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Complex so dismissed and/or denied help

Posted by mazikeen @mazikeen, Jul 8 12:23pm

I have over 28 diagnoses, I’m currently unstable Stanford health can’t figure out what’s wrong they think it’s a type of dysautonomia or Pheochromocytoma or some polyendocrine disorder. I have bilateral adrenal adenomas, pituitary tumor,my blood pressure is so unstable it goes from 60/30 40 to 220/130 178. I’m so afraid I’m going to die and no one will figure it out. Stanford denied to see me at dysautonomia clinic after I requested to see Dr prior to test that may kill me and or supervisor someone besides condescending nurse but no asked for patient advocate made complaint then within hour was told they won’t see me due to behavior. My doctor referred me to mayo they denied me saying they don’t think they can help me. I have no one that cares. My children will be parentless. All I want is help. I get told all the time how I’m so complex and then refer me to some specialist just for them to say the same and send me to a different specialist. No one wants to help they’d rather I die.

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1kay2 | @1kay2 | Jul 8 7:08pm

I believe that no one in the medical community wants to take the time to listen. I just went through a month of eye pain and the ophthalmologist just kept talking surgery. I said no, had to go to er and asked doctor to just please listen and I had an abscess and he had been going to admit me to hospital until he listened. It's better no after 4 weeks of antibiotics and the original doctor still wants to do surgery.

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1 reply
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lindalk | @lindalk | Jul 9 12:41pm

I know exactly how you must feel. I am 80 live in the country I think everyone thinks I am crazy. this has been going on for a little over 3 1/2 yrs.

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standinginfaith | @standinginfaith | Jul 10 7:44am
In reply to @1kay2 "I believe that no one in the medical community wants to take the time to listen...." + (show)
Profile picture for 1kay2 @1kay2

I believe that no one in the medical community wants to take the time to listen. I just went through a month of eye pain and the ophthalmologist just kept talking surgery. I said no, had to go to er and asked doctor to just please listen and I had an abscess and he had been going to admit me to hospital until he listened. It's better no after 4 weeks of antibiotics and the original doctor still wants to do surgery.

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Oh so true!! And sad,, I just went to ER with agonizing back pain and some chest pain.. did a CT and found pneumonia.. and prescribed antibiotics and discharge papers..I just their rest room before I left and almost passed out!! The pain was agonizing ( he has said it was pneumonia pain in my kidney..I told him I had kidney stones) So I went right back in and everyone was 'Oh you can't do this..I said I need to talk to him..(Pointing at the dr) and fortunately he was nice about it..(altho security was called).I said I'm leaving here as bad as I was coming in..he changed to diagnosis to "kidney colic" and gave me a shot of morphine. Went to the Urologist and he did an ultrasound 1.7 CENTIMETER stone lodged. All this after I had just seen the urologist and he said 4 small stones each kidney come back in Dec. All this while my 95 year old Mother was passing.. exact time..arguing with nurse to get dr info from scan so if I have to go back to ER I can tell them ..HEY THERE'S A BIG OLE KIDNEY STONE STUCK" I'm gonna get a copy of the ultrasound to carry with me to ER if I have to go..gee whiz..I paid more attention to chocolate chips and hairspray when I was a sale rep!! Why don't they care anymore..??? Praying for you !!

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2 replies
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lindalk | @lindalk | Jul 10 8:13am
In reply to @standinginfaith "Oh so true!! And sad,, I just went to ER with agonizing back pain and some..." + (show)
Profile picture for standinginfaith @standinginfaith

Oh so true!! And sad,, I just went to ER with agonizing back pain and some chest pain.. did a CT and found pneumonia.. and prescribed antibiotics and discharge papers..I just their rest room before I left and almost passed out!! The pain was agonizing ( he has said it was pneumonia pain in my kidney..I told him I had kidney stones) So I went right back in and everyone was 'Oh you can't do this..I said I need to talk to him..(Pointing at the dr) and fortunately he was nice about it..(altho security was called).I said I'm leaving here as bad as I was coming in..he changed to diagnosis to "kidney colic" and gave me a shot of morphine. Went to the Urologist and he did an ultrasound 1.7 CENTIMETER stone lodged. All this after I had just seen the urologist and he said 4 small stones each kidney come back in Dec. All this while my 95 year old Mother was passing.. exact time..arguing with nurse to get dr info from scan so if I have to go back to ER I can tell them ..HEY THERE'S A BIG OLE KIDNEY STONE STUCK" I'm gonna get a copy of the ultrasound to carry with me to ER if I have to go..gee whiz..I paid more attention to chocolate chips and hairspray when I was a sale rep!! Why don't they care anymore..??? Praying for you !!

