Doctors often want extremely obvious evidence before they go in any direction. Pretty sad, if you ask me.

I don't suppose I should say that women have an average of 7 years before a MG diagnosis; men only one year.

82% O2, no matter the cause, is hypoxemia. They consider 88% and below to be the time for oxygen. You need to have them redo the PFTs, have an arterial blood gas drawn, and make sure they do MIP (maximum inspiratory pressure) and MEP (maximum expiratory pressure). AND make sure they save all of those readings for you. Why? Because MG becomes worse upon exertion, which those consecutive numbers can reflect. Make that appt. pronto. Or, if you are this way again, dial 911.

That day that you could not take a deep breath was the day you should have been in the ER!! If you do have MG, that is a warning sign. Don't take this lightly. MG patients can tank quickly and severely. A good ER doc will do an ABG, PFTs (full, not basic), O2, check your heart, etc. This is just silly. Whether you have MG or not, you need to be in an ER when you cannot breathe well.

Could they have screwed something up during surgery and are now covering each other's behinds? Possibly. But surgery can also bring on an autoimmune disease. Sometimes, the antibodies are so busy attacking the tissues in the beginning of MG, they might not show up until later. Besides, MG is a CLINICAL diagnosis, backed up with tests.

Please do find a good N-O, one that is not associated with clinic or group you have seen thus far. Don't give them any records! Just say you think you have ptosis—can they look at your eyelids? Keep it simple. Don't even mention MG!

Personally, if I were you, I would be in an ER now. Did you know that O2 saturation goes even lower while we sleep, due to muscles become weaker while sleeping? I wonder how low your O2 is at night. A pulmonologist could also do an in-home, overnight oximetry, where you get hooked up in the afternoon and then return the equipment the next day.

Something is causing your symptoms and the doctor should not take them lightly. Hypochondriacs do not cause their O2 go tank like that!!!

I really hate to say this, but neurologists tend to be so arrogant. There are really good ones out there, who will do whatever is necessary to help someone.

Did your symptoms go from head and down or feet and up? This isn't always the case, but MG symptoms typically begin in the head/neck area.

Keep in touch, okay? I'm concerned that you are on the verge of a crisis (if you have MG) or another dangerous situation from an unknown cause. PLEASE, seek help in an ER or dial 911 if you can't move, breathe, or swallow well. Any one of those is enough to prompt a 911 call.

Stay cool, rest as much as you can, and maybe take someone with you to any appts. so they can verify what you are going through. Document everything, including photos of an oximeter on your hand!


Annie