[Annie59]

I dont know what some of you do in these cases. Maybe some of you have the same thing. I have a scheduled appointment at the univeristy with the internist there Friday, tomorow and I dont know whether to go. Mainly I dont know if I should, if worth it, if need to. I need another persons brain on my case. That is a good piece of what I was hoping for from my caseworker. I need another voice, another set of eyes. I needed someone to take over when the 2 calls I made Monday were too much for me nixing plans for doctor calls till breathing got better.

My digestive/fluids issue is continuing to decline fast. I am officially very scared. I realized this morn I have 2 choices. I give in and let the local gastro office have an open release to all my medical records from the university as the angry nurse wants or go to the appointment tomorrow and see if internist can help me at university in a quicker fashinon than the university usually moves. This doc was opposed to me having fluids in late 09 for the beginnings of these symptoms so hope she wont be defensive about this. She has been less supportive and as of last visit wrote that my muscle weakness is either somatic or neuromuscluar throwing in that tests have not supported neuromuscular to some extent.

Now as Chloe Atkins and her partner learned (Chloe from the book on MG) when the medical records come to a doc it is toss up of how you will then get treated. This is the case with letting the local docs nurse get any and all records she wants. When I called to say I was getting alot worse I got a big door closed in my face. From nurses tone and the office manager who I called to give them me from another viewpoint they have gone into 'what is she hiding'. The manager came out and said arent your doctors in at the univeristy and why dont you go there for treatment?' I calmly said it honestly is financial and protective of my famnily who would have to drive. I said we are hoping we can see as many doctors locally as possible. I said my endo is there as there was no endo in town in 07. The manager said she would talk to the doctor (who I'd seen in 2005) if he would see me.

Just realized I may not have told you that since I moved I found that I was discharged (via a certified letter I never got) due to move, from the local gastro 'for noncompliance' after the last call to the nurse pretty much begging to be seen sooner. I had to tell the office manager, end of last week, that I never got the letter due to the move and also that is why they didnt get my medical reocrds as I just had to stop everything and get moved. My neuro who referred me there got this letter too. That is how I found out as I still never got the letter. What is the big drama around ceritified? If they had sent it regular mail I would have gotten it!

At this point neither option sounds like it will work out quick enough for how sick I am. Or possibly at all. I need fluids now every 3 days. And actually I might get more sleep( and sympotm relief) if it were every 2 days. If the doubts from the university affect the doctor who sees me locally, it will mean not believing half of what symptoms I report. That made worse if I have a symptom that isnt classic to a certain area that maybe it.

So do I bite the bullet and sign the release for the university to send all the records? I had tried to send the nurse relevant records after talking to med records based on what I had and what areas they most want like liver doc and so on. This was I guess the first twist. The nurse said 'WE dont do things that way!!' Next pursue the other option and go see the univeristy tomorrow and tell what is going on and have her referr me to hopefully a good egg there which my daughter will as it means more driving long term. But also a doc that more likely than not will side with the other docs there cause that person will have full access. My internist has referred me to some good docs in the past like my pulmo who was my 2nd one there as the first on was not doing anything after first visit. Chloe's book is very affirming in I get and have experienced so much of the doc stuff she had. But for now I am in big trouble. I have lost another 5 pounds at least and immune sys worse I suspect cause I am not getting what I need from food and such.

Gotta go. If any one have thoguhts or suggestions it would be appreciated.

Annie59

Forgive that my writing is likely even more hard to understand at times. I am having more difficulty with putting togther words and finding them in my head in the first place.