AnnieB3, thank you for your offer. I am so very raw right now I am just taking the rest of the week to try to not let the new neuro affect me this way to the point of wanting it to end. I know I dont deserve that.

I went to U of Iowa Clinics and saw the pediatric muscle neuro as that is the only doc left that specializes without traveling which my duaghter told my internist she couldnt do at this point. I could tell my internist who is extremely caring had reservations. First she said we have to see if she will take you and then she said being seen here means they have full record access. Now some doc like my pulmo dont let what other docs say influence him. But this doc sure did. One minute she was in a hurry and shut me down after saying I should take vitamin D and I tried to answer it makes me sick. She responded she never heard of that.

I am getting pieces of reality back that is better than the terrified yesterday. But there still is fear as my breathing is this bad. This ped neuro saying my breathing was part of other things was the real bad part. My daughter said what if my mom stops breathing? She flatly said that wont happen. WOW. That sure means she has her mind made up on something that purely is not true. I have suspected that this new piece I am feeling might be part of the myositis but she didnt even offer that.

This old neuro I saw about me possibly having autonomic dysfunction was brought into the mix. That was bad. That was in January of this year after my internist said I think you have POTS. He didnt do many tests and tried to get me to admit I hyperventilate which would be an anxiety issue and that is all that is going on around the incidents I am having...he said dizziness tho it is far more complex than dizziness. That neuro did use the mental health card tho I told him no one would say I ever hyperventilate. It just isnt something I do. I havent read that docs whole report to this day because I scanned some of it and saw the really of base stuff like this and well it must be my own fault for not drinking enough water tho I tell all my doc if it comes up that I have to do water in a very mindful way as I have sicca.

The neuro said I think you have Chronic Fatig tho I pointed out the thing about that not having a breathing component. But it became obvious she didnt believe me. See the thing with the breathing tests is the Dr W my pulmo says he can eval me be looking at me and assessing me like he did last week. I dont know how she is explaining that all away unless didnt have time to go over everything. When I talk it over with my daughter, the test he did with me laying down trying to breath Jen said he said my diaphragm is not working correctly. This was previuosly confirmed at Mayo. With my mouth muscles weak, doing the pulmo lab high tech breathing test cant fully be evaluated becaue I can nolonger control my cheeks. Thats what affected the last 2. This is why he said he had to do the visual eval.

She said at first that the breathing tests could just as easliy be deconditioning. I know that is not the full story. I dont deny I have deconditioning. But when I tried to tell her what would happen ahd has happened eveh before I was deconditioned it was obvious she had made up her mind and she was having none of it.

I was so sick and miserable and upset becasue Jen thought she would be back in town by 1pm for a meeting at her new job. But they asked us to go to lunch to give the doc time to see a couple of the kids. I didnt think that if I took too much mestinon to get some relief from all the talking earlier it would possibly make me good enough to mess up some of the weakness tests and my talking strength. She also anounced that she doesnt think I have neuopathy. This is odd because her students went to great lenghts to test my numbness yet when they brought this up she never pursued it.

Gotta go. So tired today.
Again thanks Annie