[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.

[ginnie]

Are you talking perhaps columbia university medical center? I am just curious.From the sound of your note, the physicians nurse has blown you off so to speak. ["Non-Compliance?) It sounds like you are being blamed for something. I do not take well to medical staff, or a doctor and blows me off. I don't care what kind of dr. or staff there is, you deserve to be heard in a kindly fashion. I would get all my medical records (I do) and keep copies of everything. If you choose to see another dr. You have them with you and don't have to worry about the transfer between the physicians of your records. that can be a pain in the butt, and take some time too. Don't be satisfied with poor results from your current situation. If you can seek out other physicians, I would probably do that too. Kindness goes a long way toward healing, find that and your will have a great PCP. I wish you all the best. ginnie

[Annie59]

Columbia? not sure of answer to that for the moment. The noncompliance thing is really strange and over reaction. And actually I did get them some medical notes since the talks with her as I thought we were still on for 24th. granted this crosses specialties so one was eye doc whose hadns are tied with treating my eyes and most important doing my eye surgery till this is sorted out cause when I get 2 bags of fluids it like a glass of water in a lake. I get minor symptom help for 24 hours. I am not responding to medication...down to 2 and those arent going well.

This Gastro Doc is really a nice guy when I saw him last and his nurse then was sweet and fine. I did have a very very bad reaction to the colonoscpy he gave me. He was not happy. I think my neuro told him I should just get one of those and he might not want that circus again. He said he would sedate me totally next time which I had suggested them knowing my body and me would be som,ething to consider strongly. I never saw him after the test then. This nurse is new. The first time we talked it seemed fine. They couldnt find my reocrds. The next time was like talking to someone else. I told the office manager people are people. I said I caulked it up to we both were having a bad day (that was kind version). I said I just needed to report I was alot worse and those symptoms. If that was not what she wanted I could have gone back to my neuro to have him send more info rather than me calling. This probably not at this point a place I should go. I just wish there wasnt such loyality in this city to the univeristy 45 mn away where my old neuro is and my pulmo and internist and so on. It is rare to find one that didnt graduate from there.

Annie59

[ginnie]

I was refering to Columbia Mo. It has a fantastic facility. it is a teaching instute. I lived in Columbia raising a family. I was there as mayo clinic sent me there for trial study in auto immune diseases. I do try to refer people there as I spent 12 years inthat program and know the institution to be the best around. I moved there to participate in the program.
This place tops St. Louis in my opinion, my child was in Barns hospital for the better part of two years. Columbia is turning out to be alot like mayo clinic in their diaganostic abilities. There is even a research center for families. I only know patients in general (from what I hear), do better when they have that great team of doctors who can get to the bottom of things and work together. I was in Dermatology, but immunology, endocranoloy, all had different locations within the same huge building. You were sent to all the different clinics there as needed for diagnosis and treatment. When I think of the midwest, of course I think of my home state of missouri for awhile. I really hope you find all the answers to allow you to be more comfortable. ginnie