Pots Check Your Kidneys! Please Read!

[Guest maia]

WOW, that's all for now...WOW!

Thats about where I'm at now too. Wow!

[Guest maia]

Another thought. I cant even roll over sometimes without getting short of breath. HA! when i was there today he had me locate it while laying down-felt in my back just under ribs... roll over on right side-couldnt find it.. roll over on left side-it moved to my belly... Well, there you go! Unbelievable.

[Chaos]

Amazing! You go, girl!!! Thanks for posting and please keep updating us. This is fascinating.

Totally frustrating and SO typical of what I experience with so many docs locally. I get my records and wonder if the doc was even in the same room with me when I read thru them.

[Guest maia]

Amazing! You go, girl!!! Thanks for posting and please keep updating us. This is fascinating.

Totally frustrating and SO typical of what I experience with so many docs locally. I get my records and wonder if the doc was even in the same room with me when I read thru them.

Indeed! And thank you!

No kidding. They completely make **** up and i swear they count on the fact that we still at least somewhat find them credible and want to trust them so we tend to... Ive got copies of some records, called the doc on them, then got copies again another time and they were changed to say i was referred to a psych for agitation and irrational behavior when all i did was call and say what is this you wrote in my chart, that isnt what you told me, i would like it corrected please and a correted copy sent to me...and that we are somewhat disabled and dont have the physical stamina to do anything about it and nothing can be done about it unless another doctor puts in writing that they are grossly negligent. good luck of finding a colleague to do that. aargh.. sorry for the ramble. makes me sick.

Ill keep posting...

[Guest maia]

Read a few comments down on this thread, sound like POTS to anyone?

http://www.empowher.com/community/ask/does-anyone-know-about-nephroptosis-and-treatment-after-2-failed-surgeries-kidney-cont

1 in 5 women have a dropped kidney... the key to determining if it is a dropped kidney is if the symptoms are upon standing and resolve while lying...

http://news.google.com/newspapers?nid=1893&dat=19761226&id=zDUjAAAAIBAJ&sjid=LdUEAAAAIBAJ&pg=1458,7311756

[derekliz]

I am stunned right now!! I am going to have to re-read all of this in the morning when my brain is working better. I hope everything will be ok. How wonderful would it be if all of your symptoms go away when/if this is corrected

Liz

[Chaos]

Maia- Do you have EDS? Wondering if there is any association between connective tissue disorders and this problem.

Ironically, my mom felt a lump in her side 32 years ago (long before the internet and google existed) and was convinced that she had a "floating kidney" when she went to see the doctor. Still wonder how she came up with that idea as it sure seemed like she pulled it out of the blue back then. (Unfortunately what she had was a football size tumor on her kidney instead.) Maybe your doctor's comment about the young docs not knowing anything is true, since even a woman without the benefit of internet access or medical training knew about floating kidneys in 1981.

[Guest maia]

Thank you derekliz.

Chaos, That is what has me fuming. Apparently this was a very well known occurrence until maybe the 1950's and then all the sudden it disappeared. So 1 in 5 women are now crazy? Makes me wonder what antidepressent or anti anxiety med some pharmaceutical company created around the same time (and how did they get med schools to stop teaching it?!). That wonderful doc did say that docs these days are definitely not taught the same way he was.

About EDS, Ive been wondering about that a lot lately. I do have some of the signs but not all and a NP did wonder out loud many years ago if I had marfans. I will definitely be asking about it.

[Guest maia]

Ok all you POTsies. You probably already are, but if not, please sit down...

It is now official. Kidney is not where it is supposed to be when standing and when held in its propper place, POTS symptoms are alleviated. This has been confirmed by several rounds on the tilt table.

Please get your kidneys checked.

If you are in NY, there is a standing MRI somewhere in the state, not sure where, sorry. A fluoroscope can be done standing and laying down, and an ultrasound can be done standing and laying down.

[HopeSprings]

This is amazing. I'm trying to get a visual on this - so you were on the tilt table holding up your own kidney?? What do they suggest now? If you are in NY could you post the name of the Doctor you're dealing with or PM it to me. Maybe he could look at my renal ultrasound. Again, I hope this is your answer!

[Guest maia]

Yup, on the table holding up my own kidney. Strapped in, left arm all hooked up and strapped, head all hooked up, leads on... Right arm...not holding kidney, holding it, dropping it, lifting it... up and down, up and down, up and down on the table.... had ct scans done laying down with it in its normal position-where it goes back to by itself when I am laying down (unless i roll on my left side-because apparently it moves then also and this probably explains why i get short of breath when i roll over sometimes) and then again after standing and having it drop and then laying down while holding it in its dropped position.

