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Hung Out To Dry?


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Hi All,

Let me start by saying that ya'll are so helpful to me, I lurk here alot and gain support, though I never comment. I'm having a huge problem

now, and need some "fresh" ideas.

I was dx'd in Jan of this year with dysautonomia-pots, and have some as yet undiagnosed autoimmune thing going on as well, docs disagree about fibro, and cfs. At least with the pots diag and the good luck of having a wonderful compassionate doc who treats it in my very own town, I got a little relief, in that part being treated.

Now it seems my luck has run out. After 7 months of seeing this doc, I had to move a few hundred miles away due to my husbands job. Tried finding someone in this area (haha) and was reassured by orig doc that it wouldnt be a problem for him to work with a pcp, and whatever other specialists I find here, and I could go there every few months.

I've been gone for almost 2 months, and can't get a call back from his office. I need to be clear the Dr. is truly wonderful, but the people between he and I are less than efficient, less than professional. When I talk to them, they say they'll call back and never do.

I've had some problems, have been very symptomatic with the stress of move, change of weather, etc...and luckily the PCP I found here is very understanding, but his office couldn't even get a call back with info on IV hydration, so they could do an order for me.

I am really starting to stress on this, and am not sure what to do. New PCP has referred me to new Rheum. and Heart Dr's, will they be able to help me?

Thanks for allowing me the vent. No matter how understanding my loved ones are, it's hard for them I know to GET it.

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I can completely relate to what you are going through. I was diagnosed with POTS, but it became quite questionable in the recent months. My PCP basically told me he has no idea what is going on with me. Then I moved from the west coast to the east coast, and I, too am having a very difficult time adjusting to a new environment, and especially the new weather. The weather has caused my symptoms to become soooo much worse, it is indescribable.

My troubles lie with my insurance transferring. It won't without an exorbinant price tag. I have not been able to see a doctor in a month, and I feel like I am getting worse everyday. At this point, I'm pretty sure I'm going to repack my bags and go back to Cali!

I'm sorry you are going through this, truly am. It is so stressful

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Sorry to hear that you are having such trouble getting hold of your helpful doc, trying to get past the support staff is the usual problem - they try to protect busy doctors but end up obstructing patients.

Have you tried writing to the doctor - that way your letter should be put in his pile of admin to do and he should see it himself (he may not even know that you have been trying to call). Try to include a brief list of your current symptoms, factors like the weather that seem to be affecting you and contact details for both yourself and your new PCP.

Hope you get some good medical attention soon,


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  • 2 weeks later...
Adding to Flop's idea, I've found that faxing a doctor can be very effective, too, for getting past the support staff. :P

I almost always fax my doctors. That way they have a hard copy of the "conversation" in my chart and it usually goes via computer directly to the doc (like test results.) It also eliminates the "he said, she said" and there is no miscommunication.

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I don't fax like I "should" because I am never ready that far ahead of my appointment with all my questions BUT, when I have more than I think I can remember, I do up an "agenda" and print out two copies so we both are on the same page and can go over things line by line.

Best regards,


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