You should contact your neurologist. I started having a similar symptom, calling it the icky core sensation. I would describe it very clearly to your neurologist. My second neurologist let this symptoms slip. Hang in there. Hug.

are you taking your mestinon????with MG waiting has never helped me...rest has but if I am getting worse.....treatment was my only solution.

I don't take a nighttime Mestinon dose. I don't have an RX for Timespan. This is the worst in the morning and eases a bit after a few hours. I'm on another day of full bedrest. The Mestinon has allowed me some short bursts of time out of bed. I'm fatiguing very quickly.

I will probably put a call in tomorrow if I continue with this chest issue.

Elinora-What did it turn out to be for you?

Carly

I am a mess of symptoms and for certain have something in addition to MG, so I have not figured out what mine is. At least one person here has talked about that feeling in relation to breathing issues.

Hi Carly,
I think you should go to your doctor, preferably your Neurologist.

Yes - your oxygen-level/pulse ox - is important.
But for MG patients? Just as important?
And actually, more important?

It's your blood-level carbon dioxide.
Higher-than-normal carbon-dioxide, in the blood stream - causes many breathing problems, and much shortness-of breath (SOB).

A build-up of CO2 in the blood stream?
This is due to poor exhalation.
And yes - this is due to poor diaphragm action.
This can be caused by MG, which can hit the diaghragm hard.

Definitely - go see your neurologist.

This is the layman's explanation, that was given to me, about this problem.
A build-up of CO2, in your blood stream?
Tells the brain - to send a signal to the diaghragm - to breath faster - to get rid of the CO2.
This causes the patient to develop rapid, incomplete breathing, which can lead to gasping and SOB.

When the brain senses that the CO2 level is STILL too high?
The brain will continue to send signals to breath harder & faster - and the whole breathing pattern becomes circular, and gets worse.

If you think that your diaghragm - is not expelling enough CO2?
Try counting, along with your breathing.
Try to deliberately make your exhaling: 2 or 3 or 4-counts longer than your inhaling.
If you can't do this?
It could be that your diaghragm is being affected by MG.

An arterial-gas blood-draw: is one way, and an easy way - to get a reading of your level of carbon-dioxide in the bloodstream.
It's no big deal, just another blood draw, like many others.
- Ross

Hi Carly - I hope you are doing ok. I agree with everyone here and if this is MG related you should be seen ASAP.

I just have one question - you say it is achey but is your chest sore/tender to the touch?? I also have the pressure sensation and breathing issues when I overdo things, thankfully for me they always settle if I rest, but I started to have a tender pain in my chest which I was ignoring until I saw my Doctor last week and was Diagnosed with Costachondritis. It seems like there is a link with auto-immune and can also cause chest pressure/breathlessness so I thought it might be worth a mention to you.

Good Luck - let us know how you get on! x

I woke up with the same issue this morning. It has abated somewhat and my breathing is decent with Mestinon on board. I'm going to sleep in another bed tonight and see if this is not just a mattress issue?
I will try the counting/breathing test with DH's help.
My pulse OX is still in the 90s, but I know that isn't the number that truly matters. If I wake up with it again in the morning, I'm going to go in to the PCP for a blood draw and also call my neuro to be seen.
I do have paraspinal myopathy and my breathing muscle tests (MIP/MEP) were not perfect a few months ago.
Things could be progressing. I sure hope not!
Thanks for the tips.
Will keep you posted. Thanks for your input. I sure do appreciate it!
Carly

See your doctor but also make an appointment with a neuro that specializes in MG ASAP. It can take a long time to get into them and they seem (at least for me and what I have read on here) to be one's who take the best action.

My general doctor stared me with Mestinon. My condition did get worse. He later started me on Prednisone. My regular neuro didn't so much. But when I finally got into to see the specialist at a teaching hospital he took some quick action because I was in crisis.

The specialist wouldn't even see me without a diagnosis from another doctor (or at least it would take a really long time - months - to see him without it).

My latest mestinon increase was due to this same feeling. It was like the tightness I get when I am sitting and bend at the waist. I always feel then like its hard to breath. This time though it was a constant feeling for 24 hours. The dose increase did help as well as rest. I hope you get help soon. Take care Carly! Hugs & Aloha

More accurately?
I should have written:
Poor exhalation and poor diaphragm-action - can be one cause, for a high-level of carbon-dioxide in the bloodstream.
Obviously, there are other causes for a high CO2 in the bloodstream (beyond my experience).
- Ross
(... but you knew what I meant, right?)