Does anyone have support people other than family and how do you get them and from what agency or place? I have concern for my daughter and also need more myself. I am clueless how other people handle getting the kind of support that family can give. Someone who knows your condition and can take you to ER.

Annie59

Annie, I think there is going to come a time when you have to call an ambulance. That's what ambulances are for: to get you to the hospital when there's no other way for you to get there. I don't know the system, but I do have the impression that certain kinds of social services only fall into place after an emergency hospital admission.

Things were slowed down for sometime by the county agency that was providing aid to me. That was all I could get home care wise as my diagnosis was only Sjogrens and before undiagnosed weakness. Apparently the Ill And Handicap Waiver was getting slow approval due to her. When I met last with manager/nurse for the agency I said my biopsy was being held up much to my doctors dismay. Suddenly she was concerned but more about her involvement in that delay than my health. Shortly after this the the aproval came thru and I switched to one of the many private agencies thru the worker that then took my case.

Me going to ER alone would be very possibly worse for me. I have been thru going and being worse when I left be cause of my being too sick to communicate well and lack of knowledge of MG along with past records perhaps at that hospital. This recent visit is the best I have had but surely my daughter made it better by far. Tho the doc was really nice the male nurse was as bad as the last doctor I had there that made me afraid to go back. Before he gave me the new medications I said if any of them cause dry mouth it could make me worse. He did not at all acknowledge my words and just kept his head down and quickly put the medication in my IV.

When the flood was here in 08 and I had just gone thru the crisis and was new at mestinon I got worse and went to ER myself. It was chaotic and and strange to begin with because part of the hosp was under water and shut down so the ER was make-shift. There was no privacy only curtains. I got this nurse who got real mean with me around a blood gas being needed. I finally agreed but then the person who tried to do couldnt find the spot and was digging in my wrist. She stopped and left but then the nurse came in and got ****** and I ended up in the bathroom crying like a baby. ERs are very hard for me I likely dont understand the entire reason. I was truly truly grateful that this one Saturday was with such a kind and good doctor.

The only reason I am getting follow up from that visit is that my new neuro told this doc to have me do so. My family doc who they called first didnt and wouldnt do that. He sides with the univeristy on my case and only pushes pills.

Annie59