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Freaking out just a little

10 posts in this topic

Hello, everyone...


I am freaking out just a little after seeing my new Primary Care doctor today... (was supposed to see him yesterday, but it got bumped)


Went in there and my BP was nice and low at 128/78 and went over all my history that I could get my hands on, then he noticed I had started flushing and took my BP again... 190/100 left arm and 187/110 right arm. He wanted to send me to the hospital for admitting right then and there and I told him to just give me a few minutes.


A few minutes later he checked again and it was 120/68... at which time he said that it was beyond freakish, he had never seen such wide swings in such short time and he wanted me to go then and there.


I have my first dermatologist appointment tomorrow, so I wanted to wait until after that since it took so long to get it. He is not happy, but he said "okay, but this is beyond dangerous, it is deadly and can be fatal"


He is furious that none of my other doctor's have ever seen this as dangerous... and the strange thing is that today is one of my 'good days'. My BP fluctuates like that all the time. So it was a huge shock to hear him say these things.


So, tomorrow afternoon I will be admitted to the hospital, and they will keep me and test me and he says that I will not be allowed to leave until they find medicines I can take. I will be having heart caths, echo's, MRI's, spinal tap... the works.


I will try to bring my laptop and hope that they let me use it, but no clue if they will allow it.

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WOW Penny,

What a day! It's good that a doctor has finally taken noticed of your BP swings. Those are some swings. Good luck on your hospital stay. I hope they find whatever needs to be found to improve your health and quality of life. Keep us informed if you can. You know we'll all be thinking of you!


Big Hugs,

Janey Willis

ISN Support Specialist

(Retired) ISN Assistant Webmaster

(Retired) ISN News Director

(Retired) ISN Technical Writer for Training Manuals

International Scleroderma Network (ISN)

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I am sending you good thoughts for a quick diagnosis and treatment plan to get this under control. I will save a happy dance for when you come back out of the hospital with a stable blood pressure.



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Dear, dear Penny,


What a wild ride you've been having! What can we do to help? You know you'll be in all our thoughts.


I think this is probably one of those good bad things - at least you'll be getting some comprehensive testing and tailor-made treatment at last.


I'm sending enormous hugs your way and all the good wishes in the world.

Jeannie McClelland

(Retired) ISN Director of Support Services

(Retired) ISN Sclero Forums Manager

(Retired) ISN Blog Manager

(Retired) ISN Assistant News Guide

(Retired) ISN Artist

International Scleroderma Network

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<< I will be having heart caths, echo's, MRI's, spinal tap... the works.>>


Hi Penny ,


Make sure they do a study of your kidneys as that will definitely cause BP abnormalities.


Take care, Everyone.


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I'm glad that this happened in the doctors office, how many times do we experience stuff like this at home, and when you try to tell the doctor about it, nothing. It's like going to the car repairman and it works perfectly. At least he saw that this is a problem.


My blood pressure (BP) has been all over the place lately too. It was elevated for about 6 months pretty consistently, and now it is high normal. I feel at times like my BP is out of control, but then when I get around to getting it checked it is okay.


Can we feel "funny" when BP is high? I've heard it is the silent issue because you can't feel anything.


Best wishes for your stay in the hospital.



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Hi Penny,


I sure hope you can use your laptop in the hospital to keep us apprised of your progress! I'll be sending all sorts of good thoughts your way!

Warm Hugs,


Shelley Ensz

Founder and President

International Scleroderma Network (ISN)

Hotline and Donations: 1-800-564-7099


The most important thing in the world to know about scleroderma is sclero.org.

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Hi Penny just want to say best wishes and hope things go well for you with all the tests and your stay in hospital.


You take care.



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Hi everyone,


Thank you all so much for all the support... I am still in a small bit of denial and shock over this, I will be going in after my Dermatologist appointment this afternoon. I have this weird feeling that I will head in and they will not admit me, saying "we don't see anything wrong" because it has happened that way so many times, but my new doctor says that I will be admitted.



They have tested my kidneys and adrenal glands (mostly looking for pheochromocytoma) in the past, but they are going to be going through those tests again as well...



How right you are about a doctor 'catching' something happening in the act. The very same doctor that is tossing me in the hospital at first did not even believe that I had high blood pressure since I am not on any meds and it was so low on first check. Then he checked it again, and it was so high, then went low again right in front of him within minutes.


I think that is probably one of the biggest frustrations with health issues that fluctuate, it seems every time you work up the courage to get it checked your body knows what is up and acts all innocent and you leave feeling like a fool. That is what almost happened in Oct of '07, when I was having chest pains real bad and thunderclap headaches. I went to the ER and they ran all kinds of tests (cardiac enzymes) and everything came back normal, the EKG was running clear and they were about to let me go thinking it was gas... when I felt one of my 'heart flutters' come on and the heart monitor started flashing V-TACH and bells started ringing. Even then, no one came... my heart rate returned to normal, the bells stopped and eventually the monitor stopped flashing. A few minutes later in races a nurse to ask if I was okay <_< ! Turns out I had a 'little heart attack' caused by electrical irregularities, but no one ever followed up on it.


I loathe hospitals, but am coming to grips with a possible lengthy stay... maybe they will finally get to the bottom of something.


Once again, thank you all for the unbelievable support, hugs and good wishes... that is by far the best medicine in the world!

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