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...
Hi everyone - I hope you all had a good weekend :)
As some of you know I've been having a few scary breathing issues, mainly at night - so my GP ordered basic Spirometry/Lung Function Tests as a starting point, which I had today.
The nurse who did the test said that the results were normal from an asthma/COPD perspective which is all she is trained to look for - but she noted that I struggled to blow a consistent breath ratio and each attempt reduced to the point where she had to give me a break and I then I was able to blow well enough to allow the machine to have comparable breaths. I was at the end of my mestinon dose and my face literally dropped as the effort took what must have been left in my system - which the nurse also noticed - bless her!! I then went for the Ventalin dose and she explained this should help me to breathe - but she then noted that I blew worse the second time around!!
I assume that this is to be expected with MG and could point towards fatigueability of the lung muscles as the nurse said people usually blow the same or better after Ventalin....or maybe this means nothing?? I have left a message for my GP to ring me but I am not sure if she will know what, if anything, this means so I thought I would do my research first and ask you lovely people....as you are generally WAY better than Google! lol!! Have any of you had this test or do any of you know what this result could mean?? I am having problems waking at night, not breathless,but feeling like I have no breath and need to take a quick, sharp breath so I am not sure if this result is something I should be concerned about and maybe push for a sleep study or more testing??
Thanks everyone :) x
As some of you know I've been having a few scary breathing issues, mainly at night - so my GP ordered basic Spirometry/Lung Function Tests as a starting point, which I had today.
The nurse who did the test said that the results were normal from an asthma/COPD perspective which is all she is trained to look for - but she noted that I struggled to blow a consistent breath ratio and each attempt reduced to the point where she had to give me a break and I then I was able to blow well enough to allow the machine to have comparable breaths. I was at the end of my mestinon dose and my face literally dropped as the effort took what must have been left in my system - which the nurse also noticed - bless her!! I then went for the Ventalin dose and she explained this should help me to breathe - but she then noted that I blew worse the second time around!!
I assume that this is to be expected with MG and could point towards fatigueability of the lung muscles as the nurse said people usually blow the same or better after Ventalin....or maybe this means nothing?? I have left a message for my GP to ring me but I am not sure if she will know what, if anything, this means so I thought I would do my research first and ask you lovely people....as you are generally WAY better than Google! lol!! Have any of you had this test or do any of you know what this result could mean?? I am having problems waking at night, not breathless,but feeling like I have no breath and need to take a quick, sharp breath so I am not sure if this result is something I should be concerned about and maybe push for a sleep study or more testing??
Thanks everyone :) x
Great responses here. Just to emphasize to Dan, that what he is experiencing is exactly what you would expect with MG. If the diaphragm is weakening the lower parts of the lungs don't get perfused which allows CO2 build up there and looks like restrictive disease. Since otherwise in the absence of lung disease (not diaphragm weakness) perfusion is normal, good oxygen saturations will be maintained until almost total respiratory collapse. If you are having breathing problems and the medical staff is reassured by O2 sats DO NOT let them close the door or the curtain. There is a reluctance to do arterial punctures, but venous gases will give you CO2 information which you can combine with the pulse oximetry's O2 sats which is almost as good. b.
I am really learning alot .
Unfortunately, I have consistently sent out of ER and lung specialist
saying my lungs breathing are fine. So I don't know what to do?
All I can is fight to get into the specialist earlier than 4 months and show him my positive antibody test and hope he understands all the tech stuff that you and others on this form do!
It is very frustrating to have to explain to doctors and even specialists what ought to be their job - I come across as a 'difficult' patient...but my breathing is getting worse..all I can do know is do the counting test and I can get to 43 at my worse I hope this means I am not in critical danger and that controls my anxiety?!
Thanks again I am printing out all the great info to bring to him when I get in!
Dan
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One other question IS the counting test a decent way of checking breathing?
And, Can Mestonin improve a patients objective breathing performance or does it just improve the patients subjective impression of the symptoms (help them cope) I know it doesnt cure MG thanks Dan
If you are resting and your breath count is still falling that is dangerous. Usually they say when you get to 20 head for the ER. But if you are not recovering from exertion and the count is falling, don't wait. I have just had one bad episode of breathing problems and it fell pretty fast--recovered with extra Mestinon on the way to acute care center, (we were headed to the ER, but drove past as I was recovering). They closed the examining room door! I had good O2 sats. Sometimes extra Mestinon is not enough--still don't leave home without it. b.
Dan
Dan - I hope you get some answers soon!! Good luck at the ER, let us know how you get on!!
Angie - wow, we're lucky to have you with the jobs you have had!! Thank you so much for you post - The nurse is a friend of mine and she inputed height/weight etc and showed me to sit up straight and how to blow - but she said my problem is something she knows nothing about (except for our conversations!) and so she is only guessing. My first blow was good by all accounts but I then needed to blow within 5% of my first breath (this will probably mean more to you than me! lol!),I managed another at 5% but then slipped from 6% up to 17% on the next few breaths and she told me to take a break! She said I was blowing about 460 first which she said is good for my height/weight etc (My mestinon wore off after that and my face drooped so maybe that explains the fall also?) but then she said I was struggling to get consistent blows of 410 after the ventolin nebulizer?? Does that mean anything more to you? I'm not sure if measurements vary here in the UK?! She then put the pulse OX on and my stats were at 84% so she asked me torun my hands under warm water and rub them together and they went up to 96%.....I assume that's ok?? I am speaking to my Dr on Tuesday about where to go from here - and will definitely ask about the sleep study - Good luck for you sleep study, let us know how you go (and what it's like!!)
Thanks again to you Beth for your replies, I usually get to 30-40 on the breathing count when I start to feel unsure if I should be concerned so thankfully I have not reached the dreaded 20! I will also keep in mind what you said about CO2 in the blood - would that be detected by the pulse ox??
Thanks again everyone :) x