and that breath you take before the sneeze didnt' really happen.. soon after that started within 3 days or so things worsened fast.. I was so winded talking, couldn't read to my kids (I had a 1 and 2 year old).. couldn't walk more than a few feet.. Showers made me just about collapse , the heat really really affects me.. makes me like a lump of jello on the floor! Finally I crashed.. I coudlnt' breathe, my pulmonary tests were really bad and I got admitted for IVIG.. which thankfully worked wonders!

As others said - don't risk it, when it comes to breathing.. let your dr know your having that chest pressure sensation.. it was so hard .. they were trying to diagnose me, so would do a test.... wait for weeks for the results, then do another.. all the while I declined.. Good luck, keep us updated! (fyi - I still have no formal diagnosis)!

Thank you all for your help and advice I am so grateful!
Kathie- I am in the UK and our system is a bit more restrictive I think? I did email my neuro a couple of weeks ago when things were bad but he didn't address the breathing at all and just scheduled an appointment for a week later!! I took a few days off work which thankfully helped so the breathing had settled by then - not that he asked me about it anyway, he just focused on my facial and leg weaknesses!
Annie and Bny806 - thank you both for you help - you both seem to be having a rough time too, bless you! I will take your advice and not take any risks (and leave the hair styling - this with my droopy face and duck/limp walk has all the makings of Quasimodo....I best avoid Disneyland! Haha)
On a serious note - thank you all, it is a huge comfort to know I am not alone.....as unfair and hard as it is for us all!
Eve.x