Guest maia Posted September 3, 2013 Report Share Posted September 3, 2013 So I was back in the ER again this weekend with another bout of chest pain - priamary doc didnt want me to come into the office for an ekg. The monitor showed pvc's, svpb's. sv tach, and tach, with bp swings and o2 sats going from undetectable to mostly in the 80's. I was told it was o2 the machine. Then a doc had me sit up and asked me questions until i couldnt breathe and when I couldnt breathe he told me to calm down. Gee thanks Doc, tell that to my norepi. So when he left I decided to look in my chart. Guess what the current diagnoses in my medical chart are... Depression, Anxiety, and Asthma. What?! Seriously?! Quote Link to comment Share on other sites More sharing options...
Science girl Posted September 3, 2013 Report Share Posted September 3, 2013 Oh Maia I feel for you on that one! I would go to another hospital if you can. How are things going with the patient advocates? Can they help you? Quote Link to comment Share on other sites More sharing options...
Guest maia Posted September 3, 2013 Report Share Posted September 3, 2013 Oh i wish i could Sciencegirl! Unfortunately its a choice between this one and the one that said -on that first kidney scan- that my kidney was normal and did not move -and a bunch of other stuff that made me leave their care a while ago. I swear Im going to lose it. ADDED: Missed that bit about the advocates sciencegirl. Not well. I recieved a letter explaining a thorough investigation. They determined that results of the ultrasound were indeed normal and accurate and they aplogize for any mis information given to me by my doctors. Quote Link to comment Share on other sites More sharing options...
badhbt Posted September 3, 2013 Report Share Posted September 3, 2013 It is VERY frustrating dealing with the medical world, and I even work in it. It has opened my eyes on how I treat my patients and their concerns. I have been shrugged off many times and told it is just "anxiety" Example, I have tremors pretty much all the time, even when relaxing...watching TV... you can't have anxiety all day long. It can get tiring having a chronic problem, but it makes it worse when you have to spend so much energy trying to convience other people.Hang in there, I believe you, and I also think you might be able to help other people. Stay strong. Quote Link to comment Share on other sites More sharing options...
issie Posted September 3, 2013 Report Share Posted September 3, 2013 Dave, My father got Guillian Barre from a flu shot. It nearly killed him and there is lasting neurological damage that has not gone away. I also feel that a polio vaccine triggered my POTS when I was 8 years old. It also triggered my sisters OI and a friend of ours has some sort of dysautonomia - from the same vaccine from the same doctor. Here's a BIG clue. Issie Quote Link to comment Share on other sites More sharing options...
davecom Posted September 3, 2013 Report Share Posted September 3, 2013 Dave- I considered the patchy explanation, but the latest neuro thought it didn't make sense because the samples were taken within inches of eachother. That first biopsy was reviewed by two other pathologists and they both agreed it was positive. Simply can't explain what happened with the other two. No, the burning has gotten worse over time, spreading to other body parts. I'm sure I have neuropathy, but is it causing the POTS, I dunno. I just like things to make sense, consistency - so I can be sure I'm heading down the right path. I agree with your method of going down the list one by one and eliminating possibilites. This has been my approach too. This conversation got me thinking last night and I looked into the Sodium channel Na genetic thing and there is testing available. Did you know about that? They say this may explain 30% of idiopathic SFN cases. I'm going to ask my neuro about it.http://www.genedx.com/test-catalog/disorders/small-fiber-neuropathy-sfn/Hi Naomi,I did know about the original study about the SCN9A gene and I brought it up to the geneticist during my appointment last month. I did NOT know there was already a commercial test available. Thank you very much for the link! I will need to bring it up with the geneticist at the next appointment... whenever that will be. Quote Link to comment Share on other sites More sharing options...
