Let's Mess With What Was Working!

[firewatcher]

Hi Everybody!

Just got back from yet another Dr.s appointment and I am soooo frustrated. This endo (#2) says it is not DI and does not really want me on dDAVP till we know what we are dealing with, however he is allowing half a dose once a day because my nephrologist and primary are insisting on it for symptom relief (so I can walk to the bathroom instead of run.) He has referred me to an older endo (#3) but I can't see him till November. My primary has lowered my Inderal dose to once a day because of supine bradycardia (41-48 bpm awake, who knows what asleep.) My head hurts constantly now, the tremor starts up again when the Inderal kicks out, and my pulse pressure narrows to less than 18mm/hg and my heart rate jumps up and around when I stand still. My primary Dr. did an orthostatic BP measurement today and my BP was OK, but the heart rate went from 61 supine to 101 upright (but it would not stabilize, it just quickly went up and down from 88-101, the nurse was a little freaked out, so she averaged it at 96.) No one is willing to give me a diagnosis of anything, but they are at least agreeing that it is not normal. I guess I'm not sick, I'm just not well. The knot at the end of my rope is getting frayed, no wait, those are my nerves.

Jennifer

[lorrie]

Jennifer,

Sorry about all this indecision on the doctors' part. It is enough to drive you nuts. What testing did the new doctor do to rule out DI? Please do your homework on this doctor and be sure he/she is knowledgeable about POTS, NCS, etc. I know from experience that a wrong doctor can cause lots of problems...lost money, unnecessary testing, frustration, delay in getting a firm diagnosis and stress.

Best of luck to you as you figure all this out and get to the RIGHT doctor. Hugs!!

[firewatcher]

After hearing from three other doctors that you don't "just get" DI, my primary Dr. insisted that I go to a pituitary specialist. This last test was a blood/urine Osm that was going to be used as a base for the water deprivation test. The Dr. that was doing it said that my daily urine "dumps" when the dDAVP quit were due to overhydration, so I limited my fluid intake while off the dDAVP for several days as I waited for the lab order to be mailed to me. Anyway, it was late, so by the time I had the test it had been 6 days and I had lost 4 pounds and was not in good shape symptom-wise, but managed to concentrate my urine and my blood to almost normal levels (760 Uosm/ 298 Posm) He said that if I could concentrate to that level, no matter how long it took, or the circumstances, I had adequate ADH. It was just a question why and under what circumstances I could release it. He has heard of POTS, but I have not yet found any Dr. who knows more than what the letters stand for. I am one of those annoying patients that brings in articles for my Dr.s to read, so he understands that POTS can do things that look like DI, but that DI can do things that look like POTS. I really hope that Dr. Biaggioni at Vandy will have some answers, I just have to hang on till November. Thanks for letting me vent. My husband just gets this glazed look when I start talking medical stuff, so you are all my social support.

Jennifer

[ajw4790]

Hi,

I hope your appmt. at Vandy is helpful and that you find some answers. I wish I had some words of wisdom or some help to offer, but I just wanted to say that it sounds so overwhelming and frustrating. And that although family sometimes does not understand or want to hear more medical stuff, many of us understand where you are coming from. Venting and sharing is good. I hope you find more answers soon!