This is a point that really was a problem at the appointment Tuesday. It seemed the more I talked the worse it got. And with a doc/system that is looking to dismiss the issue it is very hard.

I tried to make a list tonight and realized I could ask all you that have a breathing component. Honestly the simpliest way I have used in my journal is to say that it is harder work. That my breathing is down. Simple words. Docs want more.

What do you feel. What words do you use?

Annie59

Annie, It would really help to know what your breathing tests show. It doesn't really matter what our breathing is like, only yours.

When my chest wall muscles get weaker, my oxygen saturation goes down. I feel like my my chest is "tight" and I can't get a full breath in. When I walk around, my pulse goes up higher than it normally would. The heart is compensating for my lack of oxygen and trying to get my body more by beating faster. Does that make sense?

I know that neurologists tend to pooh-pooh pulmonary testing and say that it's all effort-dependent. Yeah, they mean to insinuate that we are not trying hard enough! That's a load of BS.

Has your pulmonary doctor ordered an arterial blood gas? If not, I would highly suggest you do that. Tests like that are not effort-dependent and can be very revealing.

Have you seen a neuro-ophthalmologist? Have they defined the fact that you have fatigable ptosis?

You may have to gather simple, yet concise and factual information about your health, without anything else to muddy the waters. Doctors think patients are "hypochondriacs" when they give them too much info. Again, only idiots would ignore clinical evidence that another doctor has found, like breathing tests.

Did your pulmonologist define your breathing as "restrictive" or "obstructive" or any other way?

What struck me, when I took some time to think about your post, is that you might be thinking that your appt. would've gone better if you only explained your breathing episodes/weakness better. Well, these doctors went to medical school and it's up to THEM to figure it all out. Don't blame yourself for their inability to help you!

I hope you can figure all of this out. Do not allow one bad apple to ruin your doctoring experiences.

"fatigable ptosis', is there a test for this? I have to see the clinic where the doc said I have mg in my eyes first including the droop. Had the appointment on the books to prep for cataract surgery so asked if I could have the MG discussed again too. I dont have a prominent droop all the time but did take photos to the appointment this week and my daughter showed them. They werent the best quality as they were on my phone. I had tried to get my daughters camera but with her new job starting she has been very swamped. Let me know if there is anything else I can ask of this doc as they are foursquare on my side.

Yes my breathing is diagnosed as 'restrictive' The test that proves diaphragm strenght cant be used because they list "my pucker' is not consistant before and after mestinon. Well thats because when the mestinon is in me my cheeks work. I told my pulmo that. I have listed as restictive by 2 local pulmos and the Mayo pulmo. The Mayo pulmo did a special moving xray of my diaphgram called a sniff test which proved part of my diaphgragm is not functioning. That exam room test last week where local pulmo had me lay down and try to breath and I had this huge reaction proved it seems this is the case. He pointed out to my duaghter that my stomach/lung area arent moving in a normal way like the diaphragm isnt working normally. I didnt know this till we talked Tuesday on the way to appmt. When I was flat I felt like I was being smothered so I couldnt track what he said.

I also have had blood gases. the last one did have an irregularity around carbon dioxide. But others I didnt really see. When ever I see my pulmo it is standard proticol to be scheduled in the university pulmo lab for computerized breathing tests. He is the director of the lab.

I do have 'tight' too. They kept trying to establish tight or soft. It seemed like they felt that tight couldnt be weak muscles. What is your thoughts on this assumption. This was the youngest student that said this. There was 2 students.

Boy eyes are giving up. Gotta go. Oh I remember one of the resp testing people said in Feb of 2008 that my results looked like myasthenia gravis. That was 5 months before I was admitted for the crisis. That was the first time this was said to me.

Annie59

I remember saying to my Neuro nurse, "its just easier not to breath" she totally understood, but I know certain Drs would probably just do the old eye roll...................how can they totally understand if they have never experienced it???