Alice md, I maybe unclear here as I am still 'not right' in many ways from the stress of this week. Just ask if something seems weird.

About your remark...I was just gonna post to ask more about what I am experiencing. It has changed again. I know he feels a bigger urgency certainly than any other of my docs to get me diagnosed firmly NOW! Myself and my duaghter have been in close contact with him in the recent weeks as I have worsened. He is a very nice guy and kept hope up that my current neuro would step up to the plate esp since he had already had 2 conversations with her this year alone pushing her to do so. But now he has shelved that and knows he has to for get her.

I see the pediatric muscle neuro there Tuesday who he is on a treatment team with. He was concerned when my daughter called that I was coming that it would be too much for me and make me worse which it did. He knows from my history with other docs not necessarioy my current neuro that what I have is probably MG but I currently have a diagnosis of myositis in my face and myositis can have very similar symptoms as MG. Dr W my lung guy knows it is gonna take a neuro to treat aggressively what I have. He is helping getting this new neuro on board.

About a sleep study. He knows that being somewhere other than my home because of my sicca brings up a whole other set of problems. I would have to be given IV fluids and or have high humidity in the room to counter the dry air of a hospital. 3 years ago when I was looking into a sleep study for another doc it was my experience they dont do accomodations since they want all the problems to come out. He knows I am so fragil now that that would be dangerous. We went over that my mestinon is working for me and what helped or not. The raodblock to taking a high enough dose is the very painful -bowel cramping diareah I get the doses that work best. And sleep used to be an issue but is not now. I have asked my current neuro 3 times about some to help with the diareah but got nothing. I told Dr W, my lung guy I just discovered since 10-14 when I went up to 8 hydrocondone a day for surgery on mouth and the myositis headaches that I dont get the diareah side effect then. So for now I can take lareger doses.l Yesterday I was back up to my 08 and even a little more. I was on 120mg total then. Yesterday it was about 200mg total.

I am not sure what you consider noninvasive respiratory support so you need to tell me more about that. My duaghter has asked why I can have oxygen to a couple of docs as she worries about my breathing. Dr W said for medicare it takes a certain documented level of prob to prescibe it. With the variablity of MG that can be a trick. My daughter asked yesterdaY IF had a call from there as she hoped the 2 tests I did manage to get thru in the lab would prove more. I had just finally been tested later in the day for the first time. This was after pushing the point that I am always stronger and better in the morning. This took him to sched tho personally as all his staff would never so this.

The 'walls' are worse. This has been a terrifying week. I feel that there is somethign new going on that is causing spasming thru esophagus/tubes into chest. This came on the week I ignored the signs to stop when my breathing was getting so weak and kept talking to my sis about my mom to help. Yesterday was the first time I had a real shift. It was at about 2:30 after a 30mg dose of mestinon about noon. I started to feel it about 2pm. I had gotten alot worse again because my home aid came at 1pm so had to talk some. It was a juggling act. I couldnt take too much hydrocodone as that would depress my breathing. So I cut back but timed the doses to stop the impact of the mestinon on my bowels.

I would be intersted in hearing what you meant by noninvasive help.

Annie59 now if someone would just come hold me a little while.