Guest maia Posted September 3, 2013 Report Share Posted September 3, 2013 It is VERY frustrating dealing with the medical world, and I even work in it. It has opened my eyes on how I treat my patients and their concerns. I have been shrugged off many times and told it is just "anxiety" Example, I have tremors pretty much all the time, even when relaxing...watching TV... you can't have anxiety all day long. It can get tiring having a chronic problem, but it makes it worse when you have to spend so much energy trying to convience other people.Hang in there, I believe you, and I also think you might be able to help other people. Stay strong.It is indeed so frustrating! I used to work in the conventinal medical field and left shortly before becoming disabled with this beause I couldnt deal with the utter lack of care that was becoming rampant and the scorn I recieved for advocating. It is a sad state of affairs. It is tiring and insane that anxiety is thrown around as such a blanket without investigatoin and further complicated by it being an easy (an inexpensive 'diagnosis'). Here take a pill and shut up... Im so sorry you are dealing with the shakes. I am hanging in there, thank you and i so appreciate your faith. Hanging in there and staying strong - in between little bouts of cant take this anymore self pity attacks. You hang in there too! Im finding out more every day and will keep posting as I do. Just found out that kidney issues (ischemia and/or decreased function when upright) cause decreased vitamin d and bone demineralization too. Both of which I have developed... Quote Link to comment Share on other sites More sharing options...
HopeSprings Posted September 3, 2013 Report Share Posted September 3, 2013 Maia - just noticed in your update you wrote the floating kidneys were causing (all the stuff you listed) plus SFN. How can this be causing small fiber neuropathy? Regarding your weekend symptoms - WHY is your Doctor treating you this way if they have identified the root cause of your problems? Quote Link to comment Share on other sites More sharing options...
badhbt Posted September 3, 2013 Report Share Posted September 3, 2013 That is interesting. Have you ever had a low vit D level or a low Calcium level? I had a RBC element test, which I guess tests minerals directly in the RBC. I had a low calcium level on that test, but on a normal calcium blood test it has always been normal. Not sure how the tests differ. Will have to find out. Quote Link to comment Share on other sites More sharing options...
Guest maia Posted September 4, 2013 Report Share Posted September 4, 2013 (edited) Naomi, I didnt get all the details yet, but Its something to do with the excess production of norepi and the nerves cant take it anymore so they start protesting. And, good question! I just had an apt with that new primary today to find out whats up with the ** in my chart, how to get it removed so i can get some care, why no one has sent me to a kidney doc despite my requests for 3 weeks, and why must i spend hours in the er instead of a simple ekg in the office... Because something is definitely wrong - but good news, its not a heart attack so youre ok, and oh the er doc said your chest was tender, how is that feeling now... and your bp is reallly low... but why do you want to see a nephrologist, I gave you the names for two other dysautonomia doctors... and the big one... anxiety and depression are perectly reasonable diagnoses and she wont remove them but will be happy to forward them for me. So, as politely as i possibly could, I informed her that she is a complete idiot, that i had no use for her records, and as she came after me slack jawed asking if i wanted any help or a wheelchair or... was quite dumbfounded when i asked her if she was serious and declined. I hate to say it, but welcome to Obamacare. (please dont anyone take that as racial or presidential slur. Im in the state that the new medical system is based off of, so get ready, it isnt prettty) Anxiety and depression would be cheap compared to the specialists im going to see so im guessing its an insurance thing-there are no kidney tests, so there are no bad kidney test results, so there is no need to send me to a kidney doc, so i must be anxious and depressed to want to make sure they are still working after all this and not just go home again and lay on the couch for another year. Badbht, I have low vit d levels and havent been able to get to a nephro yet to have a bunch of other tests done. Ca is on the list though. Its been a while but I believe elemental rbc levels are bioavailable and the others are unbound in the plasma. Edited September 4, 2013 by maia Quote Link to comment Share on other sites More sharing options...
HopeSprings Posted September 4, 2013 Report Share Posted September 4, 2013 !!!! How can this STILL happen even with a diagnosis! I'm totally confused - what's up with the Doctor who ordered the scan and found your floating kidneys? I'm glad you stood up for yourself. Quote Link to comment Share on other sites More sharing options...
Guest maia Posted September 4, 2013 Report Share Posted September 4, 2013 Naomi, no kidding! Im about a very short breath from going ballistic on someone. The nephroptosis wasnt even in my chart at the ER(I wrote it in)-and they have computerized records that are linked to all the docs I have been seeing! The doc who ordered the scans-who i still consider wonderful for doing so-has apparently been looking for good pictures and now that he has one has called the surgeon and ok'd me to see him again. so, anyway, i guess the surgeon will now see me but that still leaves me without a kidney doc and now primary. I made an appointment with a shrink -who i am going to pay out of pocket- to go through the psych manuals and write a letter for me about whether or not i qualify for psych diagnoses and I think I found a good kidney guy and am waiting for a call back but now im wondering if i need a new surgeon too. Ug. Its just insanity. Thank you! Quote Link to comment Share on other sites More sharing options...
davecom Posted September 4, 2013 Report Share Posted September 4, 2013 It is insanity, Maia. Wow, the stories would be hilarious, if they weren't true! And if so many people with even "slightly out of the routine problems" didn't have to suffer because of these doctors! I can't believe how suffering people are treated by our society. If you have cancer or a heart attack you get all the sympathy in the world... but if your life is unlivable but you're not in immediate danger, nobody cares - not even the people you are indirectly paying to take care of you. Quote Link to comment Share on other sites More sharing options...
Guest maia Posted November 11, 2013 Report Share Posted November 11, 2013 Hi all, i just thought id stop in and say hi. I hope you are all doing well. Im still laying here waiting for them to do something. Yes, they said 6 mohts ago they would operate. No, they still have not scheduled it. Im really going to lose it. Quote Link to comment Share on other sites More sharing options...
Chaos Posted November 11, 2013 Report Share Posted November 11, 2013 Good to hear from you. Was just thinking of you the other day and wondering if you'd had surgery yet and how it had gone if you had. Now I know. Ugh! Waiting is terrible! Quote Link to comment Share on other sites More sharing options...
Joann Posted November 11, 2013 Report Share Posted November 11, 2013 It just stinks the way we have to wait and wait for help. I have recently discovered I have hydronephrosis (swelling of my right kidney) and mild to moderate stenosis of left renal artery. My new pots doctor had ordered the test to rule things out (I found out I also have hyper pots) and told me to take the tests to a urologist who now wants to re-do the tests. Why? I even brought a ct scan of my abdomen and pelvis area that another doctor ordered about 5 months ago and the doctor said her computer is slow and she can't read it. Really? and still insists it would not be causing my current problems. My current problem being I still cannot bend at all, lift anything or even drive along with the pain I get huge bp spikes that occur before and after the pain so it is not just from the pain, in fact today it is even hurting when I get up and walk! If it isn't causing my current problems I really don't want to worry about some new problem until I solve my debilitating issue.Why would I have to re-do a specialized utlra sound that was done less than 2 months ago! The time, money and discomfort that it causes seem ridiculous. I don't even know what kind of doctor to go to anymore, and the sitting and waiting while you get worse is just terrible. I hope you get your surgery soon. Sorry for the rant, but our health care system just stinks. Each specialist just shuffles you out to another and no one wants to look at the "whole" problem. Quote Link to comment Share on other sites More sharing options...
badhbt Posted January 31, 2014 Report Share Posted January 31, 2014 Maia,What ever happened with your kidneys? Quote Link to comment Share on other sites More sharing options...
alicios Posted February 6, 2015 Report Share Posted February 6, 2015 Maia,did you ever have the surgery? I might have my surgery soon and I would love to hear if it helped with your POTS symptoms?Alice Quote Link to comment Share on other sites More sharing options...
Science girl Posted February 10, 2015 Report Share Posted February 10, 2015 Hey Joann, How's your pain and kidney issues. I remember we had pain in a similar place and similar triggers. I've been on a diuretic since dec and my pain has decreased to a point I can do floor exercises involving bending at the waist without ending up in severe pain for days! Thought it might be helpful info for you Quote Link to comment Share on other sites More sharing options...
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