Based on the tilt and all its recordings, this IS the answer. Now? More tests for research purposes and surgery (I cant think about it, its freaking the **** out of me!).

Sorry, Im not in NY but was just told there is the standing MRI there. The key is the visual studies of the kidneys must be done standing AND lying down. The only reason I think I was taken seriously without having these studies already done and in hand is because I am so skinny you can stand infront of me and actually see my kidney move when i lift it up and let it go.

Kick, scream, yell, chain yourself to a guerney, just get it visualized and documented in BOTH positions.

[Joann]

So glad for you, it sounds like you are going to have an answer and a solution! This gives me hope that I will get there some day also.

[derekliz]

There is a stand up Mri facility in Atlanta..just outside Marietta. Have some reading to do and hoping I can have this test done.

Maia, please keep us posted on everything. I am really intrigued by this and am wondering how many of us may have this issue as well. Will they be sending you to a surgeon next?

Liz

[Guest maia]

Thank you for saying that Joann. I keep posting because that is exactly my intent. I am willing to do whatever I can to help anyone else figure this out. I am asking for more testing to accomplish that and volunteered as a guinea pig.

If anyone reading this has any ideas or thoughts about testing please let me know and I will try and get that done too. I think the next tests will be bloodwork before more imaging so If any of you think any of your blood work results are relevant, let me know and ill see if i can get that done too. So far I think ive only had norepinepherine, b12 and electrophoresis tests done and urine cathecolamines a few years ago to rule out an adrenal tumor.

Im also having issues now where every time i swallow or burp my heart beats strangely. I think its because I have not been able to keep myself upright after eating for years and maybe somethig else is screwed up because of it?? I would really appreciate any insight into this also because im afraid to have surgery if my heart is beating in a wierd way and my cardio is blowing that off because my heart is supposedly healthy.

Derekliz, Yes. I already made an apt with one and today when I was told again that surgey is the fix I gave the name of the doc I am going to see. They are going to consult.

[AllAboutPeace]

Your story is amazing Maia!! Thankfully, you discovered that your symptoms were alleviated by lifting that "unknown mass", so you had that extra boost to strongly advocate for yourself. (And even the gentlest Potsie soul has probably fantasized about throwing around a few expletives after a frustrating ER visit or medical experience and even better to have discovered the cause of your own pots That is such great news!

Also great that you are sharing the news to help others. I don't feel like its an issue for me, but I do think about those people who have posted on dinet that their Pots symptoms are alleviated by wearing an abdominal binder.

I'll look forward to your updates

[Guest maia]

Thanks Peace. Ya, looking back it was pretty humorous. (I think there were a lot more than a few explatives, lol. That doc kinda got blasted with a lot of pent up frustration. oops)

More info:

http://www.e-radiography.net/radpath/d/dietls_crisis.htm

http://books.google.com/books?id=AnLlAAAAMAAJ&pg=PA333&lpg=PA333&dq=nephropexy%2Btachycardia&source=bl&ots=2OroR_wIJX&sig=t6kYTpbQL3njq36DCv4Gi9Ehd7g&hl=en&sa=X&ei=B_HUUdzFIvGt4AOIoIHADA&ved=0CDYQ6AEwAQ#v=onepage&q=nephropexy%2Btachycardia&f=false

http://books.google.com/books?id=SOYhAQAAMAAJ&pg=PA113&lpg=PA113&dq=nephropexy%2Btachycardia&source=bl&ots=_En2IZhYzm&sig=GpmU5utFH1ba0eqTypxcfb9jXnM&hl=en&sa=X&ei=B_HUUdzFIvGt4AOIoIHADA&ved=0CD0Q6AEwAw#v=onepage&q=nephropexy%2Btachycardia&f=false

Here is a modern one with tachycardia caused by dropped kidney: http://pretty-ill.tumblr.com/post/34022053730/here-a-picture-from-the-kidney-operation-scar-in

[Guest maia]

Light bulb went off last night. Before everyone left the ultrasound room they asked how i noticed this. I told them and said I had asked after i was originally diagnosed if something could have moved because of the work i was doing, normal one day flat out the next, etc... I told them i didnt question the pots diagnosis because obviously i have that but i think this is the cause. They asked who diagnosed me and recognized one of the names. After that everything was normal and there were no standing tests to do to confirm it because of cost effectiveness, everyones kidneys move, everything is normal etc..

