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Back From Cardio, UGH!!!

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Hi All,

Went to cardio 2nd isit with her. She wants to redo all my tests. I have a holter monitor on right now, of course nothing ever happens when Im wearing one, maybe thats the cure) She has gotten no medical records Duke has the only full set and because of new hippa rules they cant send me anything but their actual records. So now I hae to request records from every place I have been, ugh.

New doc was kinda angry with me said I have to choose a doctor to manage my care and I shouldnt be doing it myself. She is also the one who said she neer heard of any autonomic problems being so severe. I handed her all the print outs. She didnt take them she just looked at me. I left them with her nurse.

I have so many docs prescribing meds that if i took what they gae me and how they told me to take it I would be in a coma right now. I am going to continue to manage my own care so they dont kill me.

So fustrating.

Good news is I am on my hubbys insurance as of Aug 1st. Got to wait to see what the pre-existing clause is.

So still cant find a doc willing to do long term disability papers for me. My short term is approved til 8/1. I have an appt with a psychiatrist on 7/28 hopefully I can get him to extend my std.

Onward with the search for a doc who will do my long term, does doc Grubb do it? If so how do I get an appt with him? Must be a long waiting list.

Thanks for listening


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gggggggggrrrrrrrrrrrrrrrrr. ( i seem to be saying that a lot lately!)

sorry for all the frustrations. the details might be a bit different, but i'm right there with ya & it continues to baffle me.

i second steph's thoughts about things re: your GP, records & the like but know that doesn't make things any less frustrating in the moment.

hang in there,


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Thanks for the ideas and support.

This is just once vicious circle with tons of hurdles. Was supposed to have the complete Mayo work up, even had it scheduled, then our company changed insurance carriers and NONE of my docs were on the plan. So I found and old friend who is a doc in south carolina and she has been doing all the paperwork for me, my GP.

Now that im going on my hubbys policy she isnt covered cause she is out of state and not a specialist. I can barely afford the copays and meds. Yadda yadda.

All I want is 1 doc, covered by my insurance to help me. I have so many docs prescribing meds, if i wasnt a nurse Id be in a coma if I took all the meds the gave me like they told me to.

One doc to coordinate my care. I dont need to be retested. I have been nuclear scanned, Ct'd with and without contrast, and ultrasound from head to toe. My blood olume is prob low from all the blood work they have done. I have given gallons of 24hr urines. I been on soooo many meds that didnt work. Oh and I was scoped both ends too, (joy) I vagaled out from the prep and wound up in the hospital.

I dont want to do it all again because the doc doesnt believe or know about NMH and POTS. I cant believe Im back to the your menopausal and have panic attack look.

Oh Well, my daughter in law is in labor, 100% effaced, 2 cm dialated and having contractions every 6-9 min. So we will be off to hospital tonight, went in today for a check, she didnt want to labor in the hospital so we came to my house and walked in the garden and picked squash and beans, and onion and made fried green tomatoes. This is the stuff that keeps me going.

Have a good night all. Thanks for listening and the suggestions.


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