What if . . . my musings on the relationship of .

[michiganjan]

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.

[steph37822]

oops

[Guest Julia59]

Jan,

First, I'm happy to see the second round of chemo went well for Jeff. you are both in my thoughts and prayers all the time. He also sounds like he is holding up well. To me that sounds like a good sign. My husband's brother held up well and was able to eat also. Your husband should eat as much as possible to keep up his strength----when he is able to eat.

That was a interesting post of the EDS/kidney connection. There is an connection somewhere. They need to study much more about these connections----but unfortunately it looks like some docs---(like the one you encountered) aren't willing to look outside the box.

I sometimes wonder about the "female" connection-----meaning the medical community seems to correlate POTS with anxiety/mental illness rather then thinking of an actual physical connection.

Each day the well meaning Docs and researchers are losing opportunities due to uncooperative physicians who refuse to believe that POTS/dysautonomia is real. This seems to happen particularly to the "female" population. This leads to a loss of study subjects for the very research Jan is talking about.

I have seen so many brave people---both male and female help in the research of dysautonomia. Unfortunately there would be a alot more people added into the studies if their doctors believed in the diagnosis and wanted to help them along with the dedicated medical community who do this research. It would be a win/win situation---and they refuse to realize that.

It's amazing how just ONE DOCTOR can truly mess up a persons life by misdiagnosing them with something else---thus preventing this person from getting the answers behind this disabling condition. How tragic is that.....

Julie :0)

[calypso]

Jan,

What is DI?

And also, glad to hear Jeff is tolerating the chemo better this time. I'll continue to keep him in my thoughts.

Amy

[michiganjan]

Amy,

Thanks for your thoughts and prayers for Jeff.

DI is Diabetes Insipidus. It is NOT at all like diabetes melitus (the more common diabetes) which has to do with insulin.

DI is either a failure of the pituitary gland to make desmopressin or a failure of the kidneys to make use of the desmopressin made by the pituitary.

Desmopressin is the antidiruetic hormone. It is made by the pituitary and used by the kidneys to concentrate urine. A person with true DI urinates large amounts and must drink almost constantly in order to keep the fluid balance in the body.

I, and some others on here do not seem to have a true DI, but do have issues with urinating too much and not concentrating the urine.

I do not concentrate my urine, or concentrate it only rarely. I have had some tests done (modified water deprivation test) and I have tried taking DDAVP--the synthetic form of desmopressin. The results of my experimentations has led my doctor to believe that my pituitary works fine and the disfunciton is at the level of my kidneys.

I think that in studying POTS and hypermobility that they should also look at the kidneys.

To find out more about DI just do a Google search on diabetes insipidus and you will no doubt find inormation.

Michigan Jan

[sue1234]

I wanted to bump this up. This is 5 years old, but relative to what I posted last week. After I posted about finding out about Nutcracker Syndrome, I have ran into this old post. I didn't even think about the DI connection! I mean, I thought about the aldosterone portion of blood volume, but not the DI part. I know there are a few of us that have a weird "DI, but not DI" problem. And, as this initial poster stated, he believed that researchers should look at the POTS/kidney connection. As he stated, to start with, just having a screening ultrasound done would help.

[firewatcher]

Sue, there has been some research done at Vanderbilt with Nephrology and POTS:

Clinical Nephrology article

Again, it is something that relates, but in a yet to be discovered way. The kidneys and heart are intimately connected by several feedback loops and few docs even understand that!

[sue1234]

Firewatcher, thanks for the link. It was interesting, and like you said, mentions a kidney relation once or twice. It seems they have not looked at the kidney other than the typical mechanism or renin-caused hypertension. It doesn't seem like they have looked at the kidney from a "mechanical" point of view. It would be nice if they could look at a few of their upcoming patients and even see if blood flow compression from the kidney is a possible issue.

[issie]

Are there any kidney specialist looking into to these things? We know the renin/aldesterone connection. Now there's the connection with Dibetes inspidus and possibly a compression on the renal artery. All connected to the kidneys and can cause issues with blood pressure management. I have found that I can not lie on my left side. Not only do I get severe heart pains, but my kidney/back hurts on that side too. I don't know if there is a connection. But, lying on my left side will bring on an intense POTS eposide. So, something to do with positional situations - make me worse. Also, I feel like I'm smothering and get severe anxiety. I haven't checked my bp or pulse when I do this. I guess I could to see if that is causing a spike or drop. It definitly speeds my heart rate up.

Interesting, ladies - keep the ideas coming. Hopefully, between us all and some doctors willing to look into these things further - we'll come up with some solutions.

Issie

[comfortzone]

Dunno much - but I have some issues that are pots-like my entire life - but only recently got the dx of the hypermobile eds... I was told that this is common - eds and pots or pots-like dysautonomia because of how we're wired up.

Because of being on the hyperadregnergic side of things - I had studies done for labile b/p or what was perhaps originally called orthostatic hypertension ... but we decided to let that rest for now - as the monitoring needed for a definitive diagnosis on this - would (per neuro and eds doc) virtually need to have you monitored every second of every day during testing and maybe lying down strapped to a table which they told me has been done before but it's so extreme... my measly 24 hour monitoring was a huge pain in the butt and arm lol... so I didn't volunteer for extreme measures - labile is labile I guess...

Anyway my b/p turns out thus far to be just essential hypertension with ortho intolerance ......but an incidental finding was one big kidney and one normal kidney - the big kidney turns out to have a double collection system within it with two separate ureters exiting the kidney - that eventually join as one before hooking up to the bladder.......prolly nothing but I do know that's 'me'....

Also my sibs and my dad and myself have days out of the blue every now and again where we 'diurese' or void like crazy with no fluids in........so weird - to each of us - but when talking one day - we all shared we had the same experience.... Might not happen every month - but more than twice a year .... Just going to the bathroom all day long...without any 'reason' - no extra fluids on board etc. Then back to normal

Okay that's all I know - blessings your way ... 'Cept that my 'huger' kidney is tthe left one - and the geneticist in SFO wanted to know for sure 'which' kidney it was that was with the extra system......dunno why but it was important to him...or them I should say.