[Guest maia]

http://books.google.com/books?id=20DyLuGabJcC&pg=PA2166&lpg=PA2166&dq=norepinephrine%2Bheart%2Bkidney&source=bl&ots=Ju3XpgNEWo&sig=nppeeuqkQ_UhxrIRaSOEA8RZSv0&hl=en&sa=X&ei=bqnVUbHCLPKp4AP65oDgAQ&ved=0CEcQ6AEwBDgK#v=onepage&q=norepinephrine%2Bheart%2Bkidney&f=false

Kidney and heart effects:

renin, angiotensin, aldosterone and the renal nerves... and norepinepherine, vasoperssin, angoitensin 2

[badhbt]

Maria can you please share what your symptoms have been? Thank you!

[kim5204]

please send me a message because I have the exact same thing when I lay on my left side you can feell it pop ovrr and laying down it goes where its suppose too standing up drops but it almost feels like it sits sideways when I stand. I am interested in what happens my doctors thought I was crazy to think that it could cause problems it hard for me to hold up though. I also have gastroparesis too though.

[Guest maia]

I just spent an hour typing out symotoms and a response to kim. my page refreshed and its all gone. ill be back later today to do it. short version, classic pots symptoms. i was called textbook too. i have a couple apointments and im going to the local Y to do an experiment in the pool if they will let me. I want to stand up in the pool and see if my pots bothers me??! Hugs everyone. Kim, demand standing and laying down imaging!!!

[derekliz]

Maia, is the water pressure from standing in the pool supposed to hold your kidney in place? Also, were you on any medication to lower your heartrate and did threy work... Just curious and trying to gather as much as I can ao I can talk to my dr and see if they will order a lying and standing scan for me

Thx

Liz

[Guest maia]

I dont know, but i read another poster saying pots doesnt bother him in the pool so im thinking anti gravity effects? worth a shot. they did try cardiac meds and they didnt do much or dopped my bp too low,e tc. besides, i didnt want to take medications that alter my heart when the problem was not my heart, in my mind why screw with the one organ i cant live without if there is nothing wrong with it. After reading a lot, i now firmly believe that. norepinepherine affects your heart. if you are producing too much norepi, all the blockers do is stop the norepi from making the heart beat too fast. they do nothing in regards of treating the problem which is the norepi and whatever is causing it. my short version theory, the kidney falls, starts yelling help in the form of norepi, heart goes omg, something is wrong with the kidney, starts yelling help in the form of tachy, downward spiral from there, lay down, kidney says thank you, tells heart everything is ok, heart says thank you by slowing down, we feel better....

derekliz, if you think you have this problem, please dont just ask. demand it. tell them you are not leaving without it and dont. if they flat out refuse, tell them you want to see the documentation in the chart that they refused and and why and that you are not leaving without a copy of it signed by them. I bet they will do it then, if not, got to an ER and tell them the same thing.

will post all symptoms later tonight.

[kim5204]

they did a standing lying down ultrasound and my kidney was normal lying down dropped standing. but I am traveling to london Ontario for ttt, valsalva breathing test, qsart the end of the month. let me know I cant hold it up very good.

[Guest maia]

Kim, there you go! if I were you I would have them do the tilt with you holding it up and not: hold it while you are laying down and then have them tilt the table. In the mean time, can you get in to a urologist?

The saga continues. I just dragged myself to my primary doctor who has been on vacation through this. which is kinda why i went to the er when i did. I wanted to know what the chemical physiology was behind this so everything could be tested so no one else has to go through this. they got me right in for an apintment. I told the nurse everything, wow, this is wonderful, you have an answer. I asked the doc my question, he said didnt really know. said norepinepherine really didnt have anything to do with it. said angiotensin did becaue it makes the heart beat faster. I explained everything that has happened with all the doctors. he stood up and touched my back a little and on my belly while i was sitting in the chair wiht my legs up. very cursory, and said ok. He looked at the ultrasound report on the computer. asked me if there ws any pain, i said no. I told him the ultrasound was baloney and explained again everything. then he asked if i had ever been to a psychiatrist and if i wanted to go see one. what?! what is wrong wiht these people?! I said, dont you want to feel or see it? This is where it is lying down, this is where it is standing, this is what happens. I stood up and held it up and dropped it, he saw it. he pressed on it. i got dizzy and almost fell back into the chair. he said sometimes you can feel yourk kidney because you are skinny and maybe you shouldnt touch it, big smile, ok, take care, and walked out of the room! Dont they understand even how difficult it is for us to get to them only to be blown off again?! I guess Ill be having surgery without a primary care doctor? need to rest, havent eaten, too shakey to eat, been up 8 hours already, not feeling well, symptoms later.