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ers suck right now

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lindalk | @lindalk | Jul 10 8:20am

i feel everyone that says i am sorry you feel like this, cannot even comprehend what we are going through. do not get me wrong because i do appreciate y'all taking the time to read. and just maybe with everyone telling their story something will be done.

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1 reply
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standinginfaith | @standinginfaith | Jul 10 8:56am
In reply to @lindalk "i feel everyone that says i am sorry you feel like this, cannot even comprehend what..." + (show)
Profile picture for lindalk @lindalk

i feel everyone that says i am sorry you feel like this, cannot even comprehend what we are going through. do not get me wrong because i do appreciate y'all taking the time to read. and just maybe with everyone telling their story something will be done.

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I think the very worst part of it is ..no one understands!! So tired of beating my head against the wall trying to make someone get it!! That's one reason I appreciate this forum so much..I think I'd have lost my mind without it!! Everyone is soo kind and seems to truly care..I just wish we weren't all in this same horrible boat..Prayers for everyone..including the medical care professionals ,,God please change their hearts!!

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1kay2 | @1kay2 | Jul 12 1:50pm
In reply to @standinginfaith "Oh so true!! And sad,, I just went to ER with agonizing back pain and some..." + (show)
Profile picture for standinginfaith @standinginfaith

Oh so true!! And sad,, I just went to ER with agonizing back pain and some chest pain.. did a CT and found pneumonia.. and prescribed antibiotics and discharge papers..I just their rest room before I left and almost passed out!! The pain was agonizing ( he has said it was pneumonia pain in my kidney..I told him I had kidney stones) So I went right back in and everyone was 'Oh you can't do this..I said I need to talk to him..(Pointing at the dr) and fortunately he was nice about it..(altho security was called).I said I'm leaving here as bad as I was coming in..he changed to diagnosis to "kidney colic" and gave me a shot of morphine. Went to the Urologist and he did an ultrasound 1.7 CENTIMETER stone lodged. All this after I had just seen the urologist and he said 4 small stones each kidney come back in Dec. All this while my 95 year old Mother was passing.. exact time..arguing with nurse to get dr info from scan so if I have to go back to ER I can tell them ..HEY THERE'S A BIG OLE KIDNEY STONE STUCK" I'm gonna get a copy of the ultrasound to carry with me to ER if I have to go..gee whiz..I paid more attention to chocolate chips and hairspray when I was a sale rep!! Why don't they care anymore..??? Praying for you !!

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I am so sorry for what you are going through. I don't know if it's just that doctors don't know, don't care or don't want to take the time. My old fashioned country doctor cared. I saw him every 3 months and each time he checked blood pressure and pulse. He said he needed the baseline to know when something was wrong, now this doctor saws he only checks if I have BP symptoms. He also told me some specialists only want to do surgeries because that's where the money is. That is the kind I had. Immediately she wanted to set the date for surgery, then finally gave me antibiotics which did clear up the infection.

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1 reply
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standinginfaith | @standinginfaith | Jul 13 4:52am
In reply to @1kay2 "I am so sorry for what you are going through. I don't know if it's just..." + (show)
Profile picture for 1kay2 @1kay2

I am so sorry for what you are going through. I don't know if it's just that doctors don't know, don't care or don't want to take the time. My old fashioned country doctor cared. I saw him every 3 months and each time he checked blood pressure and pulse. He said he needed the baseline to know when something was wrong, now this doctor saws he only checks if I have BP symptoms. He also told me some specialists only want to do surgeries because that's where the money is. That is the kind I had. Immediately she wanted to set the date for surgery, then finally gave me antibiotics which did clear up the infection.

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I'm soo sorry you're going thru this too.. seems the norm these days.. "run thru like cattle" this isn't the only one doing this to me..I have a good primary care dr..and dentist..but the rest.. "see you if you don't die off" one nurse at an ER said "you have to get out of here.. they are killing you..I don't go here and I work here..my neighbor dropped his wife off at the door of this ER and parked the car and when he got back she was DEAD..no one ever told him why..I don't go there anymore.. another dr told me "it's a bad time to be sick..".. thank God for Jesus and his stripes.. we can count on those!!

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