michiganjan Posted July 25, 2005 Report Share Posted July 25, 2005 I am not a doctor. I don't understand POTS. But here are some things I do know about myself.I have POTS.I have some symptoms of DI, but I really don't have true DI. My DI like symptoms seem to be nephretic (kidney) in origin rather than brain (pituitary gland). Also I talked with a world-renowned DI specialist and POTS is not something that is prevalent in people with DI. I am hypermobile, although not as much as some others I have met with POTS. I have been tested for Ehlers-Danlos vascular type and was negative. POTS is also not associated with ED.When I was only 23, I had my appendix and gallbladder taken out. Afterwards the surgeon told me that I have a generalized tosis. By this he meant that my internal organs are suspended on long, stretchy ligaments. He also told me that my one kidney was loose. I believe it was the left one because he was working on my right side and he said he had wanted to take the kidney and sew it to something in order to anchor it, but he couldn't really get to it. He told me it would drop when I stood up and then fall back into place when I lay down. He said it shouldnt' be a problem unless it got twisted and then I would have pain and know it.Now the rest of this message is strictly my own musings. A few years ago I read the writings of a Japenese doctor who did a small study about the "nutcracker" syndrome" as a cause of chronic fatigue and POTS in children. The nutcracker syndrome is the entrapment of the left renal vein between the superior mesenteric artery and the aorta (I hope I remember this correctly--MIchelle knows a lot about this one--please jump in here Michelle) I emailed the doctor in Japan and asked him how I could be sure this wasn't a problem for me. He asked me to get color ultrasounds and specified how they were to be taken and some were to be taken standing. I tried. I finally got my doctor to order the ultrasounds but when I went to have them taken, the person doing it didn't really understand the views the Japenese doctor wanted. And taking them standing was not an option. However we did get some pictures that I sent to Japan. The doctor there wanted a different view. And he wanted one standing. I consulted with a vascular surgeon here and had him read the pictures. I also consulted with a family member who is a vascular surgeon. The family member told me that when he operates and the left renal vein is in his way he divides (cuts and ties it off) it without giving it much thought and that those patients get along fine as there are other veins that supply the left kidney with blood. And those patients do not then develop POTS. That left me wondering if no renal vein is better than a pinched off one. Anyway, by that time I was tired of fighting to get the test done the way the doc in Japan wanted. I got no support or understanding from the docs here.Okay gang, here I go off on my own speculatory tangent. What if there are stretchy people who do not have Ehlers-Danlos but are just stretchy? What if my tosis and the fact that my left kidney is not even attached to anything means the left kidney is trapped in a nutcracker-like pinch when I stand and that causes the one kidney to either dump adrenelin or fail to make proper use of the desmopression that is sent to it from the pituitary, or both? What if stretchy people have this happen because the kidney is on a long loose ligament?It just bugs the heck out of me that so many of us with POTS are hypermobile and have this odd pseudo DI. I wish we could have a study where those of us with this combination of symptoms could all get the right kind of color ultrasounds standing up to see what does happen to the kidneys when we stand up. I know, I know. This is not at all scientific. And I am not all that smart. I don't have the medical background to even speculate. But has anyone actually studied this besides that small limited study in Japan a few years ago? I have heard that POTS is a brain problem but it seems to me that no one is looking very closely at the kidneys.I should be in bed before I get any more flights of fancy! Michelle, is there any way we could get some medical help to find out if such a study is feasible or even worthwhile? We already have the population to do it. Ultrasounds are not invasive or dangerous. Is there anyone out there who knows the right kind of Doc who is smart enough to decide it this is worthwile or not? And how would they interpret the findings? Michigan Jan who will take her musings off to bed.P.S. Jeff finished round 2 of the chemo--overnight in hospital again. They kept him the next morning awhile as the one chemo drug made his magnesium low and they gave him a bag of it via IV before letting him go. That was on Friday morning. So far he is having a much better time of it than last time. He can actually eat and drink. It's not over yet though because he is wearing that fanny pack that is pumping the 3rd chemo drug in him until Tuesday. He is losing his hair. Will probably be completely bald soon. And he has tacycardia either from the drug or from low blood. Still he feels better than last time and the cancer symptoms are much better. Please keep praying. It is going to be a long battle. Quote Link to comment Share on other sites More sharing